Lots of tears today from a weary and anxious boy who is tired of seeing herds of doctors around him and syringes and needles and blood. He's getting used to the tube coming out of his neck that goes to a bulb at its end and is full of blood. He sometimes tilts back his head and asks if there is any blood; he's still afraid of bleeding -- I think he's always known that's a danger. (Dr Waner told us at the office visit last Tuesday that the life-expectancy for this type of case left untreated would probably be 20 years old because of serious bleeding). They took out the arterial line and catheter this morning, so there are just the 2 regular IV's, and they use those to draw blood from for his lab tests. He is so afraid something else is going to hurt him, like an IV restart or needle stick, though we're pretty sure that's all in the past. Had some good pain med early this morning, but just plain old Tylenol since, and he says his neck and face do not hurt. He had a little oatmeal for breakfast, then a good serving of chicken and mashed potatoes from Boston Market across the street for supper. Otherwise just drank a lot of strawberry-kiwi juice from the corner market. I got out to the holiday inn after lunch time for a quick shower and to make sure they had extended my reservation til Monday. Then I picked up our "groceries", and got back up to his room. There is a very nice Child Life Specialist who sits with him and plays or watches a movie while I'm gone that hour each day. I'm sleeping here in the hospital, surprisingly well!
We walked a lot around the floor, around and around the circle. Sometimes Jose almost looked like he was sleep-walking. He denies any pain, just says he's tired. But we walked enough to get the extra fluids moving out of him and he started to pee a lot more and his hematacrit went from 19 last night (low) to 21.6 this evening. So no second bag of blood. No more lovenox - last dose of that was this morning at 10:00.
His anesthesiologist from the first procedure with Dr. Berenstein, Dr. Patti Brous, came up to see him and brought him a brand new Red Power Ranger outfit. Another special visit was Wed evening from an older Guatemalan lady and her husband. The woman had read about Jose in El Diario, a NYC paper, and she wanted to meet him. She came in carrying a copy of the paper with Jose's picture. She gave him a card and check for $20 for a new toy. I think her timing was very special: as she left she said a prayer over Jose and make the sign of the cross over him, giving him a little blessing. Jose has told me in the past that his mama prays for him sometimes and makes that sign, so it will be so nice for his mom to know that somebody was there to take her place at that the very night before his big surgery when she couldn't be there.
The right side of Jose's little face....it is a little face now. It seems so sweet and so little sitting on top of his still swollen neck. It's a little sunken, even, on the jaw there. They took out all the muscle and fat - and part of the nerve there - to make sure they didn't leave behind anything that might regrow. Big red line of stitches and steristrips going diagonal from corner of lips, halfway down neck, then all the way across neck from left to right. His lips are just a little pooched up on right, but I think they will come down. Dr Waner wants to fix the sunken part by adding some tissue there next time when he's back in to get the rest of the malformation removed. You kind of wonder, Where is Jose? Who is this? He hasn't looked in the mirror himself, and I don't think he wants to, but I imagine there will be some image adjustment for him to deal with as well because it's a big change. But he's proven to be quick and capable and very successful at making adjustments in life. And this is a wonderful one to have to make. What amazing skill in the hands of these doctors. What a life-saving and life-changing blessing for this little boy.
No comments:
Post a Comment