Mother's Day Weekend- a post by Becky

Today's post is by Becky...

I took the kids with me to visit this Mother's Day weekend. We had a great visit. On Mother's Day, we had a nice lunch with Mom on the deck and then we took her to Riverfront Park and all five of us rode in a surrey. It's a four person bike. Charlie rode in the basket at the front :)

Then we went to see Dad at the hospital. Diksha had seen him a couple weeks earlier, but Joshua had not seen him since around Christmas time, long before he got sick. I wasn't sure how Joshua would handle it, since he was wary to see Dad in the earlier stages. We got there Friday evening, and Joshua went right up to him, said "Hello" and started to talk to him about all of his "goings-on." He needed no prompting. I was very proud. Dad seemed to really enjoy seeing them. 

On Friday, they tried to take Dad off of the ventilator for a brief period and just pass oxygen through his trach. He lasted for about 30 minutes, but his CO2 levels became elevated so they returned him to the machine. He got pretty worn out. On that same day, OT/PT helped him sit up on the edge of the bed (with legs hanging over the edge). They said he did not tolerate it well, was really dizzy, so they laid him back down. Side note - well worth mentioning! - Dad began weaning on Thursday morning and was still weaning as of Sunday morning before church! That's about 72 hours!!! Then RT said he was experiencing some pain in his chest with the breathing, so they took him off to give him a break for a while. RT Bob said they would put him back on Sunday evening if he felt up to it.

Needless to say, with all of that going on, he was quite sleepy all weekend. He talked on Saturday about wanting to be sitting in a wheelchair, and kept looking at the bottom left of his bed (eyes AND head turn) as if to say he wanted it right there. He is not ready for the wheelchair yet but the OT/PT said they might try to put him on a "sling chair" on Wednesday. This chair can recline like a bed, or sit up like a chair. It would possibly allow him to leave the confines of his room. Dad seems really interested in doing that.

His eyes are looking less red. His left eye seems to be closing a bit more. He still has a lot of difficulty seeing and feels that if he didn't have the eye drops in he could focus more. Speech therapy is working on creating a laser attachment for his reading glasses for when he starts to move his head more and his sight gets better. This will allow him to point to things he needs with more precision. 

RT tried to check for a gag reflex, thought they felt one, but then couldn't get it to go again. Dad said he thought he felt like he was a little more than before, but it's hard for RT to tell. Once the gag reflex begins to return they can start giving him things with flavor to try and stimulate a swallow. 

Baby steps. Waiting. And more baby steps.

Dad has been enjoying visitors but also likes peace and quiet. When people come they feel the need to talk and entertain him, but he also simply likes people just "being there." While Mom, the kids, and I were there, Gieglers stopped in for a wonderful surprise quick visit after church/lunch. We were chatting with each other and Dad, then Dad told us he wants us "ALL OFF." LOL!! We were wearing him out I guess ;)

Some of the things he said/wanted/did this weekend:

"WHEEL(chair)"

"CELL PHONE" - wanted to hold it :) Does it feel good and normal? "yes"

He is doing more head turning WITH eyes tracking - down to right and down to left, also up to the right. It seems as if he is clearly trying to tell us "down there" or "up there," but without spelling. I have to say, it helps me anyway! :)

Other things he spelled were some of his regulars..."WHAT IS NEXT STEP", "WHEN CAN WE GO TO CONDO," etc.

On Monday, his OT Judy said she got a smile out of him in the early morning! We asked him to try it again and he was able to move a muscle on the left side of his face! These were NOT the same movements you can see when he is moving his chin up and down and side to side. It was crystal clear that he was, in fact, trying to smile :) Won't that be the best day????

Becky :)