Kenny is doing so well. He continues each day to make a bit more progress towards healing and milestones at the hospital that get him one step further to leaving Northwestern. We both miss our Charlie dearly and look at his pictures frequently, but I'm thankful I don't have to think about his care and can focus all of my attention on working with Kenny to get better.
The last two days, he has requested no visitors because he's just been so tired. Some of the medication he is on doesn't allow him much sleep and sleep is the best thing for him to help him heal right now. He finally began getting some good sleep today and sat up in a chair for dinner tonight and then we even watched a little TV before he went to sleep. The activity late this afternoon and this evening tired him out. They are encouraging him to get up and move around to help him start to feel more comfortable and steady on his feet doing things. A physical therapist will be working with him tomorrow to make sure he is comfortable moving around on his own.
One of the "side effects" of the surgery is that he could have some hormone imbalances that could be temporary or permanent due to the work in close proximity to the pituitary gland. Overnight, he did develop one of the hormone imbalances that is called diabetes insipidus, or DI. It basically means that you go to the bathroom alot and can get dehydrated easily from that. We met with his endocrinologist today and a simple dose of medication has regulated the ADH hormone level in Kenny again. He will need to be on a pill to keep the ADH hormone in check and have blood work done a few times a week and hopefully in a few weeks it will go away on it's own. If not, it will probably be a problem that Kenny has to live with for the rest of his life and regulate with medication.
I also spoke to one of the neurosurgeons today and he is doing just great according to them. The CT from yesterday shows that his swelling and fluid retention is almost gone. He said that his MRI from yesterday is "fantastic."
I say it again...he is amazing. He doesn't remember much of the last week of his life, which I know has totally shaken him, but he just keeps trying to recover and work on his memory by rattling off facts, dates and information to me to make sure he is remembering correctly. We had a long talk last night about what has happened in the last week and I helped fill in the blanks for him. He continues to want me around all the time, I think in part because he's not confident his memory is great...when it really has come back to him wonderfully.
Physically, he looks the same since the most recent surgery was through his nose. He does have only the right side of his head shaved from his first surgery to install the VP shunt. I'm working on getting the other half shaved for him so he doesn't look so uneven. :) Hopefully Ted will be able to help him out...he's going to look great with a buzz. He does have a decent opening on his head from the shunt placement and on his belly from the shunt as well. Neither seem to bother him much and are healing.
Little Charlie...continue to be good for your Grammy. She's taking such good care of you. Mommy and Daddy love you tons and can't wait to be home with you to give you lots of hugs and kisses and Daddy's been working on some new songs for you.