After more than two weeks in PICU, Sam is stable enough that he no longer needs a dedicated nurse (whose desk is two feet from his room) and round-the-clock observation. So we have moved to "the floor," hospital-speak for anything that's not an intensive care unit. In our case, this means the Hematology and Oncology unit (4th floor).
Leaving PICU is genuinely a good thing, but we are careful not to get over-confident. We were moved to the 4th floor once before, about three days after we were first admitted. We made it all of one night before the doctors saw something on Sam's chest x-ray that they didn't like. Back to PICU we went, followed by more than a week with Sam on a vent (among other things).
We are very happy to have Sam in such a good place again. He looks and sounds better than he has since this all started on June 9. But as we have been reminded, HLH makes for a long journey. There is still lots of time for things to go awry, and it's possible, if not likely, that we'll have to go back to PICU for one reason or another.
In the meantime, we are expecting to talk to the bone marrow transplant team sometime this week. It'll be good to learn more about how that process is supposed to play out. And it feels good to be able to think--even in the abstract--about what a light at the end of our tunnel might look like.
What great news. Your family is in my thoughts always.
ReplyDeleteHappy to hear some good news for little Sam - we have you all in our prayers and thoughts. Love, Sandy and Dick
ReplyDeleteDear Michael and Alyson,
ReplyDeleteGinnie Record here (Bill MacDonald's spouse). I know that Bill reached out to you by email early on, but I just wanted you to know that you are all in our thoughts and prayers these days. From your most recent posts, it would appear that someone is listening. Many, many years ago, my son was hospitalized with spinal meningitis, and while his condition was only a spit in the ocean by comparison to what Sam is going through, the unknowns were extremely disconcerting, so I have a sense of what the two of you have been facing. Many years later, I had the honor to serve as Senior VP of Development at a Level I trauma center in central New Jersey. During my time there, we raised the funds necessary to build a first-rate Children's Hospital which bears the Bristol-Myers Squibb name. The pre-existing NICUs and PICUs were totally upgraded -- staff, programs, and equipment. I have always been astounded and humbled by the dedicated men and women who care for our tiniest and most vulnerable patients. I know that the staff at Children's Medical Center is first-rate. You are in very good hands, indeed.
Please let me or Bill know if there is anything we can do for you. We are here for you.
Fondly, Ginnie and Bill