Wednesday Afternoon - A Josiah Update

Hello Folks

Here are a few things that you'd probably want to be aware of:

First, we have secured a condo to rent in Abbotsford for May 1st. Yahooo! It would have been SO NICE to stay in the Arnold/Sumas Prairie area, but accessibility for Josiah had really nullified any options that may have been out there.

The condo is affordable, clean, new-ish and quite well-lit, about 1000+ square feet. Two bedrooms, two bathrooms, and some of the 'bonuses' that really clicked with us was the fact that the common bathroom had an extra door connecting to Josiah's room (great for the nurses!), we have 2 underground parking stalls (definitely needed!), and there's room for our deep freeze (which is pretty awesome for an apartment). We're working on getting our old Toyota back from Alberta so I can have a second vehicle (a must now that we're going to be living in mid-town Abbotsford). And we officially started packing boxes last night.

Between the packing and the meetings gearing up towards Josiah's discharge, there are so many other things on the go: a lot of shopping (lots of basic kid stuff that we haven't purchased yet), trying to schedule a slot for a 'care by parent weekend' (practice taking care of Josiah by ourselves for 48+ hours), giving Josiah a lot of practice driving, and so on. We were able to find an incredible person at a furniture store in town who has a local contact that makes custom beds, so we're having something made just right for Josiah and we're so ecstatic about that!

Josiah's time in the OR yesterday morning went well. His ear tube was completely blocked, so they cleaned his canal and replaced the tube. But all in all, he took it very very well.

We haven't been able to go on any more 'van rides' other than the trip to the mall last Saturday. Josiah did GREAT and really enjoyed his time, not fussing even once (though we did recognize that after an hour he was getting quite exhausted and presumably overwhelmed). He had another seizure that night, his third in-sleep seizure in less than a week that we are aware of.

These seizures are quite different: his vitals may not be affected (heart rate and sats stay fairly normal) but he's completely unresponsive through the episode (you can pry open his eyes and he does nothing), and if you're at his bedside you can see his body do mini-gyrations, little quivers through his torso and into his jaw. It could be all the 'new-ness' being introduced into his day, but it's also symptomatic of being exhausted and working hard.

Today Josiah has been having an off-day and no one can figure out why. He settled down when Trina came to visit, and was even more noticeably comforted when Marie and I arrived, but prior to that he was irritable and not really himself. It could be the teething and/or the drugs from the OR wearing off, but it seems to be more than that (though those theories are most likely contributing to the whole picture).

Josiah has been quite laboured in breathing and unable to maintain his sats. His ventilator support has been bumped up a little, but he's still not sat-ing great. His body language doesn't indicate that he is in distress, but it's a lot of work for him to breath right now and we can't figure it out. An x-ray of his lungs was taken and they are normal for him by all accounts, and had actually significantly improved through the day. We did a trach change (Marie and I, it was my second time) and the trach was clear and not the culprit. He doesn't have a fever really (just on the high-side of his normal) and he is not 'gooberish' (no snot or anything to indicate a cold or virus).

So yeah, he's still a puzzle. The best theory going is that he has a 'plug' in his airway (a secretion glob that is lower than the trach and isn't coming up) and so the only thing we can do it wait for it come up. But this would be the first time he has ever had a plug. Normally his cough is quite strong and pushes the secretions out, but today his cough is noticeably subdued. It's also possible that he is in the early stages of a virus or cold, but nothing else in his body is saying that.

So go ahead and pray that he'll get better! If he just has a cold or something, that's fine and we'd be OK with that since it's better for him to get a cold while he's still in the hospital than at home. But we just want him to be safe, healthy, and happy.

Again, thanks for staying with us on the roller coaster known as Josiah's Journey. Never predictable, but ultimately rewarding.

With Gratitude
- Andrew, Marie & Josiah