July 9, 2015 ~ Tyson’s Disability Story

Today was very interesting and informative. We had about 4 different Neurosurgeons in Tyson's room at different points through out the day evaluating him and going over his clinical signs and learning his story and what he has been doing recently. After the neurosurgeons talked to us and then reviewed the MRI with the Radiologist they came to the conclusion that he did not have hydrocephalus (swelling of the brain ventricles). I will be talking to the doctors more tomorrow about the exact details because I heard the results second hand from his nurse because I wasn't there when they came back to talk to me. But this means that as for right now he does not need a shunt put into his brain to drain the fluid. We will of course continue to monitor him and evaluate as time goes on but he is not showing the normal symptoms of hydrocephalus.

The normal symptoms they would typically see are increased sleepiness (which he has but we think it has a lot to do with all of the drugs that he is on to make him sleepy), constant irritation and headache that is not better with Tylenol or Motrin, sunset eyes which is a constant droopiness due to increased pressure in the brain, head size getting bigger (his has gotten smaller in the last few weeks) and a tight or swollen fontanel (his is very soft). Because he doesn't have any of these they were kind of confused on the results and I am interested in finding out how they came to their conclusion but I am happy that we could potentially be going home soon and that he wont need an additional surgery!

Today we also worked with a physical therapist who brought in a mat and set it on the floor to work with Tyson. She helped him sit up and hold himself in a crawling position. Things that used to come naturally are very difficult for him now and take a lot of effort and energy to do. He defiantly didn't like the crawling position and he was very vocal about not liking it which is fun to see. Tyson and I also went on a walk outside today for about 5 minutes where he was able to sit in the sun and enjoy some fresh air.

In the afternoon we saw a highly recommended Cranial Sacral Therapist who came to the hospital to work with Tyson. She used to work at the hospital as an Occupational Therapist but now has her own practice doing the cranial sacral work. Usually they do not allow outside people to come in and work on patients but in this special case she was able to come in and work with Tyson because the manager of the therapists approved it. She also bills through the hospital while he is there which is great. But she was able to read him and do some work to evaluate how his spinal fluid is flowing and help his anatomy align and through eventual work hopefully help his spinal fluid flow better. I know to most people it sounds crazy but I really believe that the medical doctors saved his life and that alternative medicine and nutrition will help him heal. It was beautiful to see him release energy that was stuck and because I was holding him during her whole session I could literally feel the energy moving and working in his body.

I have asked several doctors about doing alternative medicine and crainal sacral work and most of them disregard it and don't think it will do anything but they also don't think will do any harm so why not give it a shot. I am defiantly not satisfied with their solutions to helping him improve long term and I really believe that these alternative methods are going to be very beneficial. I don't expect miracles but I am hopeful.

Later in the evening my Aunt Joy came and stayed with Tyson while Grandma Kim, Grandma Donna and myself went and got our nails done. It was fun to be with both of them and enjoy that time together relaxing. we were latter able to go out to dinner with my Aunt Joy and enjoy some time being together and talking.

I don't know when we will be going home but I believe it will be some time in the next week. He is on a lot of medications and will be going home with a PICC and two more weeks of antibiotics, and his g-tube. It is a lot to take on but I am up for the challenge.

I am sorry I haven't posted very many pictures recently. It has been difficult to do with the computers that I have been using for some reason but here are a bunch from the past little while.