update from ron
Tyler took a step back yesterday. They had to take his vent pressure up, oxygen up, and give him dopamine to stabilize his blood pressure. Yesterday I was overjoyed, but today I am reminded that this is going to take some time. There will be many peaks and valleys in this process. Nonetheless, he looks […]
encouragement from tyler
When Tyler was home over Christmas, he was feeling better every day. He was very aware that when he went back to the hospital on 1/17, he would be getting much sicker again. I suggested that “healthy Tyler” create an iTunes playlist for “sick Tyler” that would encourage him when he needed encouragement the most. […]
beautiful freckles
Looks like a multiple post kind of day…we’re learning that information trickles in hour by hour. Ron and I had a chance to speak to the Attending after rounds today, and despite Tyler’s vent settings going back up, there is some very heartening news she told us. There’s a value they’ve been following that we […]
moving in the right direction
Today could be a big day for Tyler. He may be switched from the Oscillator to a conventional ventilator with APRV settings! APRV cycles between high lung volumes and low lung volumes and will allow Tyler to breathe spontaneously at either level. This is opposed to the Oscillator which does not allow Tyler to breathe […]
vent switch-over delayed
The vent switch-over isn’t going to happen today. We thought it was going to happen at 3pm when they brought the new vent into his room. However, they first wanted to make sure he could tolerate a reduction in pressure on his oscillator. While he did very well under a lower pressure setting, there were […]
vents switched!
I originally tried to post this two hours ago so as not to keep you all waiting for news, but for some reason when I just checked, my post wasn’t there. Due to the delay, I can share a story. Dr. Gamper, Tyler’s transplant doctor, recently stopped by to chat. Ron asked him if he […]
setback – prayers needed
Just a quick update – more details later after rounds. Despite doing great on the APRV vent and having his settings decreased last night, Tyler had to be switched back to the Oscillator at 6:30AM. His blood gases showed too much CO2 in his blood. He also spiked a fever (first one in a week) […]
a guessing game
We didn’t learn too much more after rounds. Tyler did spike a fever last night and does have increased lung secretions. It could be a new infection, or the fever could be explained by yesterday’s decrease in steroids, which often mask fevers. The increased secretions could be from the APRV vent dislodging more mucous from […]
some improvements
I’ll have more details after rounds, but it appears that Tyler does NOT have a new lung infection – he has had no new fevers and no new lung secretions. The fever and the increased secretions can likely be attributed to the switch to the APRV vent. Also, Tyler is actually doing better on the […]
a great day
Tyler has made REMARKABLE progress on his oscillator today. They have weaned his settings down 2 times, and his blood gases are the best they’ve been so far! His kidney and liver levels continue to improve. Tyler remains OFF the paralytic medication. This has been such a great day for him!
2 weeks in the picu
Ty has been in the PICU for a little over two weeks now. He’s still making progress! They got a little too overzealous with the weaning yesterday, and he had to come up a few notches last night due to CO2 build up. But that’s OK, since we want to them be as aggressive as […]
re-post
I was just scrolling back through this journal, looking for some of the scripture we’ve posted, because I desperately needed encouragement. I came across this post from November. I am reposting it since so many new folks have joined Tyler’s CaringBridge site in the past weeks. As I re-read the post, despite the very changed […]
a new understanding and specific prayer requests
In the immediate days after Tyler’s condition was at its worst, he surged a little – just enough to pull him back from over the edge. That was the miracle we needed to save his life; even the doctor said there was no explanation for it. In the last week and a half, we’ve been […]
quick update
Just a quick update on Tyler’s condition. Today was much like the previous days. His blood gases improved enough for him to get weaned a little from the settings, but then after the weaning his blood gases would get worse, so they would put the settings back. Overall his picture continues to be at least […]
no changes
Nothing new to report today. Last night Tyler tolerated a drop on one vent setting, but he just had to get bumped up again. His lungs just need to heal more.