The Short Gut News

A little bit of Congressional Help, Please

2011-09-02T21:28:00.005-04:00

We have been getting scary news (and here)from around the world of TPN over the last few weeks: some of the important ingredients in TPN and the supplies that go with it are in critically short supply, as in there is NONE to be found anywhere. This isn't such a big deal for Ellie right now since she is still on just D10 overnight, but if she should need to go back on TPN, there are key elements that would need to be rationed or omitted from her mixture like calcium, magnesium and other trace elements that typical people get through their complete diets.

The cause of this is uncertain but two primary reasons have been suggested: one, that there aren't enough raw materials available to make the additives and two, that these very important drugs just aren't profitable for the drug companies and they have made a cold business decision to stop making the drugs or have slowed the production down.

If they were making widgets or car parts, this would be one thing, but we are talking about really important things that will have real consequences for thousands of people around the country including typical people who are in the hospital, need antibiotics or chemotherapy.

So what is there to do about this other than worry and hope?

One simple thing that we can all do is let our representatives in Washington know about the issue and the very real consequences of letting this problem continue. There are things that even a gridlocked Congress can do to urge and nudge the FDA and the drug companies to fix this problem but Congress won't act unless they hear from their constituents, who vote and are vocal.

A simple letter to your member of Congress and Senators still has power. Find them here, and write them a simple letter telling them who you are, how you or your child are or will be affected by drug shortages and ask for their help. These people have connections and do solve problems for voters every day. Ask them to help and also ask them to consider sponsoring the bills that have been introduced to increase oversight over this emerging problem. Also, if your Congressman is on this list or or Senator is on this list, they sit on an important committee or subcommittee and could be even more influential in getting answers and solving this mess.

For all of the kids and adults with short bowel and the range of other conditions that require the more than 150 medications that are currently in short supply, we thank you for your help.

Ellie got the go-ahead this week to go off of TPN.

2011-06-18T00:20:00.009-04:00

Again.

Yes, starting with next week’s shipment, she will only be getting fluids without nutritional additives and without Omegaven.

ONE MORE TIME!!!(click on me) listen while you read: NO MORE TPN!!!

Two and a half years ago she went off of TPN for the first time. She was growing enough in both in height and weight for her team to think she could stop her TPN(total parenteral nutrition, IV nutrition). She was off of TPN for 6 months that time.

Ellie's 5th Birthday Party (she covers her ears when people sing)

Before her surgery to lose her ostomy, we put her back on to get her ready and fatten her up for surgery and keep her weight up during the recovery time while her reconnected bowel learned how to behave. That strategy worked and she did very well and for the next 2 plus years. But, she has done well....ON TPN.

The problem is that TPN even with Omegaven, is hard on her body. We trust that her liver is protected but we never know for sure. Because of this we have been trying and trying for 2 years to get her off again. We have been trying different things on and off to wean her from the calories and fats that come with TPN. She has been growing on and off for over 2 years. But not enough and not consistently. Which sucked. She would put on weight and then a round of bacterial overgrowth would kick her back down to more days of TPN.

This Wednesday we went in for clinic with Dr. Lo (the TPN guru at Children’s) and Ellie had gained enough weight and grown enough for the team to feel that it was time for her to come offof IV nutrition again. She will still be on IV hydration 7 nights a week, but no IV nutrition.

Those of you that have met Ellie have seen how she runs from place to place, swims all summer, dances from room to room and lives life on her toes. The heat of summer is not the time to decrease her IV hydration.

So we are now in a two month trial period away from the complex land of TPN. As with all things short gut we understand that TPN may come back to Ellie if she needs it, but for now this significant step is great and makes us think about the terrifying possibility of a night without the whirr of an IV pump coming through the monitor.

We have a busy summer planned for Ellie. Complete with a Lego camp with 100,000 Legos. We have discovered that soccer is probably not a good option for Ellie. We signed Ellie up for soccer every Saturday afternoon. And after 2 sessions we agreed that soccer is not the sport for Ellie-Here we work all day everyday to get her to gain weight and then we sign her up for something that is just one giant calorie burn. We would watch her run around for over an hour struggling to keep up with the other kids, and then it occurred to us...

WHAT WERE WE THINKING?????

So no more soccer.

For now Ellie will continue to dance ballet, go to school (Kindergarten starts in September), take swimming lessons (at the Y!) and be a very typical 5 year old. And well, I am pretty happy about that. In the future, I think that she will rock T-ball as a left field daisy picker.

About her brother Will: He is an eating machine! He is eating, growing in to a tank of a baby. I was watching him chew the other day and realized that what I was watching took us 6+ months of feeding therapy with Ellie. It was a thing of beauty. I was mesmerized:

He has also decided that crawling is for sissies. I honestly think he started pulling himself to standing and cruising because we told him that Ellie started cruising at 7 months. A Month behind his sister Will started pulling himself up to standing and walking. Bring on the crash helmet.

2011-05-23T23:19:00.002-04:00

This is an article that I wrote for Complex Child Magazine back in April. We are working on a new post as well.

Current Information on Omegaven
by Abby Brogan

My daughter Ellie was born in April of 2006. She came a month early, but over all my pregnancy was normal and she was initially doing very well. Things began to change after her first hour. The next 24 hours were something I wouldn’t wish on anyone. It ended with both of us in a new hospital, her recovering from exploratory abdominal surgery, and the very nice surgeon explaining to us that Ellie was born missing 90% of her small bowel and 30% of her colon. After she fully explained what Ellie’s GI system looked like, she started talking about what Ellie’s life was going to be like and what the future could be like. It was a very scary and grim conversation.

Ellie as a baby before Omegaven

Starting TPN

Ellie’s GI tract was not able to absorb enough nutrients to sustain life, so she was placed on IV nutrition support, also called Total Parenteral Nutrition. Total Parenteral Nutrition (TPN) is made up of two main parts. The first part contains all the fluids, vitamins, minerals, amino acids, and medications. The second half of the mixture is the lipid, consisting of a fatty acid that has been broken down enough to be absorbed through the blood stream, and blended into an emulsion that keeps the fats from separating from the fluids. TPN enables an individual to live and grow even though he or she cannot eat.

However, the down side of TPN is that for most individuals on it for an extended period of time, particularly children under two years of age, it will also cause a build-up of fat in the liver causing damage. For these individuals, there is a race to rehabilitate the GI tract and get off TPN before the liver becomes too damaged. If they cannot get off TPN fast enough, they often will be listed for a liver transplant and, if needed, other organs as well. For those ineligible for transplant, liver damage can lead to death.

What is Omegaven?

In 2001, Children’s Hospital Boston started doing research on TPN to find out what part of TPN was causing liver damage. Mark Puder, MD, a surgeon, and Kathleen Gura, PharmD, a pharmacist, collaborated on the research with other doctors at Children's Hospital Boston. Through studies done on mice, they discovered that it was the lipid portion of the TPN that was causing the damage. But the fats contained in lipids are essential for the body, so they needed to find an alternative.

Dr. Gura had previously used Omegaven, a lipid emulsion derived from fish oil that contains omega-3 fatty acids, to treat a patient with a soy allergy and severe fatty acid deficiency. From this experience she suggested they try Omegaven in their trials.

The results were very promising.

In an article written by Children’s Hospital Boston, Dr. Puder explained the results that showed that parenteral nutrition without the fat makes the liver fatty, and by adding the Intralipid, it becomes even more so.¹ "That fat becomes more or less a fuel that burns the liver, causing it to become inflamed....But the Omegaven is an anti-inflammatory lipid that prevents fat build-up in the liver. So if there's no fuel—fat—there's no fire—injury."¹

The results were so promising that on September 26, 2004, the team at Boston Children’s Hospital started the first child on Omegaven. They saw improvements in one week, and a month later the child’s liver function tests were good enough that he was taken off of the transplant list. In most children, during the first month or so the direct bili (liver function test) goes up and then comes down. It is known as the Omegaven roller coaster. But, during this time you get to watch your child turn pink again.

Ellie's bili chart

Some hospitals are using Omegaven in combination with regular vegetable oil-based lipids such as Intralipid. Dr. Gura commented on this, stating, “Based on published papers, it appears that children with PN liver injury do better with Omegaven alone (not mixed with Intralipid). The Diamond paper from Canada actually shows this, although they still like to do the combination until the child fails and then they switch them to plain Omegaven.”²

To date Children’s has treated 166 children with Omegaven and administered over 100,000 doses. Omegaven has helped almost all 166 children, but the team has learned that the faster these children get on Omegaven, the better they do. Using it as a last resort or rescue is not always successful. The damage to the liver is already done.

How to Get Omegaven

Omegaven has not been approved by the FDA to be used broadly. Because of this, it has a Compassionate Use Only status, meaning that it can only be used if it will save the child’s life. To show that the child needs Omegaven, he must have failing liver function tests, including a direct bilirubin number greater than 2 mg/dL, indicating liver damage called cholestasis.

In the beginning, patients had to transfer to Boston to get Omegaven therapy. Now, thanks to the passionate outreach by Puder and Gura to the medical community, it has been used by almost every free-standing children’s hospital in the United States. Physicians can also apply to be able to administer Omegaven themselves, and the Boston Omegaven team has gone so far as to publish their therapy instructions with the Oley Foundation, a support group for those who rely on TPN.

Each year, more and more insurance companies are paying for Omegaven enabling patients to be treated locally and not requiring them to travel to Boston. The FDA now allows billing of insurance companies upon request. Approval, however, isn’t mandatory, and insurance companies are not required to pay for it. For a list of the hospitals that have used Omegaven and the insurance companies that have covered it, visit the Short Gut Wiki.

Making Omegaven available to everyone and covered by insurance will continue to be an issue until it is approved by the FDA for use in all people receiving TPN. Currently, Fresenius Kabi AG, the manufacturer of Omegaven, is working with Children’s Hospital Boston to get the necessary data for a new drug application submission to the FDA. The process to get a drug approved in the US is lengthy. There was hope in the beginning that additional animal testing would not have to be done or could be avoided; however, these tests were ultimately required and are currently underway.

Children’s Hospital Boston has not seen any adverse effects of the use of Omegaven, but they are monitoring all their children with long-term blood work and other follow up examinations.

Success!

The child that received the first dose as an infant in 2004 is still on TPN and Omegaven at age seven, goes to school and has shown no adverse effects from the TPN that likely would have destroyed his liver just a few years ago.

A recent picture of Ellie

My daughter Ellie was the 23rd child to receive Omegaven, and has now been on it for almost five years. She is doing well, growing and thriving. Both my husband and are so thankful for Omegaven, and the doctors that brought it to our attention. I will not let myself imagine where she would be without it.

Thanks to Mark Puder, MD, and Kathleen Gura, PharmD, for their personal assistance in providing information for this article.

Abby lives in the Boston area with her husband and daughter Ellie. Ellie was born in 2006, missing 90% of her small bowel and 30% of her colon due to Jejunal Atrisia. Ellie is diagnosed as having Short Bowel Syndrome. Ellie has had multiple surgeries since birth and is on tube feeds and Home Parenteral Nutrition (HPEN). Abby and her family have faced the many challenges that come along with having a child with tubes, yet lead a remarkably active lifestyle. Abby is also a consumer advocate for ThriveRx. Please feel free to contact Abby at
1-774-270-3425 or via email at abrogan@ThriveRx.net.

¹http://www.childrenshospital.org/dream/dream_fall06/fishing_for_the_right_solution.html See also http://pediatrics.aappublications.org/cgi/content/full/118/1/e197
²Personal communication with Dr. Gura. The study she cites is Diamond IR, Sterescu A, Pencharz PB, Kim JH, Wales PW. Changing the paradigm: omegaven for the treatment of liver failure in pediatric short bowel syndrome. J Pediatr Gastroenterol Nutr. 2009;48(2):209-15.

Trouble for Omegaven in Maryland

2011-03-09T07:48:00.002-05:00

Gib just learned that there is a bill before the Maryland legislature that will prohibit the manufacture, distribution or sale of any products made from Atlantic Menhaden, the tiny smelly fish that we have been told is the primary source for Omegaven's omega-3 oils. HB1142, as it is known, is scheduled for a hearing on March 16. It is very vague but could mean the end of omega-3 supplements, medications, possible research in Maryland unless they can be shown to be derived from non-Menhaden sources.

http://house.state.md.us/2011rs/bills/hb/hb1142f.pdf

We are not fans of the commercial menhaden industry and believe their fishing should come under more stringent control to look out for the oceans and the Chesapeake Bay, but this approach could have real consequences for people, both old and young in Maryland and beyond.

If you would like to have your opinion heard on this, especially if you live in Maryland, letters can be addressed to:

ENVIRONMENTAL MATTERS COMMITTEE
Delegate Maggie McIntosh, Chair
Delegate James E. Malone Jr., Vice Chair

Room 250, House Office Building, Annapolis, MD 21401-1991

Not Heavy Enough

2011-03-02T17:19:00.003-05:00

We had clinic today with Dr. Lo's TPN clinic. Ellie had only gained just a tiny bit and had grown an inch since last Nov. The problem is in December she got sick, got admitted, had really bad SBBO and lost a ton of weight. So the fact that she is up from November's weight is good news to us. But when they did the body mass evaluation her numbers were down. So she is growing but needs more calories. They want us to get those calories enterally not through more TPN. So we are going to push more elecare by mouth and turn up the overnight enteral pump. We are also going to try going up in calories per ounce of formula.

They also talked about prepping to get her off of TPN/hydration fluids. To do this we are decreasing the amount of every overnight hydration bag from 1200mls to 1000mls. We have clinic again in 2 weeks and if she is doing well we will decrease more, if not then we go back up. First they said they wanted to leave every night at 1200mls and then do one night at 600mls. The idea of that made me gulp. So we compromised with a decrease to 1000mls.

All in all, they were happy with how she was doing, just not as impressed as I was. So now we try new stuff and hope for a big weight gain over the next few weeks. We're in for big fun now!!!

Think Heavy & Remembering the Beginning.

2011-03-01T11:21:00.005-05:00

Ellie has been doing really well lately. She is eating like a horse and we have been able to keep better control over her bouts of overgrowth. From what we learned in the last Maximize Health webinar, protein is key for Ellie. Protein is digested in your Jejunum and the only small bowel that Ellie has is her Jejunum. So we have kicked it up a notch in the protein department. We have started offering, low fat ground turkey, low fat ground beef, poached chicken and some vegetarian options. Eggs apparently at a perfect protein and Ellie is loving her eggs right now. She has been very happy with our diet modifications.

So, we are keeping our fingers crossed that at our TPN clinic tomorrow we will hear good news. We always tell Ellie to think heavy thoughts before she steps on the scale at clinic. And tomorrow she better be thinking HEAVY. We are only on 3 nights of TPN and we want OFFFFFFFFFFFFFF!

Ellie has already come off of TPN once. When she was 2 and half years old she was off for 6 months. Then we did the reconnection surgery and now almost 2 years later we are hoping to get off again. Keep your fingers crossed for us!!

Getting this close to getting off of TPN has made us think about when we went on. I have also been talking to some parents that are right at the beginning of this roller coaster ride. I have forgotten how scary and uncertain things were after Ellie was born. William has been very easy and it has only pointed out to us how hard things really were. When Ellie was born there was very little information out there about Short Bowel, TPN or Omegaven. Many times we felt like we were flying blind. We did get hope when Ellie was a month old, a family that used to live in AZ send us a picture of their son that was short bowel. He looked fantastic. It made us realize that how things were now was not how they were going to end up.

Now there are many resources out there for parents and adults with short bowel. Over the next few weeks I am going to update the links we post on this blog to make sure that all the resources are listed. I also want to update our blog list. Most of the kidos listed are around Ellie's age, give or take a year. I would love to add some blogs/caringbridge sites for more kids and even some for adults. If you have any suggestions for resources or would like your blog added please either leave a comment on here or email me abbybrogan@hotmail.com.

The next topic for Maximize Health is fats in the short bowel diet and how to avoid fatty acid deficiency. This will be very important if we get off of TPN!!

Nutrition for Short Gut

2011-01-27T10:58:00.005-05:00

We have struggled with Ellie's nutrition for a while and found that there were very few resources out there to help. It is a balancing act of getting her to eat and gettine her off of TPN,...good diet=less TPN.

We have a good nutritionist at Boston Children's but we only see her once every 2 months or if something is wrong. We have a great nutritionist through ThriveRx but what I have always wanted was a book or guide that we could keep on hand. Something that we can also share with our family and Ellie's nurse to help them understand the intricacies of Ellie's diet.

Finally we got what we needed. ThriveRx has created an online short bowel diet guide called Maximize Health. Each month they release a new topic, so far they have covered Diet overview, hydration, Carbohydrates and the next module is going to be on protein. The educational modules are available on line and then they host a webinar on the second Tuesday of each month led by the author of the modules. She gives a better explanation of the content of the modules and then at the end she answers any questions that you might have.

For us the Carbohydrate module was very informative as this is 80% of Ellie's diet. It changed the way we looked at her food and made us be much more aware of what she is eating. I am very excited about the module on protein since we know this is very important for Ellie but we are always struggling to get enough in to her.

The best part about this education program is that it is free to everyone. If you are interested just visit ThriveRx.net You have to register for the program, this will give you access to all the past modules, and recordings of past webinars and get you an invitation to upcoming webinars.

If you have questions about this email me at abbybrogan@hotmail.com.

They are also hosting a webinar next week on TPN stability called. TPN Compatibility and Stability: What’s the big deal? it s on February 4th @ 12:00 noon EST.

Presenter: Sheila Pedapati, Pharm.D.

She will talk about:

Verification of IV compounds and supplies
Patient counseling regarding medications, supplies, and pump use
TPN compounding and different types of pumps
Working closely with nurse liaisons to optimally manage patient care

IF you are interested in this one email: info@thriverx.net.

2010 A YEAR IN REVIEW

2011-01-12T13:43:00.009-05:00

Again we have let too much time pass between posts. Posting once in 6 months is not OK. Rather than try to catch up with a quick update. I am just going to do a review of the year.

2010 A YEAR IN REVIEW

We started the year with the huge bummer of Gus getting diagnosed with cancer. Then moved on to the excitement of Ellie’s first solid poops. In mid January we had a new refrigerator delivered and installed. The next morning we woke up to a flooded basement, and flood damaged kitchen. This led to a nice little kitchen and basement renovation that we have always wanted to do, Thanks Sears!!. During all this we also found out I was finally pregnant with baby number 2. I was rocked by ragging morning sickness, but I would have put up with anything, we were so excited to be pregnant again. I think this made loosing Gus in April a bit easier to deal with.

We struggled with hydration for Ellie through the end of the spring into the beginning of summer. We finally got things under control just in time for the Oley conference in NY. This kicked off a great summer with Ellie taking to swimming like a fish. We spent a week on the Cape with my family.

Ellie was on the beach and in the water everyday. We managed to get our routine for covering her dressing down so well that she went the whole week on the beach, and in the water, without her dressing ever getting wet. She had such a blast she has been talking about going back ever since.

The summer ended with Ellie starting school again. She started five days a week and we struggled all fall to keep her in all 5 days. She stays home if anyone in her class or the class next to hers has a stomach bug or if she is feeling punky. We work with her school to create a letter that goes out to all the parents explaining Ellie’s issues and why following the school’s sick policy is so important to her. This worked well last year and so far has worked well this year. The best part is it really helped other parents be able to us about Ellie.

We spent the fall apple picking, going to local farms, exploring Boston and enjoying the cooler weather.

I loved the last part of my pregnancy and loved making it all the way to my due date. My pregnancy with William was much easier and I felt much better thought out the whole thing. This just made us realize how sick Ellie was in utero and how much of a toll that took on me. William was a breeze in comparison.

At the center of the hedge Maze

William was born via C-section because I went into labor but never progressed. We called the ball a bit earlier with William than we did with Ellie and that made my recovery much faster with William.

Ellie was a giraffe for Halloween and managed to cover most of the neighborhood with her friends.

She doesn't like chocolate so that made the candy easier to deal with. And after the first few days she forgot that she had candy and that made it easier for Gib and I to finish it off.

I took the rest of the year off from work and enjoyed the rest of the fall and holiday season at home with my kids. I am still getting used to saying “kids”.

Through out the fall we struggled with Ellie’s short bowel bacterial overgrowth (SBBO) , so much so that the intervals between outbreaks got to be shorter than 1 week. We made our rounds through different drugs trying out Flagyl, Vanco and Cipro without really making any progress. We got to the point where we were giving her an extra 1000 mls of hydration fluids each day and still not keeping up with what she was loosing through her loose stools. This finally came to a head in December when we lost control of Ellie’s hydration and had to have her admitted to Children’s.

She spent 5 days in the hospital getting hydrated, doing bowel prep and getting a scope of her bowels to see if we could see anything that was wrong. We were also able to sample some of the fluids that they found in her bowels and culture it see what bacteria we were dealing with. They typed it out and then tested different antibiotics on it and found that Bactrum was the new antibiotic that we should try.

We did a week of Bactrum right before Christmas and it finally stopped the cycle of SBBO that we had been seeing. We also finally started probiotics (VSL3) after talking to another family that has been using them for years. Our team at Children’s was against this decision but they understood why we wanted to try them. And so far so good, it has been just under a month since we saw any signs of SBBO. (knock on wood now)

Christmas was great, we even got some snow to make it a true white Christmas.

We spent the week following Christmas and New Years in Maine with Gib’s family. We had a blast and Ellie loved seeing everyone up there.

So, now we have started the New Year. Things are good so far. In comparison to last year it has been an uneventful year so far. We did make the decision to take Ellie out of school for two days a week; we are hoping this will give her a chance to recover from her fall. William also started part time daycare last week. I think that was harder on me than it was on him.

All in all William has been so easy and laid back that if we could afford it I would be pregnant again. It has been great for Gib and I to have the chance to be typical parents. There is nothing like a very high maintenance baby to make a typical baby fell like a cake walk. Although we did have to remind our pediatrician to treat us like first time parents because we have no clue what to do with a baby that is under 8 months old and at home. All the typical kid stuff throws us for a loop. Things like… eating and pooping, those are things we didn’t have to deal with in Ellie’s first few months.

Today we are spending the day inside watching a true Nor’easter dump close to 2 feet of snow on our house. We have been out playing in it once already today and will head out again as soon as our mittens dry out. We promise to make more of an effort to keep this blog up to date this year. I know you have heard that before, but this time we really, really promise!

William Pics #2

2010-10-20T21:31:00.004-04:00

Here are some more pictures of William. We were discharged from the hospital yesterday. We have all been recovering trying to sleep as much as possible. Right now William is spending all his time eating and sleeping. Now here are some more pics of William and his family.

William and his Aunt Jennifer

What the house looked like when we got home. Thanks Sara, Jennifer, Karlene and Ellie!

Karlene, Ellie and William

William in a blanket that his Aunt Karen knit

William and his sister

William Gilbert

2010-10-18T09:21:00.004-04:00

Ellie got a little brother this weekend:

William Gilbert Brogan arrived at 2:47 AM on Sunday. 8 pounds 11 oz. and perfect.

The question now is how long will it take us to get used to a typical kid, doing typical things. Poop, eating, and sleeping are all new for us and force us to admit to the nurses that we are not quite first time parents.

Abby and I both look to clear IV lines when we pick him up.

Ellie wanted us to know that he shouldn't be afraid about dressing changes and wondered where his ostomy bag was because that's what babies have.

How different it would have been to have the complicated kid come second.

Saved by a fish, Swims like a fish.

2010-07-11T22:17:00.007-04:00

It has been a very long while since we have reported Ellie’s progress and I thought that it would be good to bring this blog up to date with some info about how the girl is doing. In a word, fantastically. So well in fact that we have very little time to sit down and write about it.

But more specifically, now that we have the time here are the newest developments.

We have had a pretty rough Spring. Ellie’s Bacterial Overgrowth (caused when the bad bugs flux up into her small bowel from her colon) made her gassy, and vomit a lot while taking her appetite and dehydrating her all at the same time.

No fun for anyone. All to often it leads to a funny/awkward scene at the mall with me standing over a puddle of short gut barf trying to flag down a janitor before someone slips and falls as Abby and Ellie run to the bathroom before the second wave hits....

It looks like four courses of heavy antibiotics including seven-day courses of Flagyl, followed by Cipro, followed by Vancomycin, and another course of Vancomycin over an eight week period this the spring has finally done the trick and knocked down the carpet of bugs.

We treated the effect and then hunted down the cause. We finally thought of her overnight hydration. In the end of March we decreased her nightly IV infusion from 750 to 500mls. Not a big change but big enough. Two weeks after this change is when the overgrowth reared its ugly head. The fact that it wouldn't go away meant that we had to find the cause. And about two weeks ago we finally did. Bump her back up to 700mls a night, and Presto-Change-O, SHE"S BACK!!!

Ellie’s appetite is back now and she is doing quite well eating three meals every day, asking for snacks in between. If she had her way, she would eat nothing but macaroni with olive oil and wheat thins. Her mother and I do everything we can to get protein into her diet and she is doing well with scrambled eggs, ham, chicken, and Boca sausages.

Top this off with a liter of Elecare and you have a recipe for a growing girl. In the last two weeks, she has put on almost two pounds of the weight that she lost since getting overgrowth in the early part of the spring.

With all of the food and fluid going in, you might ask about her bowel habits. First off, she is very proud of the fact hat she has been wearing big girl underpants for a long time now. Each day she starts out by taking on the persona of the Disney Princess on her drawers and most nights she can even make it through the night with the TPN pump going with only one call for help to carry her pumps into the bathroom for her.

Accidents are quite rare and most days see between one and three poops of varying consistencies*. If she gets backed up, she gets nauseated and uncomfortable, an indication of how ‘short’ she really is but we have learned to recognize these signs and get her bowels to clear and make room below.

*This is the part that she will crucify me for writing when she is 14. Sorry, Ellie, it’s public service, I guess J

Unfortunately our bumpy spring has slowed our doctor’s ambitious plans to have her off IV fluids by the fall and in fact, we had to increase her TPN this spring to keep her weight up. Right now she is on 4 nights of TPN a week with Omegaven, and just D10 on the other nights. It is working to keep her weight increasing and also keeps her well hydrated even when it is hot. Those are good things right now.

We have TPN clinic in a few weeks and will likely get advice to wean a night of TPN. If the magic scale at Children’s shows her weight holding its own, I am all for it.

Another exciting update is that our little swimmer has been improving rapidly in her aunt’s pool over the last few weeks and now swims, with just her bubble on her back, from one end of the pool to the other and rarely needs help. We have had a lot of practice and are getting quite good at waterproofing her Central Line to the point that everything is dry when we are finished.

Our Recipe for success in pictures:

1) Wrap Press n’ Seal tightly around the CVL cap making sure to cover the threads of where the cap screws onto the line.

2) Coil the line plus cap over the dressing

3) Cover the coiled line and dressing with a large piece of tegaderm so that nothing is sticking out, and voila, you are waterproof and submersible.

More often than not everything under the tegaderm is dry and we just pull off the tegaderm and leave the dressing. If the dressing is wet we change it ASAP but, because the cap is covered with press-n-seal it stays dry. That be said, more often than not we change the cap after a swim day. The risk is just not worth it.

Ellie swimming has been great for her, but even better for us. Imagine two marine biologist having a child who's life is saved by fish but cannot swim. Finding a way for Ellie to swim and seeing her love it as much as her parents do is, priceless.

The final bit of news is Ellie’s first big girl haircut. This weekend her long hair became too much to manage and we got a bit aggressive with the scissors. The result is our four year old who seems to be channeling her inner Natalie Portman in the The Professional:

I’m trying to avoid the mental image of her telling me, “I've decided what to do with my life. I wanna be a cleaner.”

HE DID IT, 13.1 miles with Short Gut!!!

2010-06-28T09:38:00.003-04:00

Dave Vermette ran a half marathon yesterday. Remember this is the man that is missing most of his small bowel due to Crohn's Disease and he is on TPN.

Check out his blog for pictures: http://thriverx.wordpress.com/

One picture you will not see is this one of his jersey. Check out the third name down. I have been saying that Dave is an inspiration to me and will be an inspiration to Ellie when she is older. But it seems that Ellie has been an inspiration to Dave the whole time.

It is so good to see someone defying the odds and refusing to settle for a life that the doctors told him he would have to live. The training was not easy, and not always fun. But the smile on his face yesterday was amazing.

I also think some of the other runners were a bit jealous of the IV bag he hooked up to after the race.

GO DAVE, GO!!!!!!!!!!!!

NSTAR walk for Children's hospital

2010-06-13T16:54:00.005-04:00

We just finished the NSTAR Walk for Boston Children's Hospital. We walked 2 miles with team Blaise! The team was made up of Blaise and her family, and Faith and her mom, and some great friend's of Blaise's. As a team we raised just over 3,200$. No to shabby.

Ellie and Faith

We couldn't help but think of the last time we walked and how different Ellie was this time. Other than the fact that she is 3 older. Differences: No ostomy, potty trained, finishing her first year of pre-school, off of TPN and back on, and she is starting to read. Gib and I hoped during the last walk that 3 year later she would not still be on TPN, but hey, things are pretty good and we are not complaining. Ellie had a great time this time and walked a fair amount of the walk. She really liked looking at all the duck and geese along the way. She also loved all the after race festivities. Like getting her face painted, getting metal for finishing and the Blue's Clues moon bounce. She also love collecting all the swag from the vendors.

It was also fun to catch up with Blaise's parents and Faith's mom. We had dinner on Friday with everyone and as always it is so nice to talk to people that have been through what you have been through. We hadn't meet Blaise's parents in person before, we had emailed and talked on the phone but that is it. We also hadn't seen Faith's mom since right before they went home last year after coming out here for Omegaven. It was amazing how big both girls were and how great they are both doing.

During the walk today we ran into a bunch of the nurses from 10 East and the child life specialist. It was good to see them outside of the hospital. I don't think we say thank you to them all enough. They all always do so much for us to make our stays at the "inn" as pleasant as possible.

To all the nurses on 10 East and Lakeisha (the toy lady as Ellie calls her) .....Thank you, Thank you, Thank you.

It was a vary fun day followed by Ellie not taking a nap

Short Bowel Hydration Hints

2010-05-28T19:27:00.002-04:00

I am posting information about a Webinar that ThriveRx is hosting next Friday, June 4th at noon. I just saw a trial run of the talk and it was fantastic. I really wish I had seen it about 3 years ago. The talk is free and open to anyone. It centers on oral hydration tips but it would work for those without short bowel as well.

“Hydration Hints for the

Short Bowel Consumer”

Presented by Maria Karimbakas, RD

June 4^th at 12 noon

Topics to be discussed:

v Causes of Dehydration

v Signs and Symptoms of Dehydration

v Treatment Options

v Preventing De-Hydration

v Review of Oral Re-hydration Solutions

Maria Karimbakas is a registered dietitian. She has worked at Brigham and Women’s Hospital in Boston, Nutritional Restart Center in Hopkinton, MA, and currently she works as a consultant for ThriveRx. Maria has co-authored several abstracts and papers on the subject of diet and SBS.

You may access this program by phone only or via the web.

To register for this event please email Abby Brogan at abrogan@thriverx.net.

2 Hours 20 min

2010-05-28T13:38:00.002-04:00

Another record for Ellie. Fastest UGI since she was reconnected. Very good news. They saw a bit of dilation but not blockages or narrowings. We were very happy and said, "ok what IS wrong then?" We are brainstorming and trying to come up with some ideas. This is the part of Short Gut I don't love, the guessing part. Since no two short gut kids are the same, you just have to try everything until you find something that works. UGH.

UGI

2010-05-27T07:21:00.003-04:00

Yes, that means Upper GI study. About a month ago Ellie started having all her normal signs of overgrowth.

Stinky poops and gas
Increased gas
Decreased hunger drive
Yellow colored very loose stool.
Vomiting in the late afternoon/before dinner.

So we called CHB and got her on a week of Flagyl. No change. Maybe we targeted the wrong bug. Start one week of Cipro. No big change but a bit better. Ellie's nurse comes down the stomach bug and Ellie starts vomiting more frequently. We chalk it up to the bug and wait it out. Last week we finally called CHB, squeezed in to a last minute clinic appointment. She lost just over a pound in the past 2 months. They started her on a week of Vanco and added a night of TPN. We talked to Dr. Jennings and he said a UGI might be in order, and Gib and I begged to try everything else first.

Now it is a week later, all her signs of overgrowth are gone, but she is still vomiting. UGH.

So this afternoon we are headed to CHB for an UGI. I hate these. Ellie doesn't mind them too much, they do not involve a blood draw or a shot, so she is happy about that. But the worst part is getting the thick white barium out of her after the study. This one will be different because I cannot be in the room with her for this one, pregnancy and radiation do not mix. We have talked about it a bunch last night and today so I think it will be ok.

We call the UGI cave that they put you in a camera. So we bring our camera, Ellie takes pictures of the camera, the room, the tecs and us and then the "camera" takes pictures of her belly. It worked pretty well last year, so we should be good this year. Knock on wood. We got a KUB x-ray last week and Ellie ran into the room, stepped on the lever to lower the table, hopped on, laid down, pulled up her shirt, lowered her pants to expose her belly and yelled "say cheese!" . You should have seen the technician's face.

Now of course through all this Ellie has been her normal bubbly self. She is still going to pre-school, up to Maine for her grandfather's 70's birthday, to ballet, to swimming lessons and building the most awesome Lego castles. She doesn't like the vomiting part, but she has over all been pretty good.

Both Gib and I are not sure it is an obstruction that is causing the problems but we seem to have looked at everything else. I really don't want to see one today, but on the other hand I want answers as to what is wrong. Again we are heading into summer with GI issues. We lost most of our summer last year to GI issues and surgeries. I would love it if we could not have that happen again. I would like to worry about what we are going to do for fun and how we are going to fit it all in, not about being inpatient again. And I really don't want to have to tell Ellie that she needs another surgery, she remembers too much from last summer.

Sorry, no pictures on this post. I will post more later. And we will update you on anything that they find during the study.

Inspiration

2010-04-19T16:24:00.002-04:00

I have been helping my friend Dave write his blog about training for the Boston Half Marathon. What makes this is so incredible is that he only has 20cm of Small bowel. He works full time, is an avid advocate for others in his situation, and oh yeah.... he is going to run 13.1 miles this June.

I am perfectly healthy and that task seems daunting. But it has been really fun helping Dave and to see his progress. But I have to say the best part is seeing his determination and refusal to just sit back and be an observer.

Whenever I get sad about the things Ellie might not be able to do when she is older, I just check out Dave's blog and I feel much better.

Thanks Dave for the inspiration.

Dave's Blog: No Guts, All the Glory

4 YEARS OLD!!

2010-04-09T10:53:00.002-04:00

Happy 4th birthday Ellie!!

I can't believe that she is 4. That means she is much closer to being 5 and the next thing I know she will be 10 and then 20 and......

I am so not ready for my baby girl to grow up.

We are having a quiet celebration here tonight and then a blow out birthday party with her preschool class. We have rented a bounce house and are ready for the madness.

We check the weather forecast about a million times a day, and so far we have sun. So keep your fingers crossed for sun!!!

Ellie has requested cupcakes again this year, so I will be baking all afternoon. She is decorating cookies with her class today at school. It is amazing to me how good dairy free, nut free, egg free cookies and cupcakes can taste.

#2

2010-04-08T16:49:00.000-04:00

We got our first look at #2 today. The high end ultrasound was way better than the one that the previous OB used.

Maybe that's why they missed the diagnosis completely! Either that or they just weren't very good.

#2 looks great, and is quite active even though not big enough for Abby to feel the activity.

We will miss you Gus

2010-04-07T10:30:00.004-04:00

We had to say goodbye to the Wonder dog yesterday. He was great and we will miss him.

Drumroll, Please.

2010-03-29T13:51:00.003-04:00

Ellie has some breaking news that she would like to share:

http://www.youtube.com/watch?v=bW40R-_iQrw

Swimming

2010-03-22T15:57:00.007-04:00

This winter Ellie started swimming lessons at our local YMCA.

How, you might ask, is the same girl that didn't take baths is now swimming at the Y?

The answer lies somewhere in the land of technology, calculated risk and a healthy dose of normalcy.

The technological side came with our fine-tuning of a way to keep Ellie's central line cap and dressing dry even in a pool. We started experimenting last summer in Abby's sister's pool and had some miserable failures but since we have gotten much better and have a waterproof system that works very well.

It starts with a piece of Press n' Seal from the supermarket. We wrap that around her cap and press it to seal it. Water against the cap is the big risk for infections and s it does sealing food in your fridge.

Once the cap is sealed, we take a piece of tegaderm, a very sticky, waterproof film that comes from the medical supply company and cover her whole line, dressing and cap under a canopy of plastic.

Voila, we are waterproof!

We think that the biggest thing is that now Ellie's chest is finally big enough to fit a sheet of tegaderm onto her chest without any folds. Folds are bad and let water in. That isn't to say that the solution is fool-proof and we are quick to come home and change her dressing and cap before her next IV infusion but it reduces the risk and lets us get her doing things that other almost-four-year-old kids do.

It was time get her wet and this does the trick nicely even if Abby and I both keep personal 72 hour clocks after she gets wet to watch for central line infections.

We can now focus on getting her to let go of the pool wall by summer.

Long, skinny, and strong? Ballet!

2010-02-12T17:55:00.008-05:00

Pay no attention to the lumpy things under my leotard...

3-4 year old ballet started last week and Ellie loves everything about it. Everything except the short nap that comes on ballet days. She gets to dress up, play with other little girls and then comes home to 'practice'. Excellent.

It is fantastic winter fun in a year with no snow (really), especially when our house is in epic shambles right now after the asbestos team spent the day here on Wednesday.

Reconstruction starts next week...

Not so bad...

2010-02-07T23:19:00.003-05:00

Yes, it has been a crappy month, but things aren't all bad:

At least the dinosaurs aren't attacking...

Just a spoon full of sugar......

2010-02-03T21:45:00.003-05:00

The title of this post is in honor of Ellie's new addiction to Mary Poppins. A pretty good addiction to have if you ask me.

Sorry it has been so long since we have posted. Ellie is doing well but we have had a doozy of a month. I am going to do the list in bullet form just to be short and sweet.

Gus, the wonder dog, starts coughing
Fridge died, dead.
Our nurse who we can't live with out, called out for almost 3 weeks. (She had some serious GI issues that are getting much better.) And we did not get a replacement for that time.
New fridge arrived, got installed.
Fridge installer broke pipe in wall.
Rain in basement, puddles on kitchen floor.
Damaged by flood and removed:

Carpet in basement
Ceiling in basement
Bottom 4 feet of basement walls
Laundry room floor
Storage room floor
Kitchen floor, this means they removed everything in the kitchen: dishwasher, sink, stove, cabinets and fridge.

OH WAIT!!! That kitchen floor has asbestos in it......
Now we have no kitchen until Feb 10th when the asbestos removal team arrives. Then we can start rebuilding.

You think that sounds bad? Here is real kicker

Gus's cough is lung cancer. He only has months to live.

Sorry to be so sarcastic, but I have to laugh about it or else I will start crying again. Ellie has been really into Gus over the past half year. He sleeps at the foot of her bed (next to her TPN backpack, our TPN team just cringed.) Her favorite way to watch TV is snuggling with Gus on the couch. We are struggling with how we are going to explain the next few months to Ellie.

Gib and I have been afraid to talk about how well Ellie is doing for fear that will go to pot too. You know how they say bad things happen in threes? Well we are working on sixes and sevens and have been walking on egg shells waiting to see what else will happen.

Seriously Ellie has been doing well. We are still on 4 nights of TPN/Omegaven. At clinic two weeks ago they said she grew 2 inches but gained no weight. So, she is now on the weight gainer diet. We upped the calories in her Elecare and we are now kicking up the good fats in her diet.

We were taken aback this past month because Ellie first off is potty trained! Not at night, come on.. she gets a liter of fluid every night. But we still collect her urine and stool in a hat in the toilet so we can gage how her hydration is doing and better yet how her stools are looking. But starting at the beginning of the month we started to see honest "logs" when Ellie pooped.

Now, if "logs" don't sound exciting to you, then you are not the parent of a short gut kid. It was our first log in over 3 years. She also started pooping only once or twice a day. We were happy at first and then freaked out. Is she dehydrated? Overgrown? What could it be?

They laughed at us a little bit at clinic and reassured us that is was just a well functioning colon. WHOA. Mind Blowing. IT WORKS!! So, it took 3 years, we are not going to complain.

So now we fatten her up and get her off of TPN. I hope. Knock on wood, cross your finger, sacrifice a goat, do a dance around a fire, do what ever you do for good luck and send it our way. We need it.

I'm off to snuggle with my dog.

All I want for Christmas is....

2009-12-24T22:27:00.007-05:00

Flagyl.

Yes, the Bacterial Overgrowth is back. Lots of gas from both ends, smellly poops and not appetite-all classic signs that the bugs are growing in places where they shouldn't which causes gas, malabsorption and other troubles. Fortunately we got our holiday shopping done early this morning and had the prescription filled by lunch.

We don't like the thought of needing to cycle the antibiotics but with her current plumbing and lack of the control valve to keep the bugs in the proper place, we are coming to realize that rotating drugs is probably in order for a while.

We are all very excited for Christmas and will try and post pictures of Ellie's extravaganza tomorrow.

In the meantime, here is her Christmas card picture for this year:

Merry Christmas.

And, as Ellie will tell you, Happy Hanukkah and Kwanzaa.

Santa!

2009-12-20T20:32:00.007-05:00

Our town has a wonderful tradition before Christmas where Santa rides around town on a fire truck making stops in various neighborhoods over the course of three nights. They have been doing it for 45 years now and this is our second year maing the trip to se ehim as he makes his tour.

Christmas is a very bug deal in our house right now along with Chanukah and Kwanzaa since Ellie is an equal opportunity holiday celebrator. So we made sure to track his trip tonight and even went so far as writing a letter to the big man which she delivered when she was brave enough to sit on his knee.

Uh, Mom.... Are you sure this is okay?

Here's my letter.

A very serious conversation. Santa took lots of time to hear all of the details.

I'm still sure about this whole thing.

And away he goes.....

Do you sthmell it?

2009-12-06T21:32:00.004-05:00

In the past few weeks Ellie's bowels have started to act funny, make a lot of gas, and around Thanksgiving, her appetite went to zero which is a generally bad sign. She has been quite happy as usual but told us very clearly that she 'didn't feel like eating today'.

We spoke to Childrens’ early last week and the two sides of her team, surgical and medical, with a healthy amount of input from Abby and I, suggested two parallel approaches to treat her new symptoms: a round of antibiotics to treat possible overgrowth in her small bowel and a contrast study of her bowel to rule out any anatomical problems like a stricture, narrowing, or obstruction like we saw in August.

On Wednesday we started a seven day course of Vancomycin to treat her gut bugs. 'Vanco' is a really heavy hammer to swing since is usually reserved as a drug of last resort to treat particularly nasty resistant bacteria. But it is very effective.

Then on Friday Ellie had yet another upper GI study done at Children’s. We have honestly lost count of how many of these she has had but this study involves a baseline x-ray of her belly (a KUB for Kidney-Ureter-Bladder) followed by a trip to the fluoroscopy room where they put her on a special x-ray table that has a camera that lays over her in a sort of tunnel. After she is in the machine with her head laying on a rolled up towel watching a Kipper DVD, they attach a syringe of barium to her g-tube and inject it into her belly. The machine takes a lot of pictures and we all can watch the dye move through her bowel on a big video screen.

Then we wait 30 minutes and have another x-ray taken to follow the dye. Wait. Repeat. Wait. Repeat. Use fluoroscopy to manipulate her belly and try to move the dye and her bowel. Wait. Repeat.

Ultimately the study should end with the dye passing through her entire bowel and a big chalky poop. It should happen this way. But as with all things Ellie, not much happens as it should.

After four hours of very patient waiting, and a very enthusiastic Ellie running to get her next ‘picture’ taken of her belly things still had not moved through.

To possibly advance the agenda I suggested to Ellie that she try pooping. Instead, as we went in for the 5:00 PM last attempt at seeing things pass, Ellie decided to fart for us. A possible sign that things were moving, I asked her:

“Ellie, did you fart?”

“Yes,” she said with an angelic big grin. Proud as can be she then asked me “Do you sthmell it?”

I think that the radiology technician may never recover.

The study told us some things about Ellie’s gut. We think. UGI studies are a science but also have a huge amount of art to them. The dye is apparent and you can make some sense of what is going on but since Ellie’s plumbing is far from typical, you really need to know her bowel to understand what is going on. It takes a very good radiologist with some input from us and often some advice from her surgeon to truly understand what is going on.

What we found is that there likely isn’t an anatomical cause to her symptoms. This is very good news for us since scarring, healing and other things could cause the problems to come back even after her surgery in August.

The study did show us that her bowel is still dilated. This could be a return to the situation that she was born with and needed an ostomy but since the dilation is uniform and showed good motility it is more likely part of the dilation that we have been told is part of the expected adaptation of her bowel to overcome its lack of length. If the bowel cant gain absorbtive areas by growing longer it often expands in girth to extend the surface on the inside.

This is our hope.

The appetite is back and even after TPN last night Ellie woke up wanting breakfast. This is music to my pancake-making ears even if she only eats a little bit before moving on to eggs and ham.

Christmas is in full swing and we are hoping that things stay smooth through the holidays.

The third floor

2009-12-01T21:32:00.002-05:00

Ellie and I had to go to Children's yesterday for a blood test and to get more Omegaven. On the way to the basement while we waited for the elevator, Ellie looked up at me and told me, "I don't like the third floor. That is where they put the tube in my nose."

The third floor, for those of you who haven't been to CHB, is the floor with the operating room, where yes, they do put NG (Naso-Gastric) tubes in her nose as part of surgery.

Ah, the joys of a very aware kid with medical issues. When we discussed that we also see Dr. Jennings on that floor, things got better very quickly.

Sometimes you have to wonder what she really remembers of all of her time in the hospital.

This goes along with her Thanksgiving discussion with her Grandmother about a picture that she drew in the hospital in September that is framed on the wall: "I drew that in the hospital when I was in the big fluffy bed with the table that goes across."

I'd like to know what that shrinks would say about her hospital stories.

A Post Free Month

2009-11-24T23:16:00.001-05:00

We realized yesterday, with a little bit of help, that it has been more than a month since we have updated this blog. We would like to say that this is because our journey with short gut, tube feeds, Omegaven, central lines, g-tubes, and the rest of our average day has come to some sort of and end. Unfortunately, we can’t say that. In fact in some ways we are further away from an end than we have been in the past.

Apple picking

Hiding in the apple trees

I guess that things are so busy right now that updating this blog just falls off the list and by 10PM we just don’t have it in the tank to update things. I guess it is very similar to what got me into this blogging to begin with: I hated telling stories about Ellie and her condition without any emotion after the third phone conversation. The blog was great to share a best shot at an update and give everyone the best version. Now writing about Ellie’s very, very slow progress seems to be the same kind of thing.

Finding that perfect pumpkin

Her progress has been slow but good. We are back down to only 3 nights of TPN/Omegaven and only 1000mls a night. She has also been eating really well. We have found that when Ellie is eating well and tolerating her food well, we feel like the sun is shining even when it isn't. When she isn't, well then there seems to be cloud over everything. Lately it has felt pretty sunny around here.

Some highlights of the last month:

Potty Training- Ellie has decided that the toilet is a great thing all of a sudden. She rarely poops in a diaper anymore and is working on the pee when she isn’t overwhelmed by the IV infusion overnight. Unfortunately for us, that means one of us (most often Abby because Ellie likes to poop with Mom) is up for the day most days around 5AM. But on the upside her bum is very happy to be clean and even the most acidic short gut poops aren’t too bad for her. Now if we could get her to move to the toilet for peeing we would be in a really good situation

Fetch at the beach

Halloween- This year Ellie was a lady bug for Halloween. She really wanted to look like a "Real" lady bug so we broke out the sewing machine and turned her into a lady bug.

Pneumonia- For the last month we have been dealing with a nasty cold that has made the rounds among all of us. Ellie got the worst of this and last week ended up with what we like to call ‘running pneumonia’ last week. Running because even with lungs that ‘crackle’ she never slowed down, not once. Through the whole thing she lost a pound, one of those great pounds that we were so proud of her gaining after last summer.

We also learned that even bronchitis/pneumonia is a serious risk for kids with a central line because of the possibility of the bugs migrating into her central line. It is such a risk that we spent a night last week in the ER getting line cultures drawn and starting a cocktail of IV antibiotics. In by 7PM out by 3:45AM. Have I told you how much I love the portable DVD player? All cultures were negative and she back to her old self.

Pre-School- Ellie absolutely loves schools and the three mornings a week that she and her nurse Karlene go to pre-school are the highlight of her week. Even though she felt fine, her progressing pneumonia kept her out of school for a week and a half this month. We just couldn’t ask parents to keep their sick kids home to protect Ellie and then send her to school with an awful cough. Today she went back and never missed a step.

Over all she is doing great and very excited for the holidays. We are heading up to Maine for the first time since the middle of this summer. We promise to update more often!

Yup, she's a Brogan alright

2009-10-20T19:59:00.002-04:00

At 6:15 tonight, Ellie and I adjourned to the bathroom for her evening ritual: a good try at a poop on the toilet with a book for good measure, wash hands, brush teeth, rinse with flouride and off to get hooked up for her evening infusion and bed.

I had gotten one sentence into My Brand New Potty when she stopped me and told me, "No daddy. When there is an exclamation mark at the end, you need to Yell! Not just talk."

She is 3 1/2 and already a grammar Nazi with a need to read a book to poop.

Yup, she's with me.

Today she weighed in at 16.09 kg (35.4 pounds). That is a pound above her weight at clinic last week when we made the plan to go to 4 nights a week of TPN and 3 nights of saline. She is noticeably heavy. All good signs.

We hope that this aggressive weaning will encourage her appetite and thirst which will then move things along and let us wean some more. We will give this a few weeks and see how it goes but for now we are back to three nights a week without our old friend Omegaven. It is remarkably liberating to only set up the bag of fluids without the splitter or the Omegaven pump.

Place your bets, place your bets. Says my daughter.

Update October 4

2009-10-04T20:14:00.008-04:00

We realized tonight that it was September 12th the last time we posted any news. That is the result of a combination of things but mostly due to a combination of a busy new schedule, some work travela nd a nasty round of colds, we have been choosing to do other things like sleep when we have time rather than logging our lives. So shoot us. Winter is coming and then things will be cold, white and slow. Also I think that things were going so well we were afraid to put it in writing for fear that we would jinx it.

Not so sure of What to Think About the Scare Crows

School has been great for Ellie. Tues, Thursday and Friday Mornings she and Karlene get dropped off at school. Ellie goes to class and Karlene hangs out a full floor away but just a phone call away, in case anything goes hinky that the teachers can't deal with like a problem with her g-tube, her belly or worst of all, her central line. The kids are great and it is wonderful for her to get out and see other kids and teachers.

Apple Picking with Friends from Florida

The school also sent home a letter to all the other parents letting them know about Ellie and her short gut. It explained that a GI bug is a very big deal for her and asked the other parents to please be extra aware of this and not send to send their kids to school if they may have a bug. It also asked that the parents let the school know of any illnesses so that they may inform us. Them we will have the option of not bringing Ellie to school that day.
The director then will let us know as soon as she knows when a kid is sick, even telling us a week ago about a kid who had thrown up while Ellie was in school to give us the opportunity to come in and take Ellie home. We have also gotten a call a couple of times the afternoon before Ellie is scheduled for school with a health update which has led us to keep her home just once so far. Stomach bugs are a bad thing these days and we would rather have one day of home school than a free inoculation of gastroenteritis. As always, her teachers are very good and brave (even changing short gut diapers) but we are all happy that Karlene is there just in case. Peace of mind is priceless.

Ellie continues to ramp up in her feeding and less than a month after being discharged from Children's. She is back to eating a limited diet of soft foods, drinking about half of the formula that she was drinking before her troubles this summer and has surprised all of us by gaining a surprising amount of weight. She is 1 1/2 kilos (3.3 pounds) heavier today than when she was released in September. This week her weight gain earned her one night a week without TPN. We are starting on the road to a TPN free life. Again.

Touch a Truck Day

We have been leery of putting her on her feeding pump because it doesn't provide any feedback as to when she is full, like oral drinking will. We understand that constant exposure to formula is the best bet to encourage intestinal adaptation but right now we are still recovering from her dilation and don't want to aggravate her bowel with an unrelenting pump inflating her bowel. One of these days we will get brave and start the trickle of feeds from the pump but right now she is doing quite well eating and drinking when she wants to.

Perhaps the best news is that she is finally pooping quite regularly for us. Five or six times a day is the norm which, believe it or not, is thrilling for all of us. Lots of poops means things aren't backing up and her dilated bowel is likely recovering and getting its strength back. We will run with this for a while and then can start considering methods to slow her poops down but for now, let the poops come!

Other than that we are dealing with regular kid things, timing flu shots, and having great fun with our girl. Things are slowly returning to normal.

LOOK!!

2009-09-12T22:55:00.002-04:00

Look! It's a bird....

It's a plane....

It's SUPER ELLIE!!!

On her first real day of preschool.

This is her silly face, it is the face of choice right now.

Things are pretty much the same. We are enjoying or week off of med stuff. We hope the "nice and slow" approach is working. But, we will call Dr. Jennings on Monday to review. Until then we are having a great time and enjoying things just the way they are.

Tomorrow we are going to walk in the MitoAction Family Walk to raise awareness for Mitochondrial Disease. We have met many amazing kids and know many strong families who's lives have been touched my Mitochondrial disease and this is the way we can help. Check out the MitoAction home page to learn more. Our team is called U-Thrive!

Congrats to Liz and Hank on their new baby girl!!

So an NPO kid goes to preschool....

2009-09-12T15:08:00.004-04:00

Week one of preschool has been a smashing success for Ellie.

In the words of one of her teachers, she is 'a joy'. It's nice to know that someone else is a as big a fan of our girl as we are.

Ellie still isn't eating and is just barely drinking anything each day. She drinks about 3 ounces of elecare a day along with about an ounce of water. Some nights we see significant residuals in her stomach and some nights we don't. Go figure.

Having an effectively NPO (Nothing by Mouth) kid at preschool was a concern for everyone. Eating is a big part of the day in a half day preschool since snack is part of the the schedule. What would she do if she can't eat? Sit in the corner with her finger in her nose?

Come to find out, at this preschool, in addition to having some great teachers who seem to 'get' Ellie, their daily schedule is built to have a 'free form' snack on the fly. Whe she is ready to eat she can but for now she can keep on moving striaght past, or, as one teacher suggested, stop and have a 'special snack' of ice chips. Gotta love professionals.

So this worked out the typical days at preschool, but what about special events like birthdays?

No need to worry. Leave that one to Ellie, (who is not quite 3 1/2):

Yesterday was a birthday for a child in her class. The parents brought cupcakes. Even though she doesn't really like sweet things, she loves the idea of cupcakes and had even eaten a tiny bit in the past.

We were all were dreading this and Abby and I have discussed this with her teachers about ways to talk about it and distract her. we were all prepared for a meltdown when she couldn't eat just like you would expect when you tell a preschooler that they can't do something that everyone else is doing.

Come to find out that when the cupcakes came out, Ellie looked at her teacher and said, 'I like cupcakes. But my belly isn't ready for them yet. I think I will have some milk and some ice chips instead.'

She isn't 3 1/2 yet! At 36, i would be screaming bloody murder for my damned cupcake but Gut Girl gracefully took a pass and moved on.

Unbelievable.

Morale Booster

2009-09-08T20:40:00.006-04:00

With all of the lousy news that we have dealt with this summer and in the past few weeks, someone asked us the other day how we get through the long process of getting Ellie well again?

To this I offer exhibit A, Ellie's first day of preschool:

She is, quite simply, a glorious kid.

That goes a long way to offset the malfunctioning gut.

Patience

2009-09-07T19:43:00.002-04:00

We are home. Just barely, but we are home.

The stomach residuals are back.

Why this is happening is open to speculation. It may be the case that liquid isn't passing down from her stomach to her small bowel. Ot could also be the case that things are sloshing up from below. These are two crappy options and the cause has given us more than a little bit of anxiety over the past 24 hours.

Is it simply her gut taking an extrordinarily long time to wake up?

Is something still wrong anatomically that wasn't fixed in this past surgery? Is there a section of her bowel that is 'stupid' and screwing things up for the rest of her bowel? If it is anatomical, can this be 'fixed'?

Or is it one of those mysterious things that causes some short gut kids to simply stop eating altogether? we know some kids with short gut that fall into this category, an example of a case where knowing too much isn't always a good thing.

We are a long way from making any calls about the reason behind this slow recovery but we are learning that this recovery is taking a lot longer than it has in the past. We have been in touch with her surgeon this weekend and are already making plans for the next steps.

If only it could have been a simple fix...

So we are home. For how long is anyone's guess.

Just in case, we spent a glorious day today having home time with as much fun as we could squeeze in.

Let's try this again

2009-09-06T09:21:00.002-04:00

A tiny residual at midnight and none at 8AM.

It seems that things are getting in gear and the lack of things in her stomach this morning is a very good sign.

We are heading home today and will manage her bowel recovery from home.

Spoke too soon?

2009-09-05T07:27:00.004-04:00

Ellie did great with the ice chips and sips yesterday and last night we hooked her up to her enteral pump to pump in a ounce over night. Yes 1 ounce pumped in slowly over 7 hours. At 4:30 she woke up, pooped and asked to be vented.

Her belly pushed out over 2 ounces of fluid. Not good.

This means that she held on to the 35 we gave her and either produced another ounce of her own fluid or more likely fluid that was backing up in her intestines pushed backwards into her stomach.

Still not good.

So now we wait for rounds to discuss where we go from here. But most probably it will NOT be home.

I can't help feeling that this is our fault, we told everyone we were going home, we told Ellie, we told our nurse, visiting friends, and had ThriveRx come in and do a evening teach on how to do antibiotics at home. We should have known better.

HOME is the worst 4 letter word I know. If you say it too much you will regret it.

Ellie and I are hanging out watching Sleeping Beauty, again. She is happy and currently pooping, so things aren't all bad.

Doing well and going home?

2009-09-04T14:47:00.002-04:00

Ellie has been doing much better in the past two days. We got the right sensitivity for her UTI and weened her off of all pain meds. She has been up and moving. We took a big wheel ride to the garden and playground yesterday and today she has spent most of her time in the playroom.

We talked to Dr. Jennings about "the plan" for her feeds. He wants us to do as much by mouth as we can. Then supplement with the feeding pump. The goal at this point is not to ramp up her feeds and get off of TPN, it is let her bowels wake up and recover from the insult of the stricture. After a week or so we will start pushing and see how she does.

We thought we would be doing a slow ramp up over the weekend and then go home on Monday, but after talking to Dr. Jennings this morning, we are looking at tomorrow morning as our possible discharge.

We were surprised but also very happy. Hospitals are dirty places and we would like to get out of here before she picks something up. We do have to go home on IV antibiotics for her UTI. IV antibiotics since she is not really eating yet, and because at this point she may not absorb enough to make them work. This means we need our first "teach" on how to do antibiotics at home. Everyone was shocked when we said we didn't know how to do it and I think we have knocked on wood 50 times already today when we explained why.

Ellis hasn't eaten in 3 weeks so her bowels are going to need time to get moving, and time to regrow all that fantastic short gut lining of her small bowel. ( the absorptive layer of short gut bowel can be 3x the thickness of typical bowel) Give her a few weeks, and assuming this surgery was successful, then she should be back to her old self. I am very excited to get her home and do the recovery at home.

School starts next week and we have not been mentioning a date since we didn't' know if she was going to make it. But things are looking like she will be starting school with all the other kids. She may not be eating, but she will be there.

I will update when we know more.

Progress

2009-09-03T07:34:00.004-04:00

In the past two days we have seen steady progress in Ellie's recovery.

She is very close to being disconnected from her bionic partners altogether. Her epidural is gone, the heart and breaqthing monitors are gone, her foley catheter is gone (leaving just a uniary tract infection as a souvenir), the NG tube in her nose is gone (leaving just a nasty red sore on her nose):

The drainage bag for her g-tube is scheduled to be removed later today. If we can get away from the post-op iV fluids during the day and back to good old TPN at night, we could, in theory have a FREE GIRL sometime soon.

On the GI front, she seems to be tolerating her own digestive juices well which is a good sign and has even had some ice chips.. No bloating or distention. We think that a day or so of clamped g-tubes with nowhere for the fluids to go but down and we could start clear fluids- the first step towards feeding again.

This means that she can also brush her teeth again and use the fancy mint flavored sponge lollipops to wash her mouth.

Pain is still an issue and we are struggling a bit in the transition from very low doses of heavy narcotics like Dilaudid (which I have learned is 10 times stronger than morphine and 5 times stronger than heroin) to more conventional pain meds like tylenol. The trick is timing the weaning process to keep her happy. This sounds easy but sometimes pain comes at the four hour mark and sometimes at the 7 hour mark. The good news is that, for the most part, she is on long intervals between heavy meds.

Onward and upward. Gotta go play princesses with my girl.

Poop For your Birthday

2009-09-01T08:24:00.003-04:00

Normally this does not sound like a good birthday present, but for Gib...It was perfect.

He said that Ellie woke up this morning, farted and pooped. YAHOO! This means the NG tube in her nose can come out and she can start taking little bits of clears by mouth. This will is a huge step in the healing process. Sounds like a great present to me.

Happy Birthday Gib!!!

She's UP!!

2009-08-31T15:15:00.007-04:00

She is up and moving! We had to remove the epidural this morning because it was leaking so much. Your spine can only take so much liquid and Ellie's was full. When the epidural went so did the Foley catheter. That made for a much happier Ellie. This also meant that it was time to bring on the IV Diloted. Luckily she doesn't seem to get itchy from this pain killer, so it may be our drug of choice from now on.

This was Ellie for the past two days

This is Ellie today!

So we got up and out of this room!!!

While on the tour of the floor Ellie had the camera. So the following is Children's hospital from her point of view including a few self portraits. Enjoy.

We ended our tour at the playroom where Ellie got up and walked to her favorite toy. Walking is a big step, and now all we need is poop.

Let the poop watch begin!!

Precautionary Management

2009-08-30T10:39:00.002-04:00

After a moderately eventful night things are moving along nicely for our girl.

The name of the game in the first few days after surgery is always dealing with Ellie's pain. At various times in the first few days we deal with pain from: her surgical incision, pain from her bowel as it wakes up, bladder pain as it deals with the Foley catheter which can cause bladder spasms and other non-descript pains that come and go.

To manage these various forms of pain, Children's has a Pain Management Team which visits a few times a day and checks in. Although Pain Managers sound like they may be a bunch of sadists along the lines of this six-fingered man in the Princess Bride, they are a group of doctors whose job it is to make sure that she is comfortable-a noble job with no evil.

The heart of her pain management is an epidural in her spine that numbs most of her lower torso and treats almost every kind of pain (other than the damned bladder spasms). A thin wire tube runs from a special IV pump into her spine and like magic she is comfortable. If things are perfect, it looks like a piece of saran wrap on her skin with a tiny black wire that disappears into her back.

Epidurals are quite fragile, however, and in the past we have only been able to keep one in her for one to three days at most before it falls out.

Losing the epidural isn’t a question of if; it is a question of when.

Late yesterday afternoon after Abby had gone home for an evening with my dad (a recipe for fun if ever there is one), the nurses started to have some concerns about her epidural site. Over the course of the day yesterday, fluid started to leak from the epidural wire and collect under the clear dressing. The fluid that should be going into her spine wasn’t all getting there and the wire might be sliding out.

We were likely going to lose her epidural during the night- something that always seems to happen at 3AM when the on-call person is busy with another kids, the equipment is slow to arrive, the meds are slow to appear on the floor.

It leaves Ellie grumpy and in pain. Usually at 3AM.

It also seemed like an avoidable combination of factors. So I borrowed a concept from my day job and asked about it with one of Ellie’s best nurses- Precautionary Management. Let’s anticipate what might happen when her epidural fails, take some steps ahead of time to prevent or minimize the adverse effects of her epidural failing and maybe avoid the gap in pain management that comes between the epidural and the next tool in the pain management toolbox. She agreed with this idea, told me where the snags in the process were and we made a plan.

At 7PM with an epidural that was still moderately effective, we started to get things in line for what’s next. A special pump was ordered, IV lines were strung and meds delivered.

Just in case.

A far better option for Ellie than the middle of the night scream and scramble.

And, it was all for naught.

The leaky epidural keeps doing its thing and Ellie is still comfortable.

But the overnight was a lot easier knowing that the morphine is in the room, ready to take care of business.

Which leaves us in a similar situationas 24 hours ago. Ellie is confortable, sleeping a lot and watching Cinderella and Sleeping Beauty a lot. But we are noticing that she is far more lucid when she is awake which is a definite step in the right direction. It is nice to hear her voice again and hear her ask questions that are very Ellie:

"Daddy, why is there a tube in my noonie?"

"Daddy, when can we take tube out of my nose?"

"Daddy is the suppository like the good ones or the big one?"

Just your average conversations with a three year old, right?

Good Night

2009-08-29T10:32:00.003-04:00

Ellie is half awake and half asleep right now watching Sleeping Beauty. She had a good night with only a few awake periods. We did have to increase the pain meds in her epidural this morning. Since the increase she is doing better and seems comfortable.

It is weird for Gib and I, her reconnection surgery was 3 months ago, so this all seems way too familiar. For past surgeries we have requested to do bowel prep at home. But this time we decided to come in. It was a great idea.

We were able to get a room on our floor, request the meds and orders that we wanted post-op to make Ellie more comfortable, use Ellie's room as home base during the procedure and have a much more smooth transition back to the floor after the PACU.

The best move we getting the orders written for anti-itch drip before the surgery. In the past she has been incredibly itchy from the pain meds, even going so far as to rub raw spots on her face. We have discovered the Benadryl does nothing for her and a constant infusion of Nubain is the only thing that gives her relief. This time we started the infusion before she started to itch and it worked wonderfully. She has had next to no itching.

As for bowel prep, it did help that she had been either NPO or on only clears for the past 2 weeks, so bowel prep was a breeze.

Wait.. a breeze for us, Ellie still did not like it. No surprise there. We have started the practice of shopping before we go inpatient and making sure she gets a present after any especially unpleasant procedures. This has helped a ton. As soon as we are done with a procedure she will stop crying and ask what her surprise is. Distraction is a great thing.

Both Gib and I stayed here last night, taking shifts sleeping in the playroom. Amazingly we both feel pretty well rested.

Now we all are in for a day of rest, recovery and lots and lots of princess movies. Once again sorry for the lack of pictures. We are working on that.

Back to the floor

2009-08-28T20:18:00.005-04:00

We are back upstairs, fully wired for post-op recovery.

Right now she is sleeping comfortably with:

Two new IVs in her arms,
three wires for a heart/breathing monitor,
a dreaded N-G tube for her stomach,
her g-tube draining to a bag,
a foley catheter for urine,
an epidural in her back
and her good old central line

Fully wired, but very comfortable.

Interesting factoid of the day: the recovery nurse needed to double check with us about her CVL, (central IV line). Apparently it has been in for 1,116 days.

Yup, that's right more than three years with this line.

Please knock on wood for us right now.

All Done

2009-08-28T17:48:00.002-04:00

We just finished talking with Dr. Jennings.

All went very well, the stricture was clearly causing issues. He removed the stricture without losing any intestinal mucosa (the part hat absorbs nutrients), did the fancy cut and resew from the diagram and closed her up.

He saw some significant scar tissue in her belly but tried to avoid disturbing that which would complicate her recovery.

The best news is that after he repaired the narrowing, he could see fluids flowing through the affected section into her colon.

Nice.

She is heading to the PACU right now and we should be called in soon to sit while she wakes up.

4:45 Update

2009-08-28T16:47:00.003-04:00

No news from the OR. The nurse liaison called a little while ago and told us that they finished prep and began the surgery at 3:30.

We will get another update around 5:30.

That puts on schedule for a very late return to the inpatient floor after a stay in the PACU (Post Anesthesia Care Unit).

The recipe for a long night.

A Versed Cocktail

2009-08-28T14:35:00.001-04:00

She's in. A double shot of Ativan and Versed and she was feeling fantastic as Abby dropped her off in the OR.

It should take 3-4 hours depending on what their explorations find in her belly.

More when we know it.

Surgery Friday

2009-08-26T19:13:00.005-04:00

Dr. Jennings was back in the office today and after looking at her UGI and manipulating his busy schedule has booked Ellie for surgery, most likely some version of what is called astricturoplasty to relieve the narrowing in her bowel that is causing things to dam:

Friday at 1:30.

We check in Thursday around lunch for a night of prep to get all of that nasty barium chalk out of her poor bowel and then away we go.

Where You Know the Radiology Tech by Name

2009-08-25T21:46:00.005-04:00

Monday morning Ellie had another round of residual fluid in her stomach. About 4 hours worth of Pedialyte was still there when she woke up which told us that, although she had some success with her feeding experiment on Saturday night and Sunday, things are definitely not better. The problem was not solved by bowel rest nor was it a case of her bowel being slow to ‘wake up’ after her endoscopy.

Something is still causing trouble.

We stopped the pump and made her NPO again while we waited, worried, imagined what it could be. Allergies? Irritation? Inflammation? Dead bowel? Some mystery ailment?

We also got in touch with Dr. Jennings. His advice was to wait until the Upper GI (UGI) study that was scheduled for Tuesday afternoon and see what it shows us.

Today we took Ellie in for her UGI to see her favorite radiology tech named Jackie who is just wonderful with Ellie. As always, it was freezing and we forgot out sweatshirts. Again.

That makes three UGIs this summer and four contrast studies since June. Yes, her Geiger counter is probably humming these days. But what is the option?

We were advised to bite the bullet and use the chalky barium since it provides a better view of her bowel despite its horrible after effects that virtually clog her plumbing until it passes. The images were remarkably more clear than the UGI from a week and half ago.

The images showed us bowels in significantly worse shape than what we saw last week.

The first thing we saw is that her small bowel is quite dilated. Again.

With a load of barium passing through, it looked alarmingly similar to her bowel pre-ostomy (November, 2006!). When the bowel was fully loaded with contrast it looked like we were looking at two stomachs.

Oh shit. Not again.

F#%^! F#%^! Double F$%#! What word can I say that is worse than F#%^?

As you might expect, this caused some serious Oh Shit! looks between Abby and I in the radiology suite.

Once we convinced the radiologists that dilated bowel was not "normal" for this short gut kid, the radiologists did their thing, manipulated her belly and saw something peculiar. A possible cause of the dilation is a distinct narrowing in her bowel that is slowing things down as the barium worked its way through. They just followed the dilated bowel down until they found normal bowel and then investigated more.

Dam. Literally.

This, believe it or not, even though it will likely lead to another surgery.... Was welcome news for us. Fixing a medical problem like an allergy or nerve problem can be very difficult to treat if treatment is available at all.

An anatomical problem can be fixed. We hope.

Dr. Jennings is back tomorrow and we hope to get in touch with him and pencil in the next chapter as soon as possible to, as the ad says, Get in. Get out. Get on with things.

Pre-school starts September 8 and Ellie is raring to go and play princesses with he other kids.

Oh yeah. We lost our digital camera during our stay at Children's last week. Sorry for the lack of pics. We promise she is still just a cute and happy as before.

Home Rehab

2009-08-23T16:28:00.003-04:00

Friday we tried Ellie on clear fluids (pedialyte) at a very slow rate of (20 ml and hour) to see how her system would react to something going down for the first time in more than a week.

After an overnight at this rate Abby checked her stomach contents and found that she still had 170 ml in her stomach, a sign that things weren't working and a bit of depressing news to us.

Checking stomach contents is quite simple with Ellie's g-tube. Simply attach the extension to her g-tube to an empty 60ml syringe, attach the extension to her g-tube and see what comes out. Voila! We can see what has passed, what is still there and what may have sloshed up from below. We can also make the choice to return the contents to her stomach by letting gravity pull the fluids back into her stomach or discarding the fluids (and effectively vomiting for her).

They joys of access. Without this handy tool we would be in amuch worse situation and looking at the dreaded N-G (naso-gastric) tube for her stomach access. We love her button.

Yesterday morning we stopped her fluids and spent most of the day thinking and worrying and speaking with her doctors about what would be causing this. After an in-person talk with Dr. Jennings (on a Saturday!) we agreed to try again and see if things had woken up with the understanding that if things weren't working that we would get an upper GI contrast study done sooner than Tuesday to investigate the cause.

At 1 o'clock yesterday afternoon Ellie went back on pedialyte at 10 ml-1/3 of an ounce-per hour. At 5 PM there was nothing in her belly and we ramped up to 20 ml an hour for the overnight. At 9 and 11 PM, and 1, 3, and 6 AM today we checked her stomach and her belly was clear!

When rounds came though this AM they were very happy with this news as a sign that things had jump started so we bumped up to 30 ml/hour. We also started things in motion toward discharge and at 10:30 this morning, ahead of the mythical 11 AM discharge time that nobody ever seems to meet.

So we are out the door and home with the understanding that things are going well but they want to see her if she shows any signs of her bowel slowing or misbehaving with increased stomach contents, belly distention, pain, etc.

The 21 miles from here to Children's is close enough to be here but not so far that we can't be there ASAP if needed.

This afternoon she went up to 40 ml/hour of pedialyte (her full rate) and we will see how it goes before bed.

If things are still working, we may try some dilute Elecare tomorrow.

Not Tolerating

2009-08-22T14:18:00.003-04:00

We started Ellie's on pedialyte yesterday via pump through the G-tube. The pump ran all night and this morning she woke up with a very distended belly and when I went to vent her I got almost all of what we gave her pushed back at me. So she did not tolerate the feeds.

We emailed Dr. Jennings this morning and then he came by for visit. We gave her a bit of a rest and then re-started feeds at a lower rate. After about 5 hours we increased again to where we were last night. she is napping right now, we will vent her when she wakes up and see how she did.

We were given the option of getting discharged last night, but decided to stay for the night and now we are glad we did. Bloated belly and not tolerating food is what got us here over a week ago. And now we are back to the same problem.

We still think that the problem is the small bowel. Since we got admitted we have done a lower GI, to look at the colon and it looked good. Then an endoscope yesterday to look at the throat, belly, the very beginning of the small bowel, anastomosis, and colon. Everything looked good. So the last time we looked at the small bowel was over a week ago, with the upper GI last week that did not look good.

We are hoping that she tolerates the pedialyte today but if not, we will take another look at her small bowel with another upper GI. I honestly don't know what to wish for... for her to tolerate her feeds and we go home with no real answer? or for her to not tolerate and we get an answer, and an idea of what to do next? I'm starting to feel like I might be going a little crazy, but only just a little.

Answers but no solution

2009-08-21T13:48:00.004-04:00

After a long wait, Ellie's endoscopy went off early this morning. She went under around 11 and was back out around 12:30. She came out of anesthesia just fine and is back in her very fancy room groggy but doing well.

The endoscopy told us a few things. First, from below her colon looked good and the insides of the anatomosis looked good with no apparent narrowing or kinks that would be causing food to slow down. Equally good news is that the tissue around the reconnection looked pink and healthy.

From above the inital portion of her small bowel lookes good as well. One problem with the upper endoscopy is that is can't reach all the way to the end of the small bowel but what the doctor saw looked nice and happy. They took samples for bacterial cultures and biopsies to tell us more in the next few days.

So what they saw today all looked good. Which is good but doesn't give us any answers on why things aren't working. Which leaves us with the same puzzle with a few more pieces filled in.

Abby and I have each come up with some amateur theories on why this is happening and we will hopefully get a chance to discuss these with Dr. Jennings sometime soon. He was in the OR today and saw the scoping and likely has much more informed ideas as well.

Ellie is happy and watching Cinderella for the afternoon.From there we will come up with the next steps in the plan and see where we go from here. It will likely inckude slow feeds by pump tonight, going home tomorrow tomorrow and the a follow up Upper GI study next week to check on the status of her bowel.

"I'm sorry, Daddy"

2009-08-20T22:32:00.005-04:00

That is what Ellie had to tell me tonight at 10:15 after I had woken her from a sound sleep (no nap today) in her warm bed, carried her into another room and held her down while a nurse gave her her third enema since 4 PM. Bowel Prep for today's endoscopy.

"I'm sorry, Daddy."

I don't get choked up very much about these things but that about did me in.

No. Kiddo. I'm sorry.

She was asleep again by 10:20, sweaty and redfaced.

It took a lot longer for me to go back to sleep.

Change of date.

2009-08-19T18:00:00.005-04:00

Our date for the scope got pushed back from tomorrow to Friday. So we are in for more of the same. We will do a very small amount of bowel prep since she has not eaten in a week. So we are in for more of this..

Playing on the playground

Flight for life helicopter flying over the play ground

All the GI docs that can do the balloon procedure are either on vacation or out of town. So wait we must. We are having fun and Ellie is happy. But we a getting a bit sick of waiting.

More waiting.

2009-08-19T11:34:00.002-04:00

We had a very mellow day yesterday, starting before the sun came up. Ellie and had a good time watching the sunrise

and doing some arts and crafts.

We now have a very "Fancy" room thanks to Ellie's new art and her gramma's special presents.

This is Ellie's favorite way to watch TV.

Her grandpa and gramma came for a visit and a tea party. It was a very uneventful day. We had a few run ins with cocky residents but then we talked to Dr. Jennings and made a plan. We have a scoping appointment tomorrow at 11am. They will take a look and see what they can see, test for bacterial overgrowth, and if possible use the balloon to widen any narrow spots. Even though the enema showed us nothing we all still believe that there is something wrong.

So today we just do some more waiting. A few more laps of our floor, the 2nd, 1st and basement floors, and trips to the garden all Ellie's big wheel. She is happy and doing well.

3rd time is the charm

2009-08-17T19:22:00.003-04:00

Ellie finally did some good pooping this weekend and cleared out all the contrast from Wednesday. So we were able to do the study of her large bowel today. Usually this is not a nice experience for Ellie or for us. Contrast enemas are fun for no one, but especially not for anyone that is missing their ICV (Ileocecal valve). But we had a long talk with the radiologist and the tech and also got Ellie some Lorazepam to help with pain and anxiety. And the test went very well.

But bad news is that they did not see a blockage, narrowing, or signs of adhesion. So we still don't know anymore than we did last week. We are waiting to hear back from Dr. Jennings about what the plan is from here. Gib and I would like to scope her because we know that something is wrong but now what.

Ellie is doing great. No shiner from her fall yesterday. Currently she is asleep and doing very well.

We will post more tomorrow when we hopefully will know more.

Good Day

2009-08-16T16:15:00.002-04:00

Ellie is doing great. We did discover the cause of her conk out yesterday morning. Blood sugar. We didn't think that it could be the cause since she was on D18 in her TPN and to have low blood sugar 15 min after ending the infusion having cycled down.

But she did it again this morning and we tested her blood sugar. It was 54. Normal is around 100. So she was very low. Our theory is that when she is eating she can handle the cycle down with no problem, but when she isn't eating, like now, we need to cycle down over more than an hour. We will try that tomorrow and see what happens. Her sugars did come back up after about and hour.

We had a good day. Ellie looks way too good to be in the hospital. We had a great time playing in the garden and goofing around.

This is how Ellie was the entire time we were exploring the hospital today, running ahead and leaving us in the dust. The only bad part was about 5 seconds after I took this picture she fell and hit her nose on a stone step. She just might have a nice shiner tomorrow.

Gramma and Grandpa came for a visit as well.

Change of plans...Again.

2009-08-15T15:37:00.002-04:00

Right now I am watching Ellie dance around our new room on 10 east at Children's Hospital.

This morning she woke up at 6am (like she usually does), we unhooked her from TPN and then about 15 min later she said she was really tired and wanted to go to bed. I took her upstairs and she was asleep before her head hit the pillow at 7:15am. This was not normal. We called Dr Jennings, woke him up (sorry!) and he told said it sounds like it is time to head in.

So, we spent 6 hours in the ER and are now hanging out in a shared room on the floor with all our favorite nurses. Ellie's white cell count and CRP are normal so it looks like we are just looking at the GI issues. We did get another x-ray of her belly and it still has contrast on it. Ugh.

Ellie is doing great now, she is very excited to be "in the big soft bed with the table that goes across." We have been down to the garden, picked a great Cinderella carriage balloon and we are now watching Cinderella. This will be the norm until Monday afternoon we we try the enema again.

Gib's folks have come down and are staying at our house for support for Gib and I and to help take care of our boys( Gus the wonder dog and my sisters dog Nicky).

Home for the Weekend

2009-08-14T17:01:00.003-04:00

We are back home. YAHOO!!! Sadly it was because there was still contrast in her colon from 2 days ago. But Dr. Jennings was happy with how well Ellie was doing considering she is not eating and said we could manage her at home.

So here we are, at home and loving it. Ellie is doing really well today after a very large TPN bag last night. She has so much energy and is just as happy as we are to be home.

We do have an appointment on Monday to try to do the contrast study again. They told us to come ready to be admitted again. So now we have all weekend to relax, and do as much fun stuff as we can.

lets try this again

2009-08-14T07:53:00.003-04:00

So, now the plan is to try for the lower GI study again today. The hope is that she will have absorbed all of the old contrast and we will be able to see what is really going on. We are also going to be admitted after the study. We can manage her at home but with the weekend coming and the fact that it is easier to get a scoping/surgical slot booked when inpatient, we decided it was a good idea.

Ellie is still in good spirits, it is hard to remember when looking at her that something is wrong. She is paying with play dough right now and has been up and singing since 6am.

The only reminder is that occasionally she needs to be vented and what comes out is dark green. This is the color that makes all parents of kids with GI issues cringe. Dark green = things are not good. That is the color of what comes out of her bile duct. It should mix with food and then change color. This all happens in the first part of the intestines, you should never see dark green in the stomach,.... unless something is not right.

We leave for the hospital at noon and we will post again as soon as we know more.

Bad and Good

2009-08-13T15:15:00.002-04:00

Bad: We arrived all ready to do the lower GI study today but, the contrast from yesterday's study was still in her and hadn't really moved anywhere. Even though we used the special water soluble contrast, it is still in there. This means that she is almost 100% blocked. Dr. Jennings came down and we talked about our options.

Endoscope from below to check out what is going on at the anastomosis, then use a balloon to dilate the connection if possible.
Surgically fix the problem

We choose option number 1. For now. If we can fix this without surgery that would be great. But we will be ready for option number 2.

So for now she is basically NPO (nothing by mouth) and on 100% TPN until we have an appointment for the endoscope.

Good: WE ARE HOME. We get to do all this waiting at home! Ellie gets to hang out in her new bedroom and play in her own playroom. And Gib and I get to sleep in our own beds and have home court advantage when caring for Ellie during this time. Home, when you are home it is a great word, when you are inpatient it is a word we try not to talk about.

I have to go snuggle on the couch and watch Cinderella with my Cinderella.

No news..Is not always good news.

2009-08-12T21:30:00.013-04:00

Again, we have to apologize for not posting earlier.

We used to say that when it came to us, no news means good news. However, in the age of reconnected Ellie, this just doesn't seem to be the case. The reason we haven't posted is because we haven't had a clue what was going on and with everything in such relative chaos, we didn't have any clear ideas to report or the energy to report them.

We have known that after Ellie's reconnection surgery in May we would be looking at a completely different girl and everything we knew about her bowels would go out the window.

Oh, how right we were.

We had weeks of Ellie eating anything and everything we put in front of her, with great poops and weight gain. Then, all the sudden, we would get vomiting, and intolerance of all foods. This continued all summer; 1 week bad, 1 week good, 1 week only okay. We also recently started to see a new bloated and distended belly-she started looking and feeling like she swallowed half of a small watermelon.

Following what we know about short gut and given the time that had elapsed since her surgery we started thinking Short Bowel Bacterial Overgrowth (very common in short gut kids), stomach bugs, C-Diff, and allergies. So we tried everything. Cycling antibiotics for overgrowth. Removing all solids, then reintroducing them very slowly. Limiting her diet, pushing her to eat and poop a bunch. We saw some signs of success and would join the Cipro fan club only to have her slide backwards.

Finally after a few recent rounds of barf-o-rama, we started thinking that something might be wrong with her plumbing- a bowel obstruction. Today we went in for her second Upper GI contrast study of the summer. We almost didn't do it since we ended up in the ER two days after the last one. They are very hard on her gut. But we are very glad we did.

3 Hours after the contrast was added to Ellie's belly through her G-tube, the contrast still had not moved from her small bowel to the colon. In the past we have seen this time be as short as 30 minutes.

Enter super Mom with Dr. Jennings on speed dial.

10 minutes later he was in the waiting room with us and explaining what he saw: obstruction or narrowing of the anastomosis(surgically created connection between small and large bowel).

This means that the food and fluids that have not been able to go down have been backing up in her small bowel, and wait for it..... dilating her small bowel.

%$#@&*^! ANASTOMOSIS!!!!!!!!

(This statement really best yelled and while shaking your fist in the air.)

Yes, this is the problem we have had for... um,..for.ever?

First when she was inpatient before the ostomy and then after when she had the ostomy and we were trying to get more stool to go down her colon.

So here we are again. Hopefully not back at the beginning but the view is eerily similar.

We head in tomorrow for a lower GI contrast study through a contrast enema (oooh!). If we still see this problem then we will probably be admitted to wait for a surgical spot to fix the narrowing. As we finished talking this afternoon Dr. Jennings was toying with idea of setting us up with enough IV hydration fluids to compensate for the lack of any food or liquid going through her gut and letting us go home for the weekend and then come back on Monday for admission and sugery. We can hydrate her here as well as in the hospital so if a surgical apot isn't open until Monday that sounds like a great option. Ellie does best at home and biding our time in the hospital with a happy girl is tough duty.

All this does mean that Ellie is off of all solid foods. She can have small amounts of clears but not much as most everything is backing up. Not really that easy but I think she has been feeling pretty yucky over the past few days and this will make her feel better. Looking back at the summer, this would explain almost all the problems we have so far.

After Dr. Jennings left Gib and I were pretty sad. The idea of another surgery, and hospital stay is not something we look forward to. But on the flip side, it is an answer to a question that has been beating us up all summer. Now we know what was happening and hopefully we know how to fix it. Hopefully.

So now that I have said all that. I must say that Ellie has been great through this all. She always amazes me with her strength. She has been happy and up to all her old tricks through it all. She hasn't had the energy that she used to and hasn't ridden her bike as much as she used to, but we have still had fun.

Here are some fun pictures of Ellie at Abby's sister's pool yesterday. Just before the latest barf episode that drove us to get today's tests :

HOME

2009-07-14T00:42:00.001-04:00

We are home!! Discharged this afternoon. Ellie is doing well, still not 100% but better. We will be on rocky ground over the next few days but we will be home.

Back to her old tricks

2009-07-12T16:30:00.006-04:00

I finally went home last night and Gib stayed with Ellie. I was greeted when I got off the elevator by the old Ellie. The squealing, laughing, running, singing and giggling Ellie. It was great.

Ellie and her best funny faces

She does not have a line infection. Gib lost the bet. When we were admitted I thought it was a GI bug and Gib thought it was a line infection. So now Gib has to scoop the dog poop out of the back yard for a month. He he he he he

All the stool cultures have come back negative so far, but there are still a few tests that are pending. So we are still on contact precautions which means no playroom.

So, no scary line infection, no scary norovirus. Gib is not allowed to do diagnoses any more. He has such a flair for the dramatic that he tends to lean toward the scarier diagnoses. But in reallity it looks like a simple GI bug and some bacterial overgrowth.

She woke up this morning had some eggs, bacon and some Elecare. Then for lunch she ate some noodles, chicken and Elecare. We did take the oportunity of being here to try vanilla flavored Elecare. It was not a hit. Ellie still prefers her Elecare plain and unflavored.

So we are preping for going home tomorrow and keeping our fingers crossed that she keeps doing well.

A kiss from Sleeping Beauty

2009-07-10T20:26:00.002-04:00

Here is a video that finally uploaded to YouTube for us of Ellie at her happiest last weekend:

Pure bliss. Watch it over and over again for maximum fun.

This video does a great job cheering up the girl while we wait for results.

Speaking of which, so far there are no positive cultures from her blood and the GI doc now is thinking norovirus or rotovirus which seem to make a lot of sense considering the symptoms:

Nausea.
Vomiting.
Diarrhea, and
Abdominal pain;
Loss of taste.
General lethargy,
Weakness,
Muscle aches,
Headache,
Low-grade Fever

As far as we can tell she is batting .900 with these symptoms. Everything but a fever.

No wonder she tells us that her food tastes bad.

Ugh.

A quick bonk

2009-07-10T01:29:00.002-04:00

For a long while after Ellie came home in December of 2006 we kept the 'go bag' all packed a ready for an unplanned trip to the hospital in case of a line issue, a sick girl or a range of other issues that could send us east bound to Children's.

After a few years of smooth sailing, we let the bag go, took out Abby's PJs and toothbrush and ultimately put the whole bag in the closet.

This afternoon we had to 'ring the alarm' for the first time in long time and for a about ten sweaty minutes I cursed every item that ever left that bag.

It all happened like this. Which may seem dull from a distance but was definite not so for us.

first off, Ellie has been barfing for us every now and then for about two weeks. Usually first thing in the morning but also during the day she will give us a funny look or ask for us to 'vent her button' (attaching a tube to her G-tube button and letting out gas or excess liquid to relieve the pressure) which is usually followed by a significant barf.

Yesterday Ellie had an especially large and explosive barf while I was off educating celebrities and she ended up at Children's for a barium study to check for kinks, obstructions and other problems with her newly attached bowel. All signs were good and the doctors even noted that her bowel looked better than it did pre-op in May.

This was good news but to get that news it involved putting a lot of barium chalk into her fickle gut, barium that could turn into constipation or other probelsm if it was left in there. A series of enemas (ouch), and suppositories cleaned her bowel out pretty nicely but left her a bit dry by lunch today so we hooked her up for a naptime round of hydration to help her catch up.

She napped until 4:20 and came off the IV around 4:30.

Taking her off the IV is a standard routine: Stop the pump, unhook the threaded conenction, wipe with alcohol, attach a saline flush and push in 10ml of saline, detach, wipe again, attach a heparin syringe and add 5ml of heparin to lock the line and prevent clots.

around 4:45 we noticed that Ellie wasn't quite awake or perky like most days and was, in fact, prone on the couch, moving toward sleep. She was also quite sweaty on an otherwise cool day.

We tried perking her up but she told us that she felt bad, wanted to barf, and wanted to go back to sleep.

Something was wrong with the happy Ellie.

It took us about 5 minutes to realize this and make a call to her surgeon to tell him that we were coming.

[Insert frantic scrambling and packing here]

Along the way to Children's for good measure Ellie barfed for distance and by a little past six we were in the ER expalining Ellie to the residents who had been on the job a total of 8 days.

Part of the diagnosis was drawing blood cultures from her central line- a very similar wipe/flush/wipe/f;ush operation. Curiously, we saw a similar result in a sweaty Ellie who became very tired and lethargic after the flushes.

Aha! we said to ourselves, we've read about this: Bugs living in the central line tube get dislodged when the flush happens, spreading bugs into the bloodstream and causing a reaction, a fever and lethargy.

So with that intel and self diagnosis but Abby and I, the docs admitted her and discontinued the use of her central line until we know what the cultures say. They may also say absolutely nothing and then we go looking for a different cause but for now, considering the significant risks of central line infections and general sepsis, we treat that.

The vancomycin starts tonight through her fancy new IV line in her hand and Ellie is comfortable in the very same bed we left at the beginning of June. She woke up in the tranfer from the ER just enough to see the room and tell us 'Oh good, the big room with the fluffy bed!'

She isn't acting sick but is very tired, groggy and generally not the girl we know.

We are crossing our fingers that we caught whatever it is in time to keep the line working.

From the action of Disney to the stagnant waiting of the ER in one short week.

Never a dull moment

By the way, to the scumbag who stole our towel from the top of our car in the Children's parking lot tonight while we were inside: I hope you enjoyed the copious load of Ellie barf that was wrapped in that towel.

Gib in the News

2009-07-07T21:32:00.002-04:00

As many of you know Gib works for a ocean conservation organization called Oceana. Today he spent the day with the new member of their Board of Directors, Sam Waterston. You might remember Sam from that little show, Law and Order. Sam has a strong interest in the waters and the fish that live off the coast of New England and that is Gib's specialty.

Tomorrow Sam is being interviewed by the CBS Morning show and Gib will be there as well. Now all you may see is the back of Gib's head but keep an eye out and you might get lucky. I think they will interview Gib as well, but Gib does not agree. He also doesn't know if it will be on tomorrow or the next day but hey if you are near a TV tomorrow morning or Thursday morning, take a peak and see if you can gave a Gib sighting.

Oh yeah, Ellie is fantastic as usual. :)

We're Back!

2009-07-05T08:35:00.016-04:00

We managed some beach time and a great trip to the Magic Kingdom. Gus had a very exciting time while we were gone, but more on that later.

Thanks to the good folks at JetBlue we got in to Boston early last night and got home around 10 last night. A very successful first adventure in the world of air travel. We have new respect for the good folks who fly with their kids to get Omegaven.

On the last day of Oley the weather cleared up a bit and so we put on our suits and raced out to the beach to get our girl some good beach time.

The waves were pretty big but she loved it. Much better than last year when she ran screaming from the waves.

Ellie practicing her Karate kid moves

Ellie discovering the little clams that live in the sand.

Day at the beach down now time for Disney!!!

Disney was fantastic if a bit overwhelming for a three year old in 92 degree heat with about a million people on hand to see fireworks.

Disney has a special program for people with disabilities that isn't on their website. Another mom at the Oley conference told us about this and it made the difference for our trip. This program let us identify Ellie's risk of dehydration and gave us a special 'Red Card' that allowed us to skip lines in the heat and get Ellie on rides ASAP. Right up the wheelchair ramp, past a sea of scowling moms and dads and onto the ride.

If anyone griped out loud we joked that we were ready to ask Ellie: 'Ellie lift up your shirt for the nice man.' we met other families with a rage of issues and they all said that this program was the difference between going to Disney and staying home. Email us if you want more details.

On the Dumbo ride

Cinderella, Belle and Sleeping Beauty all need gold stars for the day on Friday. Around lunchtime on Friday we went ot the Princess Hall of Fame to accomplish our only goal for the trip to Disney: Ellie meeting her favorite princesses. Now I know that it is their job to be bubbly and nice but these three really went above and beyond for our girl.
I am convinced that I could see the moment that Cinderella saw Ellie's central line dressing and catheter and from then on she turned it on even more. Wonderful, simply wonderful.

How do I get a letter of thanks to them without sounding like a stalker? Dear Cinderella, Belle and Princes Aurora....

On our way back to the hotel for nap time, ended up that this was the only nap she got as she would not stop talking about the princesses.

Last ride of the night, Dumbo was one of her favorites

This is Cinderella's castle right before the fire works when off.

We also learned that Disney has the best fireworks, even if you only see them as you run a petrified little girl out of the park and watch the finale from the monorail.

Other things we learned:

Parents need to check their plans at the door when doing Disney with a three year old on TPN. we had lofty plans to do two parks in two days and then fly out at the end of the day on the second day. This would have worked just fine if Ellie wasn't three and her TPN didn't need to stay cold and.... we changed plans, skipped the second day and had a great day yesterday instead.

Jet Blue is fantastic. The TVs are just the beginning. Turns out they check extra bags with medical equipment for free. we like free.

For all of the criticism that they get, there are some excellent TSA agents out there. We called ahead to the airport the day before our flight and at 5 AM on Monday we were met by a very professional supervisor at Logan in Boston.He asked some simple questions about Ellie and escorted us and a carry-on that was full liquids, gels, aerosols, scissors, needles and pumps that can't go through an x-ray through security.

We are all exhausted but happy and healthy (although the timer on the central line infection won't give us the all clear for another 72 hours).

Gus had a special adventure while we were gone. we are still sorting out the details but it involves bolting from a dog sitter, finding his way a mile through the woods, getting picked up by a stranger 12 hours later, transferred to our neighbor, spending a night across the street and finally coming home late last night. He is as tired as we are but we are all home. Anyone know a good dog sitter in MA?

Gotta go and feed the girl. Eating has been an adventure this week to say the least but Ellie has done well enough and maintained her weight. Restaurants are fun but distracting. What we need now is a few weeks at home.

Ah, home.

Washed away at Oley

2009-07-01T21:03:00.009-04:00

Greetings from the washed out Oley conference in soggy St. Petersburg, FL.

Our first sir travel experience was flawless and the research that Abby did doe a work proved to be spot on for air travel with TPN. A good TSA guy is rare but worth their weight in gold expeciallt at 5AM.

JetBlue. Cable is magic.

The story of the week is rain. Lots of it. Like near record, Led Zeppelin 'When the Levee Breaks' rainfall days- today Tampa got close to 5 inches of rain just today.

Sandbags? Those don't look like FEMA bags..

Glad we remembered the raincoats on the way out the door. Really glad that we brought sunscreen from home instead of forking over all that $$ for stuff we won't really use. We have still managed to get outsode every now and then but it has been pretty soggy:

Oley has been a good trip. Abby is here for work with NutriThrive and is officially a member of this year's Oley faculty since she gave a talk about how to navigate through a short bowel clinic appointment.

Since Ellie had no interest in the Oley daycare, it has been a Gib and Ellie travelling circus for two days. Which has been great since Ellie is the best partner in crime short of her Mom. We have been everywhere together this week and she has been just wonderful.

I even took her to the hotel bar tonight to get my first beer of the trip tonight . I stopped short of letting her order for me but was really tempted to let her ask "Sam Summer, Pwease!" Ah, good old family values.

Even without seeing a lot of talks we had a great time seeing families of kids with short bowel and other digestive issues including afew that we had corresponded with for a long time before meeting this week. Seeing Ellie run around with 2-3 other kids with backpacks was good to see and in the future it will be good for her to know other kids with similar equipment even if their diagnoses are much different.

We hope the weather gets better tomorrow. We are taking the plunge and bringing Ellie to see Cinderella at Disney until Saturday when we fly home. Seeing all of these kids made us realize that despite her progress things are still quite uncertain for Ellie and we need to seize this opportunity.

Besides, think of the look on her face when she sees her cast of princesses? we'll be sure to take lots of pictures.

Homeowners claim: Pump vs. Window

2009-06-19T22:08:00.003-04:00

So Gib left today for a fishing tip with his dad and brother. They do this every year, and I love that they do it. I honestly think Gib needs to spend more time fishing. I may regret that statement soon, but oh well.

I discovered tonight that even though it has only been a week or so since Gib was gone last, I am out of practice. I didn't get Ellie down for a nap until 2:30, and then didn't get her hooked up until almost 8:30 tonight. That means she will still be hooked up at 8:30 tomorrow and then she also decided to finally fall asleep about 15 min ago. Yes, that would be 10pm.

It was a combination of me being slow, Ellie not having an appetite because she is getting a cold, the sun finally coming out for the first time in two days at 6pm (we just had to go puddle jumping), a pump malfunction and Ellie wanting to talk to daddy on the phone. I have to say that other than really, really, really wanting to chuck an Omegaven pump through the window it was a good night. All I have to say is thank God for back up pumps.

Ellie is doing well. We are on only 4 nights of 500mls of TPN and 3 of D5. It is a huge change from the 1500 we were on before. The bags are so small. It feels weird giving her so little and I feel like there is no way that can be enough. I also feel like I am starring at her all day just waiting for the sign of dehydration. But so far so good. She is getting a cold so we will see how long this lasts.

Bottom line. We are good, busy, frazzled but good.

Way to go Omaha!!!!!

2009-06-17T15:08:00.002-04:00

Nebraska Medical Center is one of the bigger short bowel centers in the country. And they have started an Omegaven trial. YAHOOOOO.

Here is a quote from the article:

"The Nebraska Medical Center recently began giving it to two children and intends to give it to Braxton and others soon to study its effectiveness. Dr. David Mercer, a transplant surgeon at the hospital, expects to enroll more than 100 children in the study over the next two to five years."

Read the whole story here

http://omaha.com/article/20090611/LIVING/306119953

On the home front, no news is good news Ellie is doing really well. We have cut her night time hydration down by 2/3 and she is starting to eat more and more solid foods. We are relearning what she can tolerate but she is doing well. More later...

HOME!!!

2009-06-05T13:20:00.004-04:00

Need we say more?

Cross your fingers, Cross your toes

2009-06-05T08:14:00.004-04:00

We have been told that today is the day. So knock on wood, cross your fingers, see a penny pick it up, do all that good luck stuff and hopefully we will be heading toward the door soon.

The view from Ellie's bed

Sorry about the last post, it was supposed to be video of Ellie riding a big wheel all around our floor. But try as we might we can't get it to load as anything other than a picture. Oh well, trust me it was good to see.

I was joking with one of the nurses that they should pay us to come in once a week and have Ellie ride her bike down the hall or race the big wheels around, just to show all the new parents how normal (sorry Gib, Typical) she is.

So now we start the wait. The discharge wait. We are very used to the fact that when they tell you that you will be discharged today, even though it doesn't seem like there is that much to do, it will take all day. If we are out by 2pm we will be doing really well.

This is Ellie's bed here at the hospital. She is very into the Fancy Nancy books and wanted her room here to be "fancy." She got a lot of help with balloons from her Aunt Beth, and her boyfriends Max and Christian. We also got to see some friends while we were here, Chase is here getting rid of a line infection and so we were lucky enough to be able to spend some time with him and his folks.

Well we're off for a few laps around the floor while Ellie and I wait for Gib to get here and for everything to fall in to place for us to get OUT A HERE!

Ya Hoo!

2009-06-04T12:35:00.000-04:00

She's back.

Nuf said.

Start feeds today and are loooking for the door late Friday.

Poop!

2009-06-02T18:36:00.004-04:00

This afternoon we went on a wild tour of the hospital with Ellie in a go-cart.

For the first part of the ride she was content to just sit and enjoy the ride until she saw the playground that lies in the inner courtyard of the building complex. Then despite her wobbly legs and sore belly, she made it very clear that she wanted to get out and play. Not just look, play.

So what are two parents to do when their post op-girl tells them that she wants to play? We got her out and guided her drunken-legged self through the climber and out the other end.

The girl is coming back.

Then to add to the good news, we made a pit stop in the Patient Entertainment Center for a round of Pac Man and an impromptu dosco session. Really. Not that we need much of an excuse but there we were dancing to Abba at 4PM on a Tuesday.

But the crown jewel of Abby and my afternoon was the trip around the 10th floor and Ellie's stop to tell us that she was pooping.

Yahoo! Just what we were waiting for. An enormous, off-color post-op poop.

Out came the NG tube and we are now down to three tubes: a central line, a g-tube and one lonely IV line in her hand for drugs that are incompatible with TPN.

To celebrate we walked some laps of the floor and met Ellie's uncle Fred, the highlight of her day.

Fred is at the top of her list of favorite people and seeing him was just perfect.

Tonight we are going to switch roles and I am in with Ellie while Abby gets some much-needed home time.

Ellie said goodbye tonight: "Goodbye Doctor Mommy!"

Gus is going to lose his mind when he sees his alpha female return. He has had a long week.

Almost as long as Abby's.

THE TALK

2009-06-02T10:06:00.002-04:00

Gib and I knew that it was coming sooner or later, honestly we were both hoping for later.

I was trying to get Ellie to go to sleep last night and she started crying and said. "Mommy, I want to go home now, I miss my dog Gus, my bed and my house. Why are we still here?"

As you can imagine that was the beginning of a long talk that I had been dreading. I tried to explain that she just had a big surgery on her belly and her stomach was still sleeping. That we needed to stay here to wait for it to wake up. Also that the doctors and nurses here were able to help her more than we could with just mommy and daddy at home.

But then I got, "But why do we always come to the doctor? We are here A LOT."

Ugh.

We talked more about it and how we were working with the doctor to make her stronger and healthier. And how she was special and that this might take a while. I congratulated her on being such a strong and brave little girl and that she was doing a great job.

Then I got, "No I not brave, I'm scared."

Ugh.

I did the best I could with no prep. We talked for a long time, it was not easy or fun. Got her calmed down, told her my version of sleeping beauty and finally got her to sleep.

I laid there for a long time after she fell asleep just thinking and in awe that my 3 year old just had that conversation. I felt like I was talking to the 12 year old Ellie not the 3 year old. I also realized that Gib and I both need to get ready for more of this. That probably means talking to some one who specializes in this kind of thing. Luckily I think we are in the right place and will be able to talk to some one today.

It was hard seeing happy go lucky Ellie be so not happy go lucky.

Other than Ellie shaking her mother to her core, the night was uneventful and we both got a good night sleep.

She was up and ready to party at 5:50 this morning and has been playing ever since. We are still waiting for signs that her bowels are awake = clear fluids from NG and G tube, and better yet, farting or pooping.

They should warn you when your child gets diagnosed with short bowel syndrome, that your life will revolve around poop. Poop! Poop! Yea Poop! For now we wait and watch.

2009-06-01T16:28:00.005-04:00

The inventory of tubes and wires got a lot shorter yesterday evening. Ellie was quite active during the day yesterday and wanted to squirm in her bed a lot. Over the course of the day this dislodged the epidural in her spine, which had to be removed at bedtime last night along with her foley catheter.

That leaves:

1 NG Tube to suction
1 G tube draining to gravity
3 EKG leads (to monitor her heart and breathing while she rides the morphine wave)
1 central line that branches to three spearate pumps
1 peripheral IV line in her right hand.
1 Pulse/Oxygen meter

We are down to 8 lines/wires and a new pain management strategy. We even got her out for a stroll this afternoon in a 'go cart' the modified whellchair that lets us bring pumps and drain bottles with us:

Ellie slept well last night on morphine doses every few hours along with a steady stream of Toradol, the new fangled pain med that helps wean away from heavy meds to more reasonable meds like motrin and tylenol. Every now and then she gets uncomfortbale but that lasts only as long as it takes to get the nurse to hit the Patient Controlled Adminsitration (PCA) button and give her some more drugs.

Ellie has been in a mommy phase for a few weeks. She has no interest in me and wants mommy whenever things aren't great (and even sometimes when they are). This has been good fun until this week when Abby can't leave the room. She will hit the 84 hour mark tonight at 7. Three and a half days without going home.

She is a rockstar. And it doesn't look good for tonight even though I have my stuff here for the overnight.

Super Mommy!!!

Sunday Update

2009-05-31T13:42:00.006-04:00

The view from our room

Ellie continues to improve in her post op recovery. She is more awake and alert today than yesterday which is good. She lost one peripheral IV late last night so she has a free hand which is both good and bad. Good that she can use the hand but bad that she can use it to pull on her NG tube. Abby told me that she and Ellie have an undertanding about the tube. So far she isn't pulling on it or complaining about it so we will see.

Her surgical dressing got changed this morning and the NP took out the drain tube which was remarkably similar to a red coffee stirrer. Ellie has her old North-South suture line and a new one where the ostomy used to be.

Things are good and the 12 tubes and lines are starting to be pared down. we are down to 8. We will not lose too many more until we get off the epidural. (Abby takes over writing now)

Ellie got to experience something new last night, bladder spasms. A mom who had the room next to ours for a long time on 8west, came to visit last night. She has a great blog and a very strong and tuff little girl. Their blog is called, From the Banks of Jordan. She had to leave last night when Ellie's first bladder spasm hit. It happened because Ellie's bladder was not able to empty enough because the Foley catheter wasn't draining correctly. It was not pretty and not fun.

We moved some stuff around and got a better set up for her Foley but it happened again in the middle of the night and again as soon as Gib got here this morning. But I think we have things under control now. She was also very itchy and restless last night, which didn't meant we didn't get much sleep. We had long talks about what all the numbers on the vitals monitor mean and which line coming off of her does what, what shapes you can find in the celing and long renditions of all the princess stories that I could remember.

Finally, this morning I think we got the true perfect mix of meds and the itch is gone. I know this becasue she looked at me at 9am and said, "mommy my face not itch any more!" She watched a few movies, played with a new flashlight from her grandma in Maine and now is taking a good nap.

It was good to see smiling Ellie today. Also Dr. Jennings stopped by during rounds and she still in managed to give him an IV handed high 5 and flirt. Go Ellie Go.

Thanks for all your support and words of encouragement, you don't know how much they help.

Sleepy, itchy and a new NG tube

2009-05-30T10:58:00.004-04:00

Ellie did very well last night and the epidural is working great. She did so well that Gib was able to go home late last night.

She did get a little restless around midnight and decided that she didn’t like having a tube up her nose.

So she pulled it out.

First she pulled off the protective hand sleeve that keeps her from grabbing things and then she grabbed hold and pulled the NG (naso gastric) tube out. All in about 20 seconds. So that bought her a new tube, and some valium. She did a great job dealing with the new tube being put in and it is working even better at draining her stomach contents then the first one did.

The Valium helped her relax and get some real sleep. After she pulled out the NG I got in bed with her. It was not the most restful sleep for me. Since I was there to protect the 2^nd NG, I woke up every time she moved. We did put large socks over the protective cuffs over her hands to make it harder for her to get the tube. But this doesn’t mean she doesn’t try every few minutes.

Luckily she only needs this tube for another day or two 'til her stomach wakes up and starts doing it's thing.

There is a narcotic in her epidural that makes her face itch. We knew this was going to happen as it has happened every time she gets an epidural. But the first round of meds was not strong enough and so around 1am we got a narcan drip. This is the same med they used on her after her second surgery to reverse the morphine, when she was just over a 1 month old. Back in the NICU, You don't know how Lucky you are. Just in a much smaller amount dripped in over a long period of time.

The combo of the two meds seems to have made her much more comfortable. She has been alternating between watching Kipper, sleeping and asking about the restaurant here at the hospital. She loves any and all restaurants and that includes the cafeteria here at the hospital.

Sadly she will probably not be able to eat for a few more days as we wait for her intestines to wake up.

All in all she looks good and keeps telling us that she has no pain, which makes Gib and I very happy.

Her goal for today is to sit up and breathe deeply. This will help clear all the crud out of her lungs and stop her from getting pneumonia.

My goal is to learn more about Jon and Kate plus 8 and how insane they really are.

Post-op report

2009-05-29T17:54:00.001-04:00

She’s out and among our friends on the 10th floor.

At 3:00 on the nose Dr. Jennings came to give us the post-op report. Exactly four hours from the update that they were beginning. Wow this guy is good.

Everything went quite well. Her ostomy is gone, he was able to ‘save’ almost all of the small bowel that made her ostomy and has reconnected it to her colon. To minimize the invasion of the surgery, he didn’t measure anything but once again told us that she has ‘a fair amount of bowel with good motility.

The connection (anastomosis for you short bowel geeks) is good and he laid all of her bowel in nice, gentle loops in her abdomen to reduce the chances of kinks forming.

Her liver continues to look pink and a tiny bit firm. He also noted that the biopsy needle had a bit of resistance which may be an indication that fibrosis is still there. That isn’t ideal but it is very close to the report from her last biopsy which indicated that no further damage happened as a result of her time on Omegaven. We will wait for the formal report from pathology to see what the final verdict is because the proof in the tissue. We’re sure Dr. Puder will give us a full analysis of what the means as soon as we get the report.

She has a drain in her old ostomy site to let fluid out and reduce infection but other than that, we are ostomy-free.

She is very sleepy by design to let her sleep off the first night but she wakes up every now and then and asks for something familar so she is doing well.

The new game of Short Gut hokey pokey begins now. We don’t know the rules but will learn them as we go.

She's in

2009-05-29T10:39:00.004-04:00

Ellie woke up this morning and told us very clearly that 'I am very excited to go to the hospital today!'

After a the normal amount of waiting room time when she told every doctor nurse and staff person that she was losing her ostomy today, at 9:30 this morning Abby finally carried her into the OR and watched her ride the versed wave to sleep.

And away we go.

Dr. Jennings told us that it may be a 'normal long time', or a 'more than normal long time', depending on what he finds when he opens things up. If there is a lot of scar tissue or adhesions from the last surgeries, it may take a while to clean things up.

We'll leave it to him and our favorite anesthesiologist.

Yes we have a favorite anesthesiologist.

Ellie has had him three times now and we ask for him by name. He is great with us, with her and Dr. Jennings told us this morning that we are right and he likes having this guy on the team.

Waiting rooms suck and always will. Now it is nothing but waiting and we can't do a thing to help (as much as Abby would like to) so we have taken off and will avoid the waiting room until the phone rings.

If only I could find a bed for a nap.

Why does Point Break keep popping into my head?

2009-05-29T06:01:00.003-04:00

There is a fine 1991 movie called Point Break. In this movie a young FBI agent goes skydiving with a bunch of bank robbing surfers.

Just as they are about to jump, one unnamed surfer looks at said FBI agent and says, "You're about to jump out a perfectly good airplane Jonny, how do you feel about that?"

I woke up this morning with that thought in my head. We are on a perfectly good airplane right now. Ellie is happy, growing and wonderful. We have a great nurse and things are going well.

So why jump?

Well, I guess it is all about perspective and where we want to be. Ellie with an ostomy is wonderful, but she is also a kid with a central line which is a huge risk and a kid who needs lots of IV fluids each week to keep her happy. Jumping likely gets us a girl who can potentially hydrate herself and one step closer to removing the central line reducing that risk.

Besides, if you know our surgeon, you'd jump too.

So off we go to Children's in 5 minutes.

Geronimo!

Pre-Op Day

2009-05-28T20:39:00.002-04:00

Tomorrow is going to be a very long day. Today was training.

We had a 7AM pre-op appointment at Children’s. That meant getting Ellie up and out of the house by 6:15. Coffee for us and nada for Ellie who started her time of Clear fluids only for the day and at midnight she goes to NPO(nothing per mouth).

All went well with the pre-op folks and we were shocked to see that Ellie is now up a full kilogram (2.2 pounds) since she went on pre-op TPN. I guess if you have 900 calories of TPN, 750 calories of formula and three good meals each day that you can’t help but gain weight. Shoot, I would gain weight on that diet.

And gain she did. We can feel the chunk in her thighs, which makes us all feel better as she goes into the mess.

We got home around lunch after telling three sets of people (surgery, anesthesia, and the Nurse Practitioner who works with Dr. Jennings) very similar things and getting a tear-free blood draw.

We are very lucky that Dr. Jennings lets us do pre-op bowel at home prep instead of doing it in the hospital. Insterad of being cooped up in a hospital room with a very perky girl, we let ellie ride her bikefor a walk during her bowel prep and played at Ellie's favorite playground.

We are also lucky that Ellie’s prep is easy. No food or formula (just Pedialyte) after 7 AM today. Enemas until things are ‘clear’ tonight. Nothing in the g-tube after midnight.

This sounds easy. Until you try to give a very logical and opinionated three year old her fourth enema in an afternoon.

No fun at all.

The plan tomorrow is for an 8:45 surgery. That means we need to be at Children’s by 7:15 tomorrow morning. Dr. Jennings has Ellie scheduled for four hours of surgery which, depending on whether this time includes prep and finish time could be as long as six hours from the pre-op room to the PACU (Post-Anesthesia Recovery Unit) recovery.

The plan of at attack: Dr. Jennings will do a reconnection of her colon to her short bowel, clean up some scar tissue that will inevitably be clogging the works inside, and take a much-anticipated liver biopsy for the folks who are looking at the long-term effects of Omegaven.

So we hope to have a fairly comfortable girl back to us by late afternoon but understand that things rarely go as planned. If she is out of the PACU by dinner time we are doing well.

This is one of the rare times that Abby and I will both spend the night in the hospital since post-op nights are often action-packed and sleepless. Fortunately we have friends and family who are coming over to take care of Gus.

You would think that after eight surgeries in three years this would get easier. It does. Until we start thinking about what it all means and what tomorrow afternoon could hold for us.

Then it gets scary, even the ninth time around.

But on the upside, we probably are all done saying ‘How are your balls?’ to Ellie in crowded restaurants.

Gratuitous Photos

2009-05-26T06:57:00.001-04:00

No message, just some good pictures to remind us what she looks like a week from now when things are all hinky.

The pre-surgery TPN is doing its thing and Ellie has put on a little more than a pound since we added a lot of calories last week. This will give her a nice cushion for next week.

So we have that going for us.

Which is nice.

Prepping for next week

2009-05-20T23:18:00.005-04:00

This week we have been spending a lot of time getting Ellie and ourselves ready for next week's events. The reality of what is going to happen is still quite abstract to all of us since Ellie's ostomy has been with us since she came home in 2006 (yes, ostomy bags have been part of our family since November, 2006!). It has been a long time since Ellie has had surgery of any kind.

The loss of the ostomy really hit home yesterday afternoon. Somehow Abby and I got into a long conversation about our inventory of ostomy supplies. I counted six sets. Not a lot but I figured it would get us through.

"Six sets, eight days. We should be all set."

Abby looked at me and said, "Okay, but we need to let Children's know that we need to bring some home with us afterward."

I looked at her and waited. I figured that it would dawn on her.

After a long pause, I said, "Abby, we're not coming home with an ostomy."

"Oh wow. I just hadn't thought about that."

The other side of the reality of going in next week came on today as we had Ellie's regular clinic appointment with the Children's Short Bowel Team. The thought of being 'in' again with a post-op Ellie is tough to think about.

But we did 8 months so a week or two shouldn't be all that hard. Right?

The particulars from clinic:

Ellie weighed in at just what she did in February. ~14 kilos ( about 31 pounds) which puts her in the 50th percentile for 37 month old girls. Not a big gain but,
She grew about an inch and half since February. which put her skinny self in the 75th percentile. three quarters of 37 month old girls are shorter than Ellie. Yahoo!
We asked to go back on TPN for the period around her surgery to give her a bit of a pre-and post-op cushion for the time that she doesn't eat around surgery. She starts omegaven and TPN tomorrow for the coming week. No big deal but she will get 50% more calories than standard D10 and we also get the benefits of all of those omega threes for her surgery.
She is also starting her third course of cipro tomorrow for the pre-op period. Having bad gut bugs is especially bad when you are operating on the bowel itself.
Abby won the badass parent award for her line repair skills. 'You did what?,' said one doctor. 'Wow.'
And we got to meet a kid from Connecticut who had Ellie's original surgeon at Yale-New Haven, Dr. McKee. The kid was at YNH and was referred to Children's for omegaven by Dr. McKee and the mom knew all about Ellie. It is good to know that good doctors are aren't being vain and are doing the best thing for their kids and getting them omegaven. If only all doctors could do that.

We have a pre-op appointment next week for the administrative particulars but at this point next week we should be in the depths of an unpleasant night of home bowel prep (think roto-rooter and massive colonics) and then we are off to the big house.

I think we can. I think we can.....

'Very Happy'

2009-05-16T07:57:00.003-04:00

Those were the words from Dr. Jennings this week as he gave Abby the report from Ellie's upper GI. No major changes from the last study and her 'transit time'- the time for the dye to move through her gut- looked good

Ah, those were the words I wanted to here.

No reports of gross dilation, a second stomach (that's what it looked like in some of her early UGI studies), or a huge pocket of doom.

Phew. All systems go for surgery on the 29th.

Now we just have to deal with the fact that it is going to take a significant step backward to make progress with Ellie. Thinking of our bubbly little girl all laid up in the hospital is terrifying but we understand that this is what it takes to move her forward so off we go.

So we are spending the next two weeks getting Ellie and ourselves prepared for what we figure will be a week or 10 days in the Inn. We are lining up new things to entertain her and talking a lot about the hospital.

Ellie told us in vivid detail about 'the nice nurses who like me' and the 'nice woman in the hallway who cleans her room'- two things that are in her head that we didn't tell her about.

Memory like an elephant. Damned Omega-3's. Thank you to Max, Kai and their folks for the great book, it will be nice to have new things to read when she is in. Thank you.

The line repair is holding up nicely and we are past the 72 hour mark, phew!

Line Repair number 3

2009-05-12T22:11:00.009-04:00

Third time is the time charm right?

So yesterday during Ellie's CVL dressing change I noticed something dark in the thin part of the catheter. Then I gave it a squeeze and it was hard. Ellie has two repairs to her line, one close to the skin and one that lives outside her dressing. The only thing we could think is that it was the metal hose barb that slides into the old line during a repair. Some how the metal piece had jarred loose and was moving down her line (closer to moving into her) We had no idea that this could happen and when we called Dr. Jennings he said the same thing.

The main concern was not the metal piece working its way into Ellie since there was another repair down stream that would have stopped it. We were more concerned about

How strong was that old repair without the metal piece?
How long did we have before that hard metal piece caused a break in the line?

So we knew we needed a repair. Dr Jennings said he could do it this afternoon, but with the dry time the repair needs we would have had to push Ellie's night time infusion way back. We have a repair kit here at home and I have done it before, so why not do it again? OK, so the first time time I did it I had a world class transplant surgeon talking me though it. But, I could do it by my self, right? Right.

Oh, yeah and because a picture is worth a thousand words, how about video?

What you are watching:

Ellie's old line lying on sterile drape
Abby Cutting central line to repair
New end of line attached to old line by sliding metal hose barb into old line, it comes already attached to the new line.
Clear tube slide over line and filled with Silicone to hold the line together.
Oh yeah and all to the sounds of the movie Bugs Life that Ellie was watching.

We were right that it was the metal piece from the old repair and we are going to bring it in with us to our next clinic visit for show and tell. All in all it went well, Ellie is now asleep with D10 running at her normal rate of 125ml/hr. I only felt like barfing for a few hours after cutting her line, and I am feeling better and better the longer we go with no incident.

This is the old line post repair. It will soon be attached to one of Ellie's dolls. This is not how we thought we would be spending our Tuesday morning. I think we will all finally relax in 72 hours after the threat of infection has passed.

Upper GI

2009-05-07T21:26:00.010-04:00

Yesterday was a scheduled trip to Children's for us with Ellie. Before her surgery later this month Dr. Jennings would like to know what we are looking at and also have a baseline against which we can compare any post-op changes.

To do this it meant another contrast upper GI study with our friendly radiologists (who somehow remember her).

As a very aware three-year old, Ellie is getting more keyed in on what is going on than she has been in the past. She knows what the hospital is and what happens there, and who and what we see when we are there. For the most part she is positive and excited about going to the hospital. She tells us about the big soft bed, the buttons that makes the bed go up and down, and the table that comes across her bed. When I tell her stories at bedtime about her favorite fictional creatures, Fish and Octopus, and their trips to the hospital, the stories do very little to put her to sleep since she stops the story when we forget a tiny detail of what we see as we walk through the hospital (No, daddy, after the cod, we see the bubble wall, and then the elevator...)

As we ate dinner Tuesday night we started talking about Wednesday's trip to the hospital and going in for pictures of her belly. For the first time there was some anxiety. we didn't know what to do since most of the time she runs into the lobby and is happy to be there.

On the fly we started telling Ellie about what the upper GI was, that it wouldn't hurt and that it was just a very fancy camera to take pictures of her belly. Abby then suggested that she could bring a camera and take pictures of them as well.

Problem solved. Phew.

So we went in and had the normal UGI happy as can be: An initial belly film, load of barium chalk through the g-tube(another good use for a g-tube), more pictures and some manipulation: a lot of waiting, lots more pictures (even Arnold the Piglet got films taken) and we were out the door five hours later.

No tear, no arguments. One free ballon for super girl.

So no we wait to hear from Dr. Jennings about the results with a bit of dread since the radiologist did use the word 'dilated' when he was looking at her films:
We are crossing our fingers about this and hoping for the best with an undersatanding that the radiologist likely didn't have much experience looking at Ellie's unique plumbing and Abby had to draw a diagram for him to explain what was where, how it was connected and how it works.

On the upside, now that the UGI is done, we are on the cancellation list and can move her surgery up if there is an opening in the next few weeks. Fortunately things at This Old House are slowing down and we are down to one final carpenter so a stay at the Inn could really work if the opening happens.

We figure the sooner we get her in, the sooner the recovery starts and the sonner summer starts. We have plans to go to the Oley Foundation Conference in Florida in the end of June and are going to do everything we can to keep those plans.

Ellie needs to know other kids with tubes and there is a great community of families at Oley to get to know.

Hello Cipro, my old friend

2009-04-25T23:54:00.004-04:00

After a few days of still feeling lousy and Ellie's fever still cranking along at 101, we finally made a call to Children's yesterday to see if they wanted to see her, change plans or let things roll. After a long talk with Dr. Jennings we agreed that since all of her blood work and cultures looked good, that it might be a GI bug again that needs antibiotics to treat Short Bowel Bacterial Overgrowth, SBBO, or a carpet of bugs that are growing on the insides of her small bowel, a relatvely common thing for short gut kids especially for those without their ileo-cecal valve to keep the bugs in their respective places.

We know that Cipro worked in the past and thanks to our friendly compounding pharmacy we were able to start it in the very special EB (Ellie Brogan) formulation last night.

The results so far have been amazing. No more fever, decreased ostomy output and a much happier kid after one night and a seeminly normal kid by this afternnon. Amazing.

We are going to tiptoe back into feeding her but all signs so far are that she is very hungry and ready to pick up where she left off a few days ago. We'll weigh in tomorrow morning to see if she slid back on weight and by how much.

Hopefully we caught it without much loss this time.

Today's fun was decorate your own donut day at Dunkin' Donuts. Ellie decorated well but had no interest in the donuts themselves.For her it was all about the sprinkles which she tried to drink out of the little dish before we caught her and scaled things back.

Mmmm sprinkles.

Still churning away

2009-04-24T10:31:00.002-04:00

Ellie continues to show signs of some mysterious illness. Her fever continues to ride around 101, and her output into her ostomy has been increasing over the last few days to what is called dumping, a nasty little situation where more comes out than goes in which makes her continually in a hydration debt that we are struggling to keep up with trough her evening D10 infusion and her naptime top-off of D5. The thing that is the most alarming to us is that for the first time she is acting and looking like she is sick. Pale, sunken eyes and low energy are all things that are new to us.

After 72 hours of this we have made a call to Children's and it won't surprise me to be heading in sometime today. So we are watching lots of Blues Clues, changing a lot of ostomy bags and quietly getting our things together for a trip to Boston if we need to go sometime today.

Oh well. At least it isn't Barney...

So far so good.

2009-04-22T12:29:00.003-04:00

She's home. Dr. Jennings sent us home to wait for the first round of labs. And we just got the call that everything looks good so far. She also sneezed a few minutes ago and a bunch of boogers came out. I have never been so excited to see snot.

I'm not happy that she will now have to deal with a bad cold, but at least all signs are pointing away from it being a line infection (knock on wood now please.)

So now she is off to my sister's house to have lunch and take a nap so that Gib and I can do some serious demo to our house. :)

102.0 F

2009-04-22T10:03:00.002-04:00

Here we go again.

Ellie coughed a few times last night but other than that she has been fine. She got in bed with me this morning and I noticed that she felt like a small furnace. I checked her temp. and got 102.0. So Gib, Ellie and Karlene are on their way to Children's to see Dr. Jennings. They will get labs drawn and blood cultures started, then stick around for the white cell count and CRP.

We still have a ton of stuff going on at the house and about 7 workers here, so some one needed to stay. So here I am. We are hoping that is it just a cold and that she will be home by nap time today. But I did pack them an overnight bag just to be on the safe side.

So keep your fingers crossed for low CRP and normal white cell count. On the good side, Ellie is still her normal self. She danced her way to the car this morning and was very excited to go see Dr. Jennings.

News for the week

2009-04-20T20:39:00.014-04:00

Last weekend was very busy for us. On Saturday we had a houseful for a third birthday party:

Mmm, Short ut friendly cupcakes and frosting....

and Easter:Egg hunts are always fun.

Super Ellie to the Rescue. On Easter...

To cap it all off Ellie had her three-year check up with her pediatrician. Although would like her to be growing and adding weight faster than she is, her size places her squarely in the middle of the pack for her age, 75th percentile for height and 5oth percentile for weight- long and thin. This a good news for us but also really great news considering where we have come from and the prognosis that we got on day zero. We thought about sending a note to her very first surgeon at Yale-New Haven but decided against it since they weren't so keen on out transferring to Children's.

To think what things would be like it we had not transferred....

The other news for the week is that we have a tentative date for Ellie' s next surgery, May 29th. The plan is to reconnect her bowel at this time and redirect the almost all of her bowel flow to her colon which will help her hydrate herself and ultimate reduce her dependence on her central line. Since we are all for tip-toeing through the process the plan also includes installing a surgical vent in her bowel to release gas and other pressure that might build up in the absence of an ostomy. She will be left with a much smaller stoma in her bowel that is controlled with what was described to us as a tiny version of her g-tube button that allows access to her bowel but can be closed. My Google search leads me to believe that we are looking at what is called a 'Chait tube'. But I could be wrong. Ellie has an in-person appointment late this week and we will know all of the details then.

The other huge news from the last few weeks has been the incredible transformation of our little house into a not-so-little house. We are still living in This Old House, but we can see the light at the end of the tunnel. Amazingly, we have only had to spend 2 nights away during the whole thing.

Here is what we started with. Two bedrooms, two bathrooms a lovely yellow color from the 70's:

Here is a few days later. Four bedrooms, three bathrooms and an upstairs on its way to being gray with real windows:

Things are still dusty and loud but we are getting there under the expert eye of Abby the General Contractor who is keeping everything organized and in line. This is another career that she could take on after Curator, doctor, nurse, and general badass.

But you can understand why blog posts haven't happened in the last few weeks.

I have to say that we are much better off with Abby at the reins than me. I think we would be living in a tiny house for decades if I were in charge. Ellie thinks all of the construction is great fun especially the trucks that deliver everything.

Her mother's daughter.

Ellie's Birthday!!

2009-04-09T22:44:00.007-04:00

Showing off the new bike
And she's off! She just got on and took off.
We quickly realized we will need another bike for us to ride to keep up with her.Ellie and Arnold the Pig

Happy Birthday Ellie!!

2009-04-08T23:30:00.002-04:00

Ellie is 3 years old today!!!!

Her first birthday we stayed at home and didn't really talk to anyone about the event. Just us and a cake, that Ellie hated. We were told so many times that she might not make it to her first birthday, so when it happened I think we were afraid to make too big of a deal of it. Also, we were convinced that if we threw a party then she would be admitted and we would have to cancel.

Second birthday was a very small event just us and a cake, that she again hated. We went to my sisters for dinner the next night for a small celebration with family.

So this year rolls around and we decided to bite the bullet and throw her a party this Saturday. She is very excited and keeps talking about who will be there and that she wants cupcakes. I think she has talked more her cousin and family that are coming down, than she has about her actual birthday. Hopefully the weather will be nice, if not our house will be ready. Well... parts will be ready and other parts will be up for tours. We will see if she likes the cake we give her tomorrow or the cupcakes on Saturday.

Here are some fun Ellie tidbits for you:

When asked what she wanted for her birthday she said, "A baby sister."
She can sing along with The Wiggles and do all the same dance moves the wiggles do, while jumping on her trampoline. (She did not get this talent from her parents.)
She has been hiding anything roundish in size everywhere around our house and my sister's house saying that she is the Easter Bunny. Then she says she is Ellie and goes around and finds all the "eggs." Think she is excited for the hunt?
"Cool" is one of her new favorite words.
Lastly, she is getting a bike for her birthday, so stay tuned for pictures of Ellie on her new bike!

Happy Birthday Ellie!!!!