Wednesday, August 6, 2008

Sam comes home (sort of)

Sam was discharged from the hospital today after officially becoming the 94th baby to receive Omegaven from Children's Hospital Boston, and we are now back at our temporary home at the Holiday Inn.

Sam has now had two full doses of Omegaven. As hard as it will be to believe for many people, we can already see a difference in Sam. His horrible vomiting fits that started a few weeks ago have stopped completely. No puking in two whole days. He also seems to be more comfortable and is sleeping more peacefully than we have seen in quite awhile. We now just wait patiently for the day that his direct bilirubin falls below 2 and we can go home for awhile. We have also been warned to prepare for a large increase in Sam's energy levels over the next few days, this will be a huge change as Sam sleeps a lot right now and has never really had very much energy.

We will never be able to say Thank You enough to Drs. Mark Puder and Kathleen Gura for the work they have done to make Omegaven available to the patients that need it. They, along with the entire staff at Children's Hospital Boston, are some of the most compassionate, and passionate, people in the medical profession that we have met and the level of care that they have provided has been superb. We have been very fortunate to receive excellent care for Sam in Wisconsin from his Pediatrician and at Children's Hospital of Wisconsin, both in the Fox Valley and in Milwaukee, but Boston has brought a wealth of experience regarding 100% TPN dependency (and Omegaven) that I do not believe we could have gotten anywhere else.

We also need to thank everyone that has provided financial support to allow us to seek out this treatment when our insurance would not cover it. We never could have done this for Sam without your help.

When we first heard of Omegaven from our doctors in Milwaukee, we could not fathom having to be in Boston for an extended period of time or having Sam on an "experimental" treatment. We were fortunate enough to be contacted by the parents of two children who were on Omegaven and once we read their blogs we were done researching and moved on to preparation. Thank you to Kinn & Jose (Bo's parents) and Abby & Gib (Eleanor's parents) who made their stories public and available for others to read. Hopefully some parent who's child is suffering from TPN induced liver disease will stumble upon our site, or we will stumble upon them, and we can share this lifesaving information with them as well. There are others out there, of course, but these are the two that we happened upon and ultimately made our decision to come to Boston for us. All of them work very hard to spread the word and we hope to be a small part of that in the future.

We could probably go on for a long time thanking all of the people that have helped us through the last five months, but the list is just too long. We have definitely gained a new respect for the human race as a whole after experiencing firsthand the way people pull together and help one another in a time of need.

We will continue to post any new developments with Sam. It may take us awhile to get new pictures posted but the wait will be worth it when you see a brand new Sam.

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