September 12, 2005
September 12, 2005 | Updates
SUMMARY: Samuel was given a swallow study today to see if he protects his airway when he swallows. Basically, we learned that he wasn’t willing to swallow anything for us so we will have to try again in a few months. He also had physical therapy for an hour today during which he very loudly vocalized his unhappiness about being forced into positions he didn’t care to be in. We also decided that the splint for his right arm is creating too many “hot spots” and needs to be remade. He took another REAL bath and this one he liked much more. He was very calm for the first few minutes laying in the warm water. And he seemed to know he was somewhere different than in his little bed. They removed his catheter and it didn’t make any difference so we are back to cathing him every 4-6 hours. And I did a whole bunch more training so we can be ready when it’s time to go home. Last of all, they read his CT scan from yesterday and it doesn’t show any swelling or pressure in his brain, but it does show reduction in brain matter meaning that at least some of the suffering cells from his injury did, in fact, end up dying.DETAILS: Today was a ssslllooowww day because we’re excited to get home. I kept thinking it was Tuesday all day long. The swallow study was pretty neat because you could see Samuel’s head and throat on an x-ray as they put liquid into his mouth and watched what he did with it. Everytime, he pushed it back out of his mouth with his tongue. So he’s not quite ready to try swallowing things as of yet.
The catheter came out this morning and made no difference in his urinating. I’m kind of bummed about that because it’s going to be a lot of extra work to catheter him every 4 hours until this problem goes away.
The CT scan also wasn’t great news. It was good to hear that there is no pressure in his head, but it was sad to hear that some of his brain cells have died. We compared his brain the night of the accident, nine days after, and yesterday. The night of the accident, there was hardly any fluid in the ventricles of his brain because his brain was so swollen. Nine days later, there was fluid in the ventricles as there should be and there was some indication that there had been a reduction in brain matter because there was an increase in fluid. The CT yesterday showed some more reduction in brain matter, but not much more since the scan nine days after the accident. The majority of the loss still seems to be in the basil ganglia.
Samuel slept better last night from about 10:30 pm until 4:30 am and then 5:30 am until 8 am. He also took a nap today for about an hour and then another one this evening for about an hour. He fell asleep tonight around 8:30 pm and has slept now for nearly 2 1/2 hours just on his tranxene and clonadine. Hopefully, we are getting into a better pattern of sleep. I have mostly found that he needs to be kept awake and busy most of the day if I expect him to sleep at night. I guess some things never change.
Even though we are excited to come home, we have become attached to many of the people here at Primary Chidrens and it will be hard to leave. We already miss Dr. Colliver who ended his residency a few weeks ago. And today I hugged Dr. Such-Niebar good-bye. I consider it a huge blessing she was our doctor because we felt comfortable with her and the decisions she would make for Samuel. She has saved us much grief and agony just knowing that she would always do the best things for him. And then there are the nurses. It makes to sad to think of leaving them all. They have been wonderful and have each mentioned how much they will miss us - mostly Samuel. In the 2 months we have been here, I have seen at least 10 different nurses cry with us over the things we are going through. It says a lot about them. We have met a lot of parents here and will miss them. They have been a great support.
Keep praying! We still have a long road.
Love,
The Jewkes
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