Wednesday, September 17, 2008

Good News From Boston

We received a surprise on Monday when Dr. Puder added on a bilirubin panel to Sam's labs Monday. We normally don't see Sam's bilirubin until Wednesday.

On Monday Sam's direct bilirubin had dropped to 3.2. That was a drop of an entire point in just five days and a good sign that going home at the end of this week may be possible.

On Tuesday I traveled to Boston to help prepare for the trip home to Wisconsin. I had not seen Sam in three weeks. The change in Sam has been nothing short of remarkable. His color is good, he is full of energy, spends time laughing and smiling, and overall is obviously feeling much better.

Today we had an appointment with Dr. Puder and more good news. Sam is now 23 1/2 inches long, and weighs 11 pounds 1 ounce. To add even more good news, Sam's direct bilirubin dropped another 1/2 point to 2.7 in the last two days. To top that we were given the OK to take Sam home this Sunday. We just need to make it through the next 3 days with no new issues or major changes and we can all go home together.

Now we have begun working through the logistics of taking Sam home again, which is much like the first time we took him home. Arranging to have or pediatrician act as our point person and advocate for Sam in Appleton, making sure that our local hospital is prepared to care for Sam if needed, making sure our local hospital is prepared in some way to deal with Omegaven if needed, making sure that the home care is all set to go again and we will get a delivery of supplies, making some decisions regarding other issues that have come up with Sam's care in Wisconsin, etc...

Today we also had a chance meeting with Bo and his Dad, Jose. Bo is the little boy from Michigan who also has MID. It was nice to meet them and we can't wait to spend a little time with the whole family tomorrow.

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