They're bringing Aaron into the hospital on Tuesday morning to work on his vent settings. Since he's a little turkey who really, really likes his oxygen, we're going to the PICU. I know, you're saying, "but it's so much fun to see different things and have multiple rooms," right? Yeah, well, we try to not stir up too much trouble on the floor, and 12 liters of the good stuff makes them nervous. In the PICU on the other hand, well, no one even blinks. They just take care of business.
So we're checking into the hospital at 10 on Tuesday, perfectly well and not struggling, and being admitted into the PICU. Vent settings will be changed and he'll be monitored. Ideally, it will take about 48 hours to get everything put together and make sure they'll work. Ideally, lots of things would work. The nurse told me it's kinda a child-driven thing. I told her my whole world is child-driven, sometimes it's a different child, but for the last almost 26 years, my life has been child-driven. So I should be used to it??
Anyway, I think I'm channeling some PTSD in advance. This one really should be a no biggie. Check in, change things, if they don't work, change them some more. When everything looks good, head home. But the reason we're getting it done is he has a heart catheterization coming up August 16th. That one has me nervous, really nervous.
For a heart cath, they'll put him under and then thread a small tube up through his femoral artery, into his heart. There pressures will be measured, different medications tried and pressures re-measured. When they have all the data they need, it will be done, he'll be brought to recovery where he'll need to be still for several hours (a challenge in and of itself) so he doesn't dislodge the clot over the artery. Then we go home. Ideally.
But there are so many places things can go wrong. I mean, it's a foreign body in the heart. His already sick heart. Kids (and adults) code, their hearts stop, from time to time in the cath lab. It used to be that Aaron tolerated anesthesia really, really well. Not for the past few years. It kicks his pulmonary hypertension AND his asthma into high gear. Plus, in order to really get a feel for how he reacts to the meds, we have to stop his heart meds that morning, the ones that I never, ever skip.
Can we say nerves???
Please, please keep our little guy in your prayers over the next few weeks. Please pray that we can find better settings on the ventilator. Ventilators already keep the pressures in the heart and lungs higher than they otherwise would be. We need settings that will support him, but not go beyond what he needs.
Please pray that he will tolerate the heart cath, and that we can get good information. If you're so inclined, pray that we'll have better results than before. It would be wonderful if he could get to the point where he could safely have surgery, but even if it's just that it's not quite as bad that would also be great. I know prayer works miracles. I've seen it. I've felt it. And once again, still, always, we're storming heaven's gates for another one.
We'll be fasting for Aaron next Sunday. If you're Mormon, or even if you're not and want to join your faith with ours, we'd be so grateful. (James 5:15) This one has me worried. I'm trying so hard to give it over to God and have hope. Please join your faith with ours.
Have Defiant Hope, because reasonable hope isn't really hope.