Henry's Blog

Sunday, January 21, 2007

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.

2 Comments:

Anonymous Sharon Maifeld said...

Dear Henry,
My plan starts February 5th. Maybe we can do our countdown together! Thinking about you.
Love, Sharon

4:13 PM  
Blogger Aunt Carroll said...

Dear Cermaks,

It is Wednesday night and I trust you are all back home. I hope you can have an easy and somewhat relaxing time at home while you are there. I can only imagine how overwhelming all of this is - it is almost to hard to take in. Going back to Memphis, Terry in Hilton Head being back in the hospital and so on. I wish I could do something to lighten your load and make this easier for you, I truly do. If you think of ANYTHING, and I mean ANYTHING, I will be right here and at your service!

I have told Henry several times in past emails that in the not to distant future, this will be just a memory that you all survived beautifully. I realize that it isn't much comfort right now, however.

I sure hope Superman gets to feeling a whole lot better soon. I hate to think of his post op condition. Any time that I have had surgery, I have felt nauseated, experienced terrible pain, itchiness and felt weak and tired. It's no picnic but it will pass and it won't be long. For what it is worth, at least the absolute worst is over. Getting through the surgery and following MRI would put most people in the "nut house". You all did great, stood together like champions, supported one another and all three pitched in to get Henry where is today. Talk about loving each other through terribly difficult times. I sure hope Dr. Cermak is feeling a little bit better - boy, is this going to help him be a good doctor or what? I think of all that he has been through and all that he has learned and I think he may very well have found his calling. What a marvelous physician and surgeon he would be, particularly, if he worked with kids. Imagine what strength they could gain after hearing what he had been through when he was 10. That will make us all so very proud but not surprised, he would offer so much to medicine. Superman, I have all of the faith and confidence in you. Feel better very very soon and know that a whole lot of people love you and marvel at your fortitude. Our amazing Henry.

Love and hugs,
Aunt Carroll

9:55 PM  

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