We were walking around the hospital and we saw this lady carrying this tiger. We saw her twice. JD was commenting on it. Later she came to his room and gave it to JD. Lagoon donated it and they gave it to him! I am not sure how they knew where his room was. But he was very excited. He named him, Big Tiger.
One of the tests they did was taking fluid out of his neck with needles. They were unable to get very much out. We still don't know if it is spinal fluid (CSF), brain tissue or just body fluid. The tape on his nose and forehead is holding a string that goes into his nose. They put a cotton thing clear up there. They did another spinal tap and put a radioactive dye into his spinal fluid. Then he got scanned with a machine that takes pictures of all the radioactive stuff in his spine and then covering his brain. They have scanned it twice and will do it again tonight. He has to sit there for 30 minutes very still. He does really well. I would be claustrophobic. They have the machine inches from his face and he can't move for 12 minutes and then it is moved to the sides of his head. Last night he fell asleep. He was counting by twos to 100. I was glad he fell asleep. But then they pulled the string out of his nose, had to rip the tape off his face and that hurt him. He was really mad. We had to tie him down to the bed. He was trying to kick me. He was yelling and screaming. He felt bad after. When he gets mad like that, he is a totally different boy. His Eustachian tube will be "stuffed" on tues or wed. Not sure what the Neurosurgeon will say. I feel we are back at square one without any answers. They tried to take CSF out of his shunt last Monday and they were not able to get any. They think he has a collapsed ventricle. I don't know if that means he needs a new shunt or if the ventricle will get better? Still wondering how the brain tissue or CSF got down in his neck since they didn't see it after surgery? Is it OK to stay there? So many questions still unanswered. We just don't want to go home and come back in two weeks again. It is so hard to have the "mystery" boy. Nobody knows what is going on. He has kidney stones and gall stones. They have not caused him pain. We hope they will stay where they are so he doesn't have to pass them. They changed his antibiotics since that is what was causing the stones.
JD has been having fun. He feels good and plays with his bouncy ball every day. He talks with the nurses and even played with a little girl yesterday. They were yelling, screaming and running up and down the halls. It was so great to see. It fills my heart with joy to see his smile and hear his laughter. He had so much fun he even said he wants to stay here. Now he says he doesn't want to! :)
I am sure we won't know anything new until Monday. The docs are gone for the weekend. Thanks for the love and support of everyone. We are so very blessed. We couldn't do it without our family, friends and especially our faith!
2 comments:
I'm sure you are frustrated that you aren't getting any answers. How could you not be? I'm glad that at least he is happy, that makes me feel good. I hope that they will figure out something soon so you can come home and get back to normal life!!
I came across your blog from Schmitt's blog. I could not figure out why I knew your name. I have racked my brain all morning and remembered that I was a part of your babysitting co-op. I had to get out last year when my little boy was diagnosed with leukemia. I knew I knew your name, but your face didn't look familiar so I knew it had to be a relationship on the computer some how. Your family is amazing and I hope that everything goes well with JD. We have spent many hours, days, and weeks at primary's. Although they are amazing people it is always nice to be home in your own bed so we will pray that you get answers and he recovers soon!!!
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