Last night Jameson became more awake and alert as more and more of the meds starting wearing off. He kept trying to point to something, but his hands were tied down, so I wasn’t quite sure what it was. As soon as I asked if he was pointing to the TV he shook his head yes! This completely melted my heart. Even when x-ray came in he waved her away because her machine was blocking the TV.
Throughout the day today I have seen Jameson become more and more himself. His cheeky side is coming out. He found the buttons on his bed that adjust the head and feet and had a ball making the bed move up and down. He laughed and laughed 😉
Playing with the buttons & giggling
There was nothing like seeing his sweet smile! Oh my gosh! I have missed his smile and giggle. It was weird watching him laugh and not hearing it. He laughs from his belly and it is one of the things that just makes him Jameson, and I cannot wait to hear that sound again. But, I will take that smile any day!
And he has been communicating his other emotions just fine as well.
He has let me know multiple times just how mad he is that I won’t let him pull his feeding tube out. He seems more annoyed at that than the trach. I did ask if he liked his new trach — he said No, lol 😉
After weaning his vent this morning the doctor gave the go ahead to take him off the vent and put him on a trach collar. The deal was that if he needs to go back on the vent for sleeping he would.
As I am typing this he’s passed out on his trach collar!
The initial concern was that when he would doze off on the vent his respiratory rate would drop to 8 or 9. But ever since he’s been off the vent he’s been breathing better than when he was on it. He’s cruising right now breathing 24 breaths a minute, sat’ing 100%!
Before we took him off the vent I was showing him some of the wonderful gifts and cards that people have sent, and he got really excited. He immediately wanted to get his hands on them and play ♥
As soon as the vent was off I grabbed them and let him go to town. I untied his hands, set up a table for him, and he had a blast!
Unfortunately I had to tie his hands back down when he was done playing because he went straight for his feeding tube. He took it out last night and they had to put a new one in. He really doesn’t like it.
That didn’t last long. He has been awake enough to figure out how to maneuver in his hand restraints and free himself…Daddy said they other day, I’ll bet you $10 he figures out how to get our of those.
Yep, he did.
So, now he has on “no, no’s”. They look like shin guards that go on your arms so you can’t bend your elbows….they are working..for now 😉
I’m crossing my fingers that he has a great tonight and they can roll that vent out of his room tomorrow
I’d love for them to try a speaking valve on him tomorrow. That would be huge for him to get his voice back. But, here they have an occupational therapist in the room to make sure he doesn’t go into distress. So all of that has to get coordinated.
Then, the next big step is a swallow test. Once he passes that he can try to eat and drink real food and finally take out the feeding tube.
On Friday we have a meeting with everyone to talk about the transition process. We have to decide if we want a home nurse, and how many hours a day we want them for…Things I really hadn’t thought about before.
Thank you for keeping us in your thoughts and prayers, he is progressing well. Each day we are one step closer ♥
Playing away on his trach collar!