Letter-by-letter

There is no way to describe Dad right now other than "high need." He has lot of things to say and there is no way to know exactly what it is he needs until you complete the laborious process of spelling each word or enough parts of a word to make an intelligent guess.

When Diksha, Finn, and I first arrived to visit on Friday, his eyes lighted up and he immediately wanted to spell. I thought it would be a greeting, but instead he spelled "cho" (choking). He needed suctioned so we immediately addressed that issue and then restarted our greeting.

A few of the things that he spelled:
Bla (blanket).
Dav (wanted David the respiratory therapist).
Nine sticks (wanted us to know that they drew his blood 9 times that morning! An issue we have since addressed with the management. They will now only be using his extended IV or having the charge nurse draw his blood.)
I wish play ki(ds) Too t(ired).

He wanted to know, "Wh(en) is sch(ool out)?" and was surprised to hear that the kids finished on the 4th and that it was now the 13th. I told him that it was, in fact, Friday the 13th. I said, "You aren't superstitious are you?" And he made his eyes big and nodded his head yes.

When I told him that Tim scratched the side of our car and that he should give him a hard time about it, he smiled, rolled his eyes like "oh brother!" and spelled,  "Di(d) that to my C(adillac)."

Lots of signals about his hands and where to place them. A few of them...
Free ar(m).
Han(ds) tuck.
Pul(l).

I told him, "Mom is getting her hair cut tomorrow. You better be sure and notice and compliment her." He smiled and nodded.

Tim spent the whole day with him on Saturday and a few of the many things he spelled:
Glad you are here.
Just feel lonely.
Tell me (about) kids.

He gave Tim lots of instructions about helping him get to sleep and when to check on him and things to tell the hospital staff.

At one point he said, "Be sure and wash and use free stuff." When Tim asked what free stuff? He spelled "Gloves, mask, gown, goggles, etc." (yes, he spelled "etc") Tim then asked him was he worried about us getting him sick? And he motioned no. Was he worried about him getting us sick? No. He then spelled "no idea how contagious" and made big eye rolls and moved his head all around. Are you worried about us getting sick from the hospital germs? Yes.

Sometimes we would get in a groove and the spelling would come easily. Other times it was lots of trial and error, rising frustration, eye rolls, and restarts. This morning he clearly spelled "Idiot" but he didn't clarify who he was referring to. We let the matter drop.

The weaning process continues to be hard hard work for him. On Thursday, he weaned for 3 hours (no pressure support at all) so on Friday he tired very quickly and lasted only about 35 minutes. While he was weaning, he would start shaking his head "no" and breathing very quickly. Mom was able to help him regulate his breathing and keep his composure. I told him, "The things she is telling you sound like things that you probably said to get her through labor: 'Slow deep breaths' 'I'm right here with you' 'You can do this' 'We are in this together.'" She reminded him that she hit him while she was in labor and he smiled. When he was done with his weaning session, I asked him what it felt like when he was weaning. He nodded his head when I suggested "stretching" "burning" and "tiring."

He definitely is starting to have ideas about what he is and is not willing to do...

Mom attempted to get him to use his laser glasses to spell words using the alphabet board and he spelled, "This idea sucks."

The next day Tim tried to get him to use the laser glasses and he spelled "Moving target." He was able to clarify that with his eyes not working together it made the letters hard to focus on.

When preparing to wean on Saturday he told Tim that when he said "stop" they stop. And he reiterated the same thing to Mom on Sunday - "same rules." In light of that, we had a discussion this morning with Bob the RT about the possibility of making a formal weekly weaning plan and including Dad in that discussion to get his "buy in." Dad has consistently asked, "What's next?" and is now able to agree and disagree with treatments that are prescribed to him. The idea of Dad being able to have a goal and a say in what he can accomplish seemed to appeal to everyone including Dad. He is in a marathon and he needs a training schedule. Bob will discuss the idea with the pulmonologist. We want Dad to start gaining back his autonomy. What better way to do that than to have your very own "to-do" list?!? Today- wean for 30 minutes, tomorrow-wean for 35 minutes...

I have to take a moment to give big kudos to Mom. She is amazing with him. So so patient. When he was weaning and stressed, she talked him down from his anxiety and reminisced with him about their trip to the mountains. She was very soothing. There is little-to-no down time for her when tending to Dad. Not only is she providing loving support, companionship, and physical comfort, she is also doing quite a bit of case management. She has worked tirelessly jumping through hoops to get him an ophthalmologist. She told me "I will push on until I get one."

One big thing to report physically speaking- the Dr was able to feel Dad fire his biceps and his thigh muscles! Tim was also able to feel them. Things are coming back "on-line"!

This post has been a long one so I will end by saying to you the same words that Dad said to us a few hours ago, "Thank you for coming."