We have been home for almost two weeks. Things are starting to settle down a little bit and we are settling into an almost normal routine.
Sam has continued to do about the same since we left the hospital. His weight has gone up a little and we were approaching the 8 pound mark on Monday at 7 pounds 13 ounces.
Jason has returned to work on an (almost) full time basis and Deb will be returning to work next week for a few hours. With Sam's condition it is no longer feasible for both of us to work full time, but hopefully the few hours a week that Deb will be able to work outside of our home will give her a little break from the kids and help keep her sanity.
We have been gathering information since the day before we left the hospital in Milwaukee regarding a "investigational" treatment (which is supposed to sound better than "experimental") to reduce the impact of TPN on the liver. Typically TPN contains a plant based fat which is what is believed to cause the liver problems experienced by patients who are on TPN for long periods of time. This treatment replaces the Intralipids with a fish oil based fat called Omegaven. We have been unsuccessful, thus far, in getting support from the physicians here to get FDA approval and create protocols to have Omegaven brought to Wisconsin for our use with Sam. We were feeling pretty disappointed regarding this and are still trying to push this issue. I was contacted today by Dr. Mark Puder from Boston Children's Hospital and spoke to him regarding this treatment. He reassured me that if we can not get anyone to set Sam up with Omegaven here, that he would be willing to help us get Sam seen in Boston to start this treatment.
In an odd coincidence, we were also fortunate this week to be contacted by another family that has already gone through most of what we are experiencing - including traveling to Boston to receive Omegaven. They live in Michigan and have a little boy who is just over 1 year old and was diagnosed with the same disease as Sam shortly after birth. They went through a lot of the same experiences that we did with the testing and retesting and waiting and we hope to be able to stay in touch with them. They sound like they are doing well and it gives us a little more hope.
Although we do not look forward to Sam having to be in Boston for any period of time or the follow up visits that would be necessary, it sounds like this may be his best chance for living a long, healthy life. It was very hard when one of us was in Milwaukee and I can not imagine how hard it will be on all of us to have part of our family relocated to the East Coast for several weeks or months.