So many of you are following and praying that I (Art) want to give an update before getting some sleep. Last night was somewhat of a contradiction: (1) Josiah actually slept more than he has the past few nights vs. (2) his retracting while sleeping continues to worsen, so he woke up exhausted this morning simply because he had to work so hard to breathe. His doctors continue to be more concerned and are trying to control the symptoms while figuring out exactly what is going on. They are unsure why there is such a large discrepancy between Josiah during the day (no need for monitors, breathes well, etc.) and Josiah and night (who struggles so mightily). Certainly the fact that his airway/muscles relax and "go to mush" when he rests is contributing, but they're wondering if there's more than that. However, in a sense this discrepancy is a good sign, because if his airway were collapsing it's likely he'd be struggling all of the time.
Many of you know his surgeon prescribed 1 round of steroids yesterday morning to "speed up" the shrinking of the nodules in his airway in order to determine if they're the cause of his issues at night. Steroids prevent inflammation, which on the one hand is good; however, healing involves some inflammation, and they prefer not to use steroids because they don't want to slow down the healing of the grafts and the mucosa which covers them. At 1:45AM this morning, the chief resident made the decision to try another round of steroids in light of Josiah's increased breathing struggles. Josiah also took two doses of Adovan (sp?) to help him relax, and twice had to be woken from a deep sleep to receive breathing treatments (he hates these) as the doctors/nurses tried to find ways to help him out.
At 6 AM this morning the ENT team met and decided to do a bedside scope (the camera down his nose procedure with Josiah awake...yes, he hates it, as some of you probably remember from his previous trips to Albuquerque and Cincinnati). There is a good bit of adema (swelling) and the vocal cords are moving somewhat, but they didn't find a clear answer for the issues he's having at night.
They will watch him closely today, although we expect he'll have another great day as long as he's awake. In terms of what could be next: The doctors do not want to put a tube back in his airway if at all possible. There are several other things they can try before we reach that point, but most of them require Josiah going back to the PICU. We'll monitor him closely today and, if his struggles begin again this evening, he will likely be moved back to PICU. In addition, they are considering moving up his next bronch (originally scheduled for Wed., 12/9) so they can try to better figure out what's going on.
Although better sleep for Josiah last night, he continues to get more worn out overall as the breathing struggles accumulate. Thankfully, Shelly got pretty good sleep last night, but we are concerned (trying not to be worried). As each of you parents knows, it's difficult to see one of your children struggle. After his 2nd breathing treatment last night, Josiah looked at me with tears in his eyes and said, "But Daddy, we already did that TWO times tonight" and "Are we going to have to do that EVERY night?" Then, as they prepared to do the bedside scope, he tried to be brave but cried and said "Please don't do this." I know these things need to happen and are best for him, but still it is hard because it is hard for him.
God is good, even in hard times. When I returned to our room at RMH today, I looked at today's note provided by a group of our friends. It's from the Sefziks, family friends who moved to Seattle several months back. One passage stood out in particular in the portion of Psalm 121 they included: "Your Protector will not slumber. Indeed, the Protector of Israel does not slumber or sleep. The Lord protects you; the Lord is a shelter right by your side." Whether we rest or are awake, He watches us more carefully and with greater care than the medical staff who closely monitored Josiah last night, and His love for this boy is even greater than our own (as hard as that is to imagine). As you pray for Josiah today, please ask God to help us remember this truth, even in the hard times...and may you remember it in your hard times as well.