Late Saturday Night - A Josiah Update

Sorry I hadn't posted anything earlier in the day for Josiah. Most of our day was spent in Josiah's room. And, we were TIRED. I think I had less than 5 hours sleep last night, 2 nights in a row now.

Josiah has ended his day well, but man he had a poor start. We had called the hospital at 7:30 AM to see how Josiah was doing and the nurse let us know that he was still sleeping. FIVE MINUTES LATER the nurse has to call us back: Josiah had just d-sated/bradied which was followed with a tactycardia (high heart rate - in the low 200's - which is the opposite of the brady). Of course this is a concern and a demonstration that something is wrong. The nurse thought that Josiah may have aspirated (milk coming up and going into the lungs) because he had just finished a meal or that his infections took a quick turn south. Josiah was also quite pale at this time and needed oxygen, so the nurse called in for 'the works': x-ray, bloodwork, and antibiotics (new IV line in the head - again).

When I showed up, it was good to know that daddy has 'the touch'. I stepped in and assessed the situation: a seriously ticked-off kid who had a major flip out and is now being poked and prodded from head to toe. The answer was simple: a little "Daddy is here" in the ear and a soother in the mouth. Like magic, eh?! He settled down pretty good after the staff were done with their tasks, and thankfully all the results came back saying Josiah was totally fine and nothing had changed from the day before. The doctors were also pretty confident that he didn't aspirate because the suctions brought up no trace of milk. Basically, Josiah woke up and - not getting the suction when he needed it because he was having difficulty breathing - he got angry and flipped out which started this domino effect. And Marie and I remembered afterwards that we forgot to note in his care plan that Josiah always gets really pale after a major stress episode, and we've added that to his plan so that in the future nurses won't confuse his paleness with sudden sickness.

The doctors have given Josiah a continous order of bentalyn (the same substance you find in asthma puffers), which seems to really have helped him breathe deeper. He sats a lot better, and maintains the 'Swedish nose' (his filter which attaches to the trach hub) really well too. With his trachea issues, its quite possible that Josiah will need a something like a puffer for the rest of his life, but we'll see how this goes on for him.

The first couple of times the RT's tried to administer the bentalyn, they opted to try bagging it into him. JOSIAH HATED IT: he bradied and d-sated like there was no tomorrow. Basically, he hated the fact that he wasn't doing the breathing and freaks out when someone tries to breathe in/out for him. So the RT's have rigged up a different way for him to receive the drug (attached it to his humidity hood) and Josiah's totally fine with it.

The results came in from Josiah's EEG scan, and the doctors confirmed that he has abnormal brainwaves (which we could have predicted), but for now it is not a positive for seizures. However, it is possible that he gets seizures later in life. Also, the geneticists have taken their pictures of Josiah as they are getting his file ready for NIH.

Josiah's trach stoma is looking really good - the new dressing (Aquacel) is really doing the job. The ulceration is narrowing and is growing in healthily from the bottom up. Josiah's stomach incision isn't the greatest, but the doctors think it is improving. They were at point thinking about cleaning out all the junk and re-stitching him, but they don't think he'll need that. But he'll probably end up with a really sweet scar!

Josiah is so incredibly cute! He wiggles and squirms so much, and his limbs go all over the place. In the middle of his sleep he'll totally stretch his arms straight up and then scrunches up into a ball as he pushes some secretions up. So funny - you have to see it. He is playing with things a lot more with his hands which also is encouraging to see.

Please pray that Josiah will continue to heal from his infections, that he will grow and develop well (mind and respiration system), and that God will protect him from harm.

And finally, we got to visit our former-NICU friends Mike, Jen & Caleb P. tonight. You guys are a big blessing to us. Thanks for everything.

Good night all! I'm so done :)
- Andrew, Marie & Josiah