Well I guess I need to start by retracting the statement I made in my previous post about there not being any good short bowel care in the south. A few weeks ago we learned of a short bowel program at Children’s Hospital in Birmingham, AL. We called them up, liked what we heard and took Nora up last week. It is definitely a trip, between 6-7 hours each way (depending on how often Nora needs a break) but once we got there and met the team we realized that the effort to get Nora up there was well worth it.
A sleepy head Nora getting ready for the trip. (and no, we didn’t put her in there)
The Children’s Hospital at UAB has been treating short bowel patients for a long time but their short bowel program with weekly clinics is fairly new, it just started up last fall. Even though the program is new the team is made up of very knowledgeable and experienced pediatric GI doctors who are eager to stay on top of the latest short bowel research and treatments. They even have Omegaven! They still have to obtain individual FDA approval for each Omegaven patient but they are working to get FDA approval for the entire hospital so they can be a provider. Many hospitals from all around the south are sending very sick short bowel babies to Birmingham for their treatment and Omegaven.
Daddy and Nora in the lobby at Children’s
Our experience with the short bowel team in Birmingham was like night and day compared to Nora’s previous GI care at Shands. The word “team” being emphasized because they truly work as a team. Their team consists of a pediatric GI specialist, a pediatric GI surgeon, their head GI nurse (who handles the Omegaven) and a dietitian who specializes short bowel. At Nora’s appointment they all came in together to discuss Nora’s situation. Communication and responsiveness is key to good short bowel mangement and so far they have proved to have both. Before we even took Nora up there we received more feedback and were responded to far more quickly than we ever were at Shands. I guess to sum it up, they just “get” short bowel syndrome. They understand that each patient is different, they understand that just because Nora is doing great that she is still very fragile and in need of being treated as an individual. It was such a breath of fresh air to have open discussion with new ideas and to have new treatment options presented to us instead of us presenting ideas to the doctors. (not that we wont continue to do our own research, but it is a very comforting feeling to know we’re on the same page of wanting to progress and be pro-active with Nora)
The general plan we discussed for Nora was as follows:
- add more complex carbohydrates to diet
- add more fiber to diet
- decrease fat intake
- concentrate on a low oxalate diet
- add either pectin, Benefiber or Questran to diet to slow down food transition time in the gut to increase absorption and in turn thicken stools
- check plasma citrulline level with next set of labs – plasma citrulline is an amino acid produced in the liver and intestine, new research is finding that checking this level can be an indication of nutrient absorption through the intestine and is being used as a guide to predict successful weaning down of TPN
- to do an upper GI w/ small bowel follow through – this will show how much Nora’s intestine has grown since her initial surgery, show if there is any bowel dilation and show the transition time (how fast things move through the intestine). All of this information will help them help us manage Nora’s SBS better.
- do an ultrasound of Nora’s liver – they suggested this to be done because they have seen in some SBS children (not many, but some) who suffered pre-Omegaven liver damage to have permenant liver damage even though the bilirubin and liver enzymes returned to normal. They do not suspect this to be the case with Nora but just want to rule it out with a non-invasive test.
- adjust Nora’s TPN recipe according to her labs
Montana and I are on board with all of their suggestions and are very excited about them. Nora will be having the upper GI and ultrasound next week. They really wanted to do it in Birmingham but when we told them how traveling has messed up Nora’s system in the past they were very understanding on why we didn’t want to add one more stress to her system at that time and did not push us to do so.
Overall Nora did very well on the trip. It was the longest distance she has ever traveled. She only got really fussy during the last hour or two going up and back. Oh how thankful we are that our car has a DVD player! We made lots of stops along the way for her to get out and run around. On the way home we let her pick out a new toy at a truck stop to keep her entertained. They had girly toys galore but what did our little princess pick out….a snake! Montana and I thought it was too funny and was perfect for her tough little self.
The trip was very tiring and it did have it’s stressful moments….like getting extremely lost when we first got into town then switching hotels at 10 o’clock at night after realizing the one we had booked over the internet was not appropriate for Nora. Even after we found a more comforting place to lay our heads, me with my germaphobeness had a huge amount of anxiety about having Nora in a hotel room, even after bleaching and Lysoling every surface. But it all worked out fine in the end and the highlights definitely outweighed the negatives. Nora even had her first in-person meeting with another short bowel child at clinic! Little Emmanuel was just a little older than Nora and he just happened to be the first baby on Omegaven in Birmingham.
They want to see Nora again in about 8 weeks. They don’t have a set time schedule on how often they see each patient, they base it on the individual child’s condition. They are very willing to work with our local doctors and do a lot of communication via e-mail so we can keep them up to date on how Nora’s doing. They’ve been working with Dr. Crooms’ office on the details of the upper GI for next week which makes us feel oh-so much better about the procedure and having Dr. Croom’s involved is always a plus. It was originally scheduled for this week but Dr. Crooms wanted to have the preferred pediatric radiologist take care of Nora and he is out this week. Which radiologist may sound like a small detail when it comes to a common procedure for SBS children but to us it makes all the difference between dreading next Tuesday and knowing that she’ll be in the best hands possible.