Mr. personality

Today, I brought Matt with me. It was so nice to have company. It quiets my thoughts. He is full of energy and tech talk. I learned so much. I probably won’t remember tomorrow. Ha. 

Last time Matt saw Daddy was right after he woke up. A very frightening view. He was glad to see he no longer looks so pitiful. 

It’s easier (for me) to read his lips; he’s enunciating by mouthing. (. A davidism - Enuciate!). He was full of wordless words today. I think Matt got a view of how difficult it is to communicate, but he was prepared with ideas on how to make it easier. So cute. Although I had to say several times, wait, I think I can make it out. 

I’m a lip reader now. Any job openings for that qualification?

He looked good today. For the last three times I have come, he is worried that we had to sell the house. I assure him that so many people love him and have given money to make it easier. ‘We have at least six months of money’ although I’m exaggerating. It’s probably more like 4 to 5 months. But one month at a time. One day at a time. 

He has been on the trach collar for over 24 hours. Whaaaa?  That means he has been breathing on his own with assistance as needed. 

Sadly, his right lung collapsed again today. They re-adjusted the chest tube and all is well now. I spoke with the Doctor. He said surgery might be inevitable. Yes, they can laparoscopically go in, but depending on where the leaks are will depend on whether he needs a more serious operation. He is finally off the steroids. And hopefully his lungs will heal on their own. 

I feel sssoo inadequate in nursing him. Really. He massages my hands, my feet, and back, etc..  he does NOT like for me to massage him. It’s irritating to him. I try to lip read, but I fall short. ‘Never mind’ is such a terrible word for me now. 

Here is what I know. He is lonely. He said that. HEARTSINK!  

I don’t know how to convey the difficulties he has with the nurses. It’s too hard to explain and do the he said she said. But, I was there, and I could be the inter mediator. 

So hard. Even Matt said the nurse was annoyed with me. But it does not hold me back. I know I am being nice. I just ask hard questions and don’t stop till I know. 

Let’s hope that if surgery is needed, it will be non evasive. Please God, please!

He was just absolutely adorable today. Fighting. And determined!  We miss him, too. 

And to say we, also, are lonely, doesn’t seem right. We have each other. He is way more lonely than we are. So please pray he does not feel alone. And that he feels ALL the thoughts and wishes that are geared towards him. 

XO

His Shelli