by Today was an eventful day for Mr AJ. They tried taking out his breathing tube for the second time. Unfortunately, he wasn’t a fan of the idea. He was working pretty hard to breathe and had a lot of secretions (aka slobber!) making it difficult for him to manage without the ventilator. He got to the point of being inconsolable despite getting a few hefty doses of medications and roughly 1.5 hours after having it taken out he had it placed back in.
The next steps are to meet with ENT to check to see if there are any abnormalities that need addressed and discuss putting in a tracheal tube. We are expecting they’ll put in a trach early next week. They will be able to keep him on the ventilator more safely for longer term with the tube placed through his throat rather than going down his nose/mouth, so although it’s another procedure, if he can’t get by on a cpap/bipap, this is the next best thing. If they do put the trach tube in he will need to remain still for a week while the area around it heals, but after that he will be able to be less sedated than he is now and can move around more. It was hard news to take in, despite knowing it was an eventual possibility, but it’s not necessarily a permanent answer either. It’s possible he would only need it for a short time rather than indefinitely. Much like everything else with AJ has been, it’s something we will have to take just one day at a time.
We also got confirmation that he does have a blood clotting disorder (Factor V Leiden) that is genetic, so we are going to explore whether or not the rest of us need to be tested – we were told though that if we aren’t experiencing issues with blood clots, it’s not something that needs to be proactively treated.
For the rest of the night the hope is that we can just rest and relax… I think the 1.5 hours of being off the ventilator was enough excitement for one day.
Prayers and happy thoughts are appreciated, as always.
