Tuesday Morning - A Josiah Update

It looks like I'm getting into a quasi-rhythm of posting every two days now. I think there are three reasons for that: from day to day, there seems to be less 'news' about Josiah (which isn't necessarily a bad thing, right?!), I'm busier now than before (not only taking more time to work in Abbotsford, but also Marie and I have been handling a lot of Josiah's care), and we're just plain tired.

I think I mentioned it in an earlier post, but in many ways I think I am (we) are more exhausted at this point in our journey because we are no longer just sitting idly by Josiah's side, but essentially trying to live out what care at home is going to be like. The assessing, the comforting, the suctioning, the oxygen, the humidity, the ties, the medicines, the food, the cleaning, the temperature and a like are all becoming a part of our daily rhythm with Josiah and it's wearying. Sure in the past Josiah was less stable and that stirred up other emotions and stresses, but then we would really only pat him, change his diaper, and check his temperature. We are certainly more engaged then we have ever been - and rightly so! we want to be there all the time! - and so we are more tired and I am certainly less likely to leave his side to put up a post!

Josiah has been doing pretty well over the last couple of days. The nurses are a little concerned that he might becoming nocturnal! A couple of nights ago he was awake the whole time for the evening shift nurse, so Marie and the nurses made a plan yesterday to keep Josiah stimulated as much as possible during the day. The lights were left on in his room the whole time, Marie played with him at specific points in the day, he was given a bath, and Josiah was even given the opportunity to try sitting! WooHoo! Yeah, one of primaries decided that Josiah's ulceration has healed enough so it isn't dangerous for Josiah to try sitting! Praise God for that! The ulceration does look really good, but it still has some more to go before it's completely healed up.

The infection in his abdomen incision is being treated, but I'm not sure if the doctors have seen any improvement yet. The big concern there is that it seems the skin is closing over on the outside, but on the inside the wound is still yucky. At one point they were considering taking out all the 'bad skin/flesh' and then re-stitching Josiah, but so far they haven't taken that route.

Josiah has really been demonstrating that he HATES not breathing - good for him, I say. I had mentioned before that he goes spastic when the RT's try to 'bag him' (maintain pressure and regulate his breathing for him). Josiah will also d-sat/brady when he doesn't get his secretions cleaned up in time. I don't blame him - he's trying to be breathe through a tube that's THREE MILLIMETERS for goodness sakes!! Usually he starts the shift (7 AM and PM) with an episode, but the nurses are catching on and so we hope those are a thing of the past. So, we're just learning to catch him early, because when he does flip out it is really hard on him and he sometimes takes a while to recover because he gets into a rough breathing pattern that doesn't allow him to relax or take the deep gentle breathes he needs. We're praying and hoping that Josiah will be able to fit a 3.5 mm trach by the time we go home, but the ENT's will only give him one if his trachea has grown to the point where a 3.5 mm trach won't come against the lining of trachea and irritate it.

So, that's the latest on our man. Thanks to Phil, Cindy, Alex & Kelly S. who came out Sunday to visit Marie and Josiah. Also Marie's dad is moving tomorrow to Calgary (her mom is already there) so please pray everything will go well there. It's going to be hard not having her parents around all the time; yet, I think the hardest to take is the realization that they are going to be in Calgary and it's going to be difficult for them to travel to see Josiah as often as we all would like.

In God's Graces.
- Andrew, Marie & Josiah