by The last 24 hours or so have been rough, but we are hoping things are looking up.
Normal people have an oxygen saturation level of at least 95%. Because of AJs heart condition his goal is to be 70% or higher. Usually he hangs out mid 70s and jumps to mid 80s when he’s asleep. Once in a while he will drop down to 68 and put everyone on alert, but he usually bounces back up. That number is the main number we typically look at when watching to see how AJ is doing, and is why most conversations start with “how do his sats (oxygen saturations) look”.
Last week he started having issues maintaining his sats and needed additional ventilator support and we went down to cath lab to have his shunt checked out to make sure blood was flowing appropriately. Everything looked good from a heart standpoint and when he came back up and was waking up post procedure he magically seemed to be better, leaving everyone’s best guess to be that he’s just fighting a cold/infection of some sort. All week he’s been largely fine.
Then Sunday evening he started struggling to maintain even the 60s at times dipping into the high 40s even. The last 24 hours or so have been a series of adjustments. First it was discovered he had a lung collapse so we did a few different things with his lungs to keep them popped open. But tonight even that was failing to work and he was requiring more and more support, and vent changes were no longer really helping him any.
After a number of pow wows, the decision was made to put him on nitric to help relax the blood vessels in his lungs, he does have an infection that could be causing it… So far his saturations are looking better, but there’s no guarantee that’s the answer either, there’s a lot of trial and error and measuring and remeasuring. My prayers tonight are focused on his medical team and guiding them in the right direction.
On another note, that really shouldn’t be overshadowed by anything else — the benefit on Sunday was amazing. So many friends and family, so many new friends, people from the community who we had only met a time or two, people who shared their stories of friends and family with other congenital heart defects or Down’s syndrome. It was amazing. I can’t come up with a better word for it. The weather was cold and cruddy and we weren’t sure we would have much in the way of a turnout, but we did. We may not be from the area originally, but it’s so, so nice to belong here. We love our community so much. And an extra big thank you is needed for Keystone Turner Hall and the Turnerettes for hosting/organizing everything. 💕
