His Own Doctor Inside

Today was a pretty good day after a very hard night. We got very little rest as Henry struggled to get comfortable, suffering a rotating palette of aches, pains, itchiness and anxiety. He awoke several times very upset and believing he was in a different bed (he kept saying he wanted to be in the other bed that was "lower," but when we lowered the bed he said that was not what he meant, and pointed to another part of the room and said the bed was over there (Is it lower over there? Does he mean downstage?). Eventually, at about 4AM a little pain medication helped him sleep - just in time for a blood test (at 5AM?).

One of the night nurses suggested that Henry has Posterior Fossa Syndrome - a condition of some children who have had surgery for tumors in that area (basically the rear side of the brain above the brain stem). This syndrome involves a variety of symptoms including mutism or speech disturbances, difficulty sallowing, decreased motor movement, and emotional instability. These symptoms can be very severe and can take weeks or months to subside, sometimes with extensive therapy.

We saw both surgeons - separately - on their morning rounds. Both continued to express how well Henry is doing. They dismissed the Posterior Fossa Syndrome, saying that the vast majority of those patients don't speak at all, and the syndrome gets blamed for a lot of common symptoms.

Henry has been eating better. He officially has been put onto a full liquids diet - full liquids meaning basically thick fluids (but no thin liquids, which can flow into the windpipe easier). Thick liquids include yogurt, ice cream, soup, oatmeal and cream of wheat but, oddly enough, not grits (which of course is the only thing he wanted). We've been going outside the directive a little; if he asks for anything we let him try a tiny morsel. If he can swallow it without much effort, he can have it.

We've been getting him out of the room as much as possible - mostly by wheelchair. He still cannot stand for long or walk on his own, but he's making subtle progress. At this point, knowing Henry and how he has rebounded from all his previous procedures, we have faith in his resilience and power of recovery.

Albert Schweitzer said that every patient has her or his own doctor inside. Henry has a great one.

Tomorrow morning (Monday), we are supposed to go to St. Jude to be entered into the Radiation program. We don't even know for sure if we're being released from LeBonheur, or transferred to St. Jude or what. Dr. M, the radiologist at St. Jude said we could postpone the treatments for a week while we go home to regroup, and Dr. S said this morning that he felt we could put Henry on a plane Tuesday, so right now that remains the plan. When we're registered at St. Jude, we will check into a hotel near the airport, Dad will return the rental car, and early Tuesday morning we will shuttle to the airport for a 7:30 AM flight. St. Jude will arrange our flight back to Memphis, probably around the 30th. Dad will stay a couple of days and then return home to go back to work and keep the home fires burning.

That's our plan. And we're sticking to it.

Until we get unstuck.