We often forget that there are people from all over the country who keep up with Sam's progress; the first part of this entry is for you. We received an email today from someone asking how we were coping with all of the wicked weather we have had and if we had been affected at all by the flooding here.
We have been pretty lucky here. It has been a rough week with Ryan cooped up in the house a lot, and we did get a lot of rain, and everything is mud. We did not get quite as much rain as areas about 20 miles to our South. In Oshkosh at one point over 75% of the roads in the city were under water. My home town of Fond du Lac, about 45 miles south of us, was hit pretty hard by the floods and there are a lot of areas that were affected by flooding. The pictures of the parking lot where my old high school used to be were just incredible. Both of my parents had to deal with flooding at their workplaces and things were pretty messy for them. My mother’s car fell victim to the flood waters and is still sitting in the parking lot where she works, waiting to be towed, like many other vehicles around the city.
On the Sam front, we are doing about the same. We have a routine down for what Sam needs and when. Today we made a trip to grandma’s house and were actually gone from home for over 8 hours. We were a little nervous about traveling that far with Sam for that length of time, but everything went well. It was a little bit of work to make sure that we had everything that we needed for the entire day, but we managed to get through it without any yelling.
We had mentioned the possibility of traveling to Boston in our last post. On that front we have made some decisions and are beginning to make some plans.
Sam's direct bilirubin level hit 2.9 early last week. While there are many TPN dependent children out there with higher levels than that, this still is not good. This is an early indication that Sam will most likely not be one of those miracle people whose liver will tolerate the lipids contained in his TPN without any issue. Sam is very slowly becoming more and more jaundiced, but the changes are subtle and he doesn't look too bad. We have seen a few pictures of babies who were almost orange. They can reduce the intralipids in his TPN, but then of course his growth will slow down and reducing this too low could actually cause him to be malnourished. Without some way to compensate for this there would be very little hope for Sam.
Omegaven is derived from fish oil and is widely used in Europe in TPN as a replacement for intralipids. It is not yet approved for clinical use in the United States. We are still working on trying to get our doctor here to get approval from the FDA to use Omegaven as then we may be able to at least have our follow up visits occur in Wisconsin sometime in the near future. Sam cannot wait that long for Omegaven, so we need to go right to the source and to the expert regarding this. This will mean that Sam will need to go to Children’s Hospital in Boston for an extended length of time. Starting the Omegaven will mean an initial 48 hour stay at the hospital for him, and then he will need to stay locally until his direct bilirubin falls below 2 and the rest of his lab work looks good. This will most likely mean a stay of 1 to 2 months in the Boston area. Unfortunately it also means returning to Boston every 2 months for follow up visits until we can get someone locally to handle Omegaven.
We are still in the planning stages for this next step and are working on trying to get assistance for the travel expenses that we will need to incur to make this happen. Deb and Sam will be heading to Boston for the duration of his visit, while Jason and Ryan wait at home again for Sam to come home. The good news is that with this complication out of the way, Sam's future looks a little more promising and a tiny bit less complicated if we can remove the risk of liver problems with this treatment.
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