by First things first – Daddy arrived on Saturday! Okay, so technically it was 1 am on Sunday, but around here days are counted based off of bedtimes and awake times! And yes, we did go to the hospital so he could visit before turning in for the night. I think a certain little boy was happy to hear his daddy’s voice.❤️
Yesterday (Sunday) was pretty quiet. Most of the day was spent getting his AJs ventilator set at an acceptable rate to extubate from, Aaron‘s friend Leslie was even able to come join us and go out for dinner and we turned in for a relatively early night.
Today was a busy day. Around lunch time, AJ had his ventilator tube taken out and had a CPAP nasal cannula put on instead. He struggled a bit with the nasal cannula, so they switched him to a mask. He looks like he’s struggling a little still – his tiny little belly sucks in around his ribcage a little still when he breathes on occasion, but it’s not every breath and all of his labs look good and are slowly improving… So we left tonight with him still on the CPAP and are praying for the best! The Drs let us know that he is very much teetering on the edge of what they think is acceptable for breathing, but as long as he continues to improve, his gasses in the labs look good, and his X-rays are clean, he will stick on the CPAP and won’t have the tube put back in. We are headed to bed feeling cautiously optimistic, but prepared for the call at any hour that they want to reintubate him.
We also has a meeting with his doctor today about what to expect going forward, and he confirmed what we were already suspecting – that we may need to stay here until after his second surgery is completed, which would be around 4-5 months most likely. All in all he is progressing – slowly, but progress no less… But the interstage period between the first two surgeries is a pretty high risk time, so it’s likely they will want to monitor him here. I predict lots of travel back and forth for Daddy and Averie and a trip home for myself here and there too. We have enough air miles for 2 more round trips for aaron or Averie compliments of a friend donating their miles to us. I’m pretty sure I’ve mentioned before how amazing my friends are right?!
Keep praying that we keep progressing, that we are able to stay off the ventilator and keep the CPAP and that things keep heading in the right direction!!
