At least we have confirmation that infection in Ty's cerebral spinal fluid is the cause of the fevers and the pain he has been experiencing since Friday night, and his medication has been adjusted to aggressively fight this infection. As a result, Ty was sedated today for a sterile procedure. They placed a PICC line in his arm so we don't have to continue replacing his IVs and so we can provide him with nutrition intravenously (since he pulled out his feeding tube yesterday). Since the procedure, which started around 1PM, he has been pretty much sleeping it off, which is a good thing because there is a lot of healing going on.
The highlight of the day was that Ty passed a swallow study this morning. He was very reluctant to do it, but we forced the issue and we are so glad we did because it proved that his cranial nerves were not further damaged in surgery and he maintained the ability to eat on his own. A tremendous victory! We can't wait until he feels better so he can enjoy some chocolate milk and ice cream. This also gave Ty more confidence with swallowing and showed him that his mouth "does work" - he can taste his food.
The worst part of the day was receiving the news that Lou and I are getting kicked out of the Ronald McDonald House. Ty's infection has resulted in "isolation status" at the hospital, and the Ronald McDonald House doesn't allow families in our situation to stay in an effort to control spreading bacteria that could be harmful to other immune compromised kids. It's okay, we can return in a few days when his antibiotics cycle is complete. In the meantime, we will be tired from schlepping back and forth, but we will figure it out.
Lou is especially upset, because he is so mad at McDonald's but he loves it too much to commit to giving it up.
XOXOXO from Ty