The Textbook Patient

May 28, 2008 at 6:40 pm | Posted in Uncategorized | Leave a comment
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Warning! Graphic post. If you don’t want details, just read the summary.

Summary: Chayim Zvi is recovering exactly as expected and the neurosurgical team is very pleased with his progress. He’s uncomfortable but improving all the time. We still do not know if he will need rehabilitation or when he will be released from the hospital.

Please understand that brain surgery is a Very Serious Thing and the recovery is not easy. Because of where the tumor was located (left cerebellum – the center for balance and motion) he’s got something like vertigo and nausea. His neck muscles are very sore because they went in through the back of his head and there are a lot of muscles in the way there. The incision itself does not hurt.

As we wrote, after the surgery he was moved to the Pediatric ICU. The PICU at Dana has 6 beds in the room we were in, and there’s another PICU ward too. One nurse per two patients. Chayim Zvi was hooked up to all sorts of monitors and drips, and of course there were plenty of machines that go Ping!. He got to PICU in the early evening, I think around 6 pm. I left at about 8 to head home and Gidon stayed in the PICU. There is a “family room” just outside the ward with bunk beds, a shower, and a kitchenette, but Gidon spent the night in the big chair in the ward. Chayim Zvi threw up about once an hour, so as Gidon put it, he slept half the night. Half hour up, half hour sleeping.

I arrived on Tuesday morning at about 11:30. They were just getting ready to move him to the intermediate care ward. Of course, as in most hospitals, this was delayed until the orderly finally arrived. Gidon went to the family room to sleep, and I stayed with Chayim Zvi. We finally went up to the ward. We are in room zero (because actually the room has no number) and we have the bed by the door. I decided that I like that better, even though it’s less private. It’s more spacious, with cabinets for our stuff, and it’s easier to catch the nurses as they walk by.

So Gidon slept for a few hours. Chayim Zvi was already vomiting less frequently, but he was in a lot of pain and was also afraid to move because every movement caused him to either vomit or want to vomit. He was also in a diaper and because he didn’t want to move it was very difficult to put it on properly. So he kept leaking, which resulted in needing to change all the sheets. Complex. Finally we hit on a solution. We put a disposable absorbent pad under him and we also managed to lift up his hips a bit to put on the diaper better. (He absolutely would not lay on his back.) In the meantime he also had the IV saline drip because he was not eating or drinking at all. He was laying on his left side and the cot is to his right. So I spent most of the night in the chair to his left so I could stroke his head, hold his hand, and help him sleep.  He actually had a pretty good night, only vomiting once. But he could only sleep for 20-30 minutes at a time.

When he came out of surgery he was wearing a neck brace. The brace prevents him from moving too much and supports his neck, which keeps him more comfortable and less nauseated. Problem is, he didn’t like the brace because it was pushing on his neck. It was already off by the time I got back on Tuesday. Today the nurses told me that the brace would really help him to feel better more quickly and finally I convinced him to wear it. He’s actually very cooperative, even when he’s saying “Don’t want”. We also got him to, well, not exactly sit up but to move to the raised part of the bed so he isn’t laying flat. He was very attached to the “kidney” – the basin for vomit – and at one point was sleeping with his nose in it. I managed to dislodge it and take it away and he sort of sleepily raised himself up on both arms and turned his head to his left. And he didn’t vomit! Yay! That was a big deal. He also drank some water without being sick. I hope by tomorrow he’ll be eating and we can get rid of the IV.

The surgeons would like us to distract him from his head – read to him, play games, anything to take his mind off the pain and discomfort. Chayim Zvi insists that he is Not In The Mood but he responded well when I read to him. Today the physical therapist came by but Chayim Zvi was not interested. Tomorrow we’ll be more insistent. The ward psychologist also came and spoke with him. Nice guy.

I left at about 2:20. Gidon tells me that since then Chayim Zvi has actually been in the wheelchair a couple of times. So we might see more dramatic improvement tomorrow. They might give us a “vacation” on Friday, but it’s highly probably that we will be spending Shabbat in the hospital.

The other kids seem to be managing. Moriyah is a little wild, but the other kids are doing great. We could not cope without the help of our neighbors, the Dresslers. And the whole community has been amazing. Someone on the bus today told me that every child in the community knows the name “Chayim Zvi ben Henye Devorah”. People all of the world are praying for him. Thank you!

Devra

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