A little sky

We have homeschooled/are still homeschooling.  I never had to ‘drop a child off’ to kindergarten. But I feel a little of what it’s like every time I go home; especially today. 

They moved him out of ICU today and into a regular room. 

Yay!  You say...  and yay is a good response. For me? It’s scary. No more glass doors and beeps and monitors and constant checking. 

When he pushes the nurses button, they don’t come ‘now.’  He does not have a ‘beeping’ monitor in his room. Everything is monitored at the nurses station, which are mostly empty. 

His new nurse told me that an employee in another room is constantly monitoring his breathing and heart rate, and if they notice any altercation, they notify the nurses right away. Comforting...

I had just established a good and constant rapport with the ICU nurses. Now I have to start over. 

Thankfully David can tell me if things aren’t right and I can address issues on his behalf. Although he will have to learn to speak for himself and become more self sufficient. 

I noticed they don’t ‘try’ too hard to understand what he is saying, and they turn to me for interpretation, but I am not always there. 

It’s only the first day, but it was hard to see him moved and hard to leave. I cried all the way home. 

He cannot walk; go to the restroom, sit up, move or change positions. He cannot eat food and still has tube feeding. His chest tubes are still there. And his breathing is not great. It is a struggle. 

He talked to his mom today, with the ‘speech valve’ on. He sounds mostly great with that attached to his trach, but he cannot wear it for long periods; thirty to forty-five minutes at a time. If he goes longer, when he takes it off, he has coughing fits that are endless and bring panic to my heart. 

 I fixed his new room up, that was in disarray, and made it tidy and warm. I moved the bed desk close by and put a few things he could ‘maybe’ reach but may need assistance. Did I say it is a struggle for him to even push the nurse help button?  

But he is re-learning everything. I see his once strong arms weak and feeble; with sagging skin. His shin bones that are well defined on his legs... his sunken cheeks that try to be hidden by the beard that has grown much, but doesn’t hide that fact from my view. 

But, he’s in the big boy room, can actually see out of the window, a little bit of sky. The machine beeps are silent because they are no more. Maybe...hopefully...he can actually get a good nights rest without all of the pokes and prods and beeps. 

And I have to trust... they are in top of everything while I am away. 

He has started to have nightmares that seem so true. And it fearfully shakes him. Yesterday he was asking me ‘hush hush’ questions....’did this happen?  Did that happen?’  Very terrifying inquiries, to say the least. 

I listen, and try to interpret what he ‘thinks’ he remembers. ‘Yes,’ I say ‘this happened, but your brain has interpreted differently.’ And I assure him all is well. 

The doctor told me this would happen. I was prepared. And, so far, the things he thinks are real are not exactly how he thinks but in a bizarre way are a mirror of what truly was real. 

However, he is finally off of the pain meds that cause temporary amnesia to avoid PTSD. And is only on hydrocodone  a few times a day. 

On a good note, he is being quite feisty, or rather, his true self. He doesn’t always show that side to others, only those close by. And, for me, that is good. I know he will defend himself and have a ‘voice’ so to speak, to get help when needed. 

That will be hard for him; he hates to be a burden. But I threaten him everyday before I leave...’you better push that button when you need help or I am going to be so mad at you.’  And he looks at me with his big little boy eyes as if to say, ‘Yes m’am,’ and mean it. 

He is a very unbossible man 95% of the time. But the other 5% is all mine and I take every inch. ;)

And so, that was my day. 

I did get him some ‘Do Rags’ for his crazy unkempt hair. (See attached pic) 

And combed his unruly beard that will not budge from hanging over his lip despite my greatest efforts. 

He is on blood thinners to avoid clots, from being bedridden, so shaving and trimming are out of the question at this point. 

He so wanted me to cut his fingernails that had grown to a nice length for a French manicure...but the nurse forbid it. And that was that. 

I have written more than I thought I had words for, but there was so much to update on. And I wanted to make sure you knew that we are not out of the woods just yet, but at least we can see a little sky. 

Love,

His Shelli.