Friday Night - A Josiah Update

Laaaaaaaaaate Friday night. Well, not our lastest yet, but it has the potential. A few minutes past midnight and Josiah is wide awake ... again. Maybe he just has it in him to be a late night baby? Who knows, but we'll keep trying to get back on a more reasonable wake/sleep pattern.

Josiah is doing fairly well. He's throwing up these days, which is weird and different but he's doing OK with it. He's got some pretty strong lungs, shot his last stuff through the crib bars onto his nurse and the wall about 20 inches from him :) Good man ...

The trach doctor came by yesterday, and we found out that Josiah's 'freak-out episodes' are pretty common for infants with trachs. It basically works like we figured: the airway becomes partially or fully acluded for a moment (closed) and Josiah reacts with fear. Than with that anger/fear he gets so worked up that even though the airway is open enough, he can't breathe until he calms down and essentially he has a panic attack. Yeah, sounds stressful. If these episodes keep up, it may keep him in the hospital longer so we're praying and hoping that he learns to deal with them calmly so that he can get out!

Josiah has a custom fit trach coming in any day. It's the same size hole (3.0 mm) but the hub (tube sticking out) is extended so that his chubby cheeks don't cover up his airway. It's been about a month now that he's had his trach so he's definitely due for a change (they need to be changed at least once a month). There seems to be a notch at the top of his current trach (probably from wear) that is kind of diggin into his neck, so we've got him taped up a little to protect him.

Some prayer requests that you can keep in mind:

• Daily protection from harm and injury, especially from potential aspiration by throwing up
• Develop a proper wake/sleep pattern
• Will continue to be dealing fine with the weaning of his sedatives
• Healing/development of the epiglottis so that it will work properly
• Secretions will lessen (not need suctioning as frequently) - a big one for coming home sooner.

It looks like it won't be a problem getting the nurse care at home. The nurse that met with Marie yesterday strongly encouraged that we take our shifts all in the evening because it seems to work best for families, and if we take all evening shifts we may actually get MORE than 56 hours a week - BONUS! :D

I know you probably want more pictures up of our fella. I just haven't been having the camera near by it seems; also, I'm spending more time in Abbotsford these days. But more pictures will come soon.

Josiah had a sweet 4+ hours with his great grandparents today! Grandpa and Marie Haak came in today and cuddled Josiah all afternoon and he loved it. I think he was awake almost the whole time and everyone had a great time. So awesome to see. Marie and I asked them to come in to 'babysit' because we wanted to go out for our anniversary. It was nothing special: stroller and car seat shopping at TJ's and Babies 'R Us. Yeah. :) We even went for dinner, Big Macs because we were so desperately hungry. Man they were gross. I don't think I'm going to have McD's for at least 3 years.

We also went to see Shrek the Third with Tim & Christine (another couple in the NICU that we've become really good friends with). Waaaaaaaaaay better than the second, but doesn't have the charm of the first. Anyways, it was funny, way too short, but a worthy way to spend 8 [gasp!] bucks. Oh, and you get to see a trailer for Transformers if you haven't already viewed it online :) Next week maybe we'll catch the third Pirates ...

Hmmm ... I think I'll wrap it up there. Time to go see if Josiah is sleeping yet (doubt it) and then off to bed. I think I have the early shift tomorrow (Marie deserves to sleep in) before I go back to Abby. Thanks for all your prayers and continued thoughts. This has gone way longer than any of us could have imagined, and we are so grateful for your perseverance through this with us. You really are the manifestation of God's heart.

Cheers.
- Andrew, Marie & Josiah