I’m completely losing track of days at this point. If it weren’t for keeping up with blog updates I really wouldn’t have a clue. I know we’ve been here about a week now, but that’s about it.
Yesterday was Day 8..
Yesterday Jameson woke up at 7:30am. I had literally just woken up and was getting up from my bed-chair when his eyes opened. From that moment it was game over for me. I was lucky to get a bathroom break and brush my teeth when respiratory came in to give him his treatment at 8:00am.
After his breathing treatment OT came by to assess his strength and mobility since he had been laying in bed for a whole week. He couldn’t really put any weight on his legs, and was really, really wobbly. We walked from the bed to the window, which is about 4 feet, and around the rest of the room. But his balance and strength was completely gone. Once he got the taste he wanted to keep trying, and as the day went on he got better and better.
Then we got a visit from the Speech to do a swallow study. He passed that with flying colors and has been eating ever since.
Our final visit was from PT in the afternoon. He took Jameson for a walk in the hall. He spotted a wagon and was literally trying to run down the hall while pushing it. But, being wobbly still and a little off balance it was ridiculously crazy to watch! Seriously, it was a Jameson moment where the doctor was literally awed and was completely not expecting that from him.
He was so active that his trach collar would come off. I wouldn’t rush to put it back on and just leave it to see how he’d do on room air without any oxygen. He kept his sat’s at 99-100, so when his RT came back in the afternoon I got her to bring me some HME’s 😉 He’s been wearing it ever since 🙂
I thought for SURE after the day he had that Jameson would be asleep by 7:00pm — he stayed up until 11:15pm. He was laying in the dark for hours. I think that his body was actually overwhelmed from everything he did. When we started quiet time around 7ish he couldn’t get comfortable, and then he got really, really hot and sweaty. His temp went to 100.2 from 98.4, but came back down again after he fell asleep.
He slept like a baby when he finally fell asleep tho. Mama did too. I was literally held hostage all day. I couldn’t leave him because he would panic or get anxious. I did not even get out of my pajamas.
Today was Day 9
Today started off rough for Jameson. I think his body was sore and beat up from yesterday.
Mama, on the otherhand, woke up super early, around 6 because I knew if Jameson beat me it would be game over for me two days in a row. So, I got up, got a shower, and coffee. I even bought lunch when I went down for my coffee and banana because I knew I wouldn’t have another chance.
OT was here first thing and Jameson did not want to wake up. She had him get dressed and he literally did it with his eyes half open. Once he got moving his spirits brightened up again. But throughout the day it was back and forth -he was moody, he would be doing good, then crash a little from being overwhelmed.
It has been crazy trying to keep Jameson busy. Jameson is ready to go home. Medically, there is no reason to keep him here. The one and only reason we are still here is because mom and dad have to be signed off by the hospital that we can do trach care. The plan right now is for Jameson to be discharged Thursday morning.
He got his feeding tube out and I put his custom trach in today! It looks so much more comfortable too ♥
We went non-stop again today, but he went to bed much easier tonight 😉
Now that Jameson is awake and back to his old self, everyone here is getting to know him. Everyone has been so shocked to see a kid get trached and bounce back to where he is now a week later.
I’m not. I know this boy.
I have been pushing for him to be weaned quickly from the vent, I asked for a pasy-muir valve, and today I asked to cap his trach. It was mentioned that I am trying to move too fast…Sorry, but I treat the patient, and I know this patient better than any other patient I could possibly have. There’s no reason not to try and cap him. I am not expecting him to just talk again. But he’s got to build it back up, and you have to start somewhere…
He’s lost confidence in his voice and ability to produce any sounds. He hasn’t figured out how to move air around his trach.
He’s trached for the sole purpose of curing his sleep apnea. During the day he has no need to bypass his upper airway. He has already realized it’s harder to move air and if he doesn’t have to do it, it’s simply easier to breathe through the trach, The sooner he gets on a pasy or capped the sooner he gets working on what he needs to. My opinion is why wait? If there is a marker we’re looking for to do that great, but the biggest marker is a patent upper airway. He’s got one. It’s going to take baby steps to get there, but he has a patent upper airway when he’s awake. Let’s make him use it.
Obviously, we’re going to do our own thing when we get home. But sitting around a hospital just “waiting” is miserable!
Being here, more like living here until next Thursday might kill me. I’m glad that Frank will be here on Monday!
I was asked twice if we wanted Jameson to ride back to San Antonio in an ambulance. I said no the first time. I said absolutely not the second time. Then I was told that I should have a nurse in the car driving home with us.
As politely as I could, I tried to explain, again, that I am a respiratory therapist – what is a nurse going to do that I can’t or wouldn’t. They would just be an extra body in the car. Jameson is a boy with a trach. It’s not the end of the world. A trach is a trach. Does everyone with a trach take an ambulance wherever they go?? Are we going to ride in an ambulance when we go on vacation and drive across the country??
Leave my boy alone.
Do not put him in a box, tell him what he can’t do and limit him before he can show you what he can do.
In two short days since waking up he is showing them. By the time he leaves on Thursday there won’t be a person here doubting what he, or mom and dad can do.
What haven’t we done these past 2 days!?!
Finally laying down for quiet time yesterday!
We built a Lightning McQueen racetrack
He wanted to be the one taking pictures
Quality photo shoots
We did arts and crafts
More arts and crafts..
Even more arts and crafts..
Played with Paw Patrols..
Made an art gallery from all the arts and crafts
Skyped with Daddy