Tuesday Afternoon - A Josiah Update

Greetings Online Sojourners!

I figured I better write something here before I really run out of time.

So last thing I posted was that Josiah had spent a few days in BC Children's because of some unknown virus. That has totally cleared up, but life is anything but 'normal' or 'predictable'. In fact, I'm quite settled on the fact that Josiah will be predictably unpredictable for a while. Just part of being handsomely complex.

How about I start with the latest and then fill in any other tid bits that come to my mind? Last week Josiah had his regular follow-up appointments at BC Children's with neurology (seizures specifically) and respiratory/ICU. Our seizure doc is uncomfortable with the number of siezure meds Josiah is on (yay!) and so we're in the process of weaning him completely off Phenobarbital (an 11 week process at minimum), which we are really glad about because Phenobarb is just a nasty drug to have in your system long term. A number of parents have told us that taking their children off Phenobarb was the best thing for them, it just happens to be one of those 'go-to' drugs as it relates to seizures. The process will be slow because the body gets quite addicted to Phenobarb, and we can expect 'withdraw' seizures, but so far so good!

Josiah also showed an ear infection around the same time. We started ear drops that night, but the following morning he had unusual pimples/rash around his neck and we concerned that the infection had spread (we knew his ear infection was staph aureus). So we had to make a second trip to Vancouver and picked up some cream treatment. It was confirmed the following day that the rash was indeed staph aureus too, and unfortunately the cream didn't clear up the staph and it was noticeably worse today because it was actually MRSA, not just plain ol' staph. Josiah had picked up MRSA while at his stay in BC Children's (one of those unfortunate things about staying long term in any hospital) but this was the first time it was an actually infection (previously it has just been cultured on his skin with no dire effects).

Thankfully, though, for the moment we have avoided a stay at BC Children's. Our doctor has prescribed a different cream for Josiah that should clear up the MRSA, but if that doesn't work there are a couple of oral options before we have settle with an IV drip (which would mean a few days stay at Children's). The real complicating factor in this is that Josiah is allergic to one of the 'go-to' drugs for MRSA (sulfa, a common antibiotic used to treat many things) and that one of seizure meds (Tegretol) has a lot of negative drug interactions, limiting our available options. For example, the ear drops cleared up his ear infection really quickly, but the oral variety of the same med interacts with the Tegretol, which is one the many reasons we'll be getting rid of Tegretol after Josiah is weaned off Phenobarb.

So we pray, stick to the game plan, and wait for this cream treatment to work, praying that Josiah will heal up, that the infection won't spread, and that we can avoid another hospital stint.

In other things ... well, let's see. Josiah for really the first time yesterday used his teeth to 'gnaw' at his food. He really enjoyed eating his apple. We have a mesh feeding 'thing' that allows Josiah to chomp on solids but only the juices get into his mouth. LOVED IT. He was kicking so hard that he was pushing his chair back when he braced his foot on Marie's leg! And he didn't mind the ketchup and mustard that we allowed him to sample ... :)

Josiah last week started on a new formula which is geared towards children. Not soy but cow's milk without the lactose. And it's vanilla flavoured so it covers up the sodium we add and the soy that is mixed in (we do half-and-half infant and child formula to ease his transition and use up the old stuff we have in stock). We think this new formula is more filling because he isn't as hungry, but he could also be done his growth spurt which is totally fine.

Josiah had another physio appointment last week, and showed great progress. He also changed his sleeping position on his own for the first time (I don't know if I mentioned that in the last post).

We've had a more difficult week because we've been without night nurses for what will be 10 days straight (even nurses need to take holidays), but August is INCREDIBLE for coverage, including 8 days in a row when Marie and I get to sleep together! We'll almost feel normal after that week!

That's all that I can think of right now. Toodloo.
- Andrew, Marie & Josiah