Aaron is doing much, much better now that we are 17 days into antibiotics and while he technically is supposed to be done with his second course today his temp is still running very warm every day. It’s a bit perplexing as his cough is pretty much back to baseline, and he is acting like himself, but he is consistently hitting 99.8-100.2 for large portions of each day. He also has periods of normal temps, though fewer hours than the higher ones. Technically he isn’t feverish, though he’s pretty darn close and he has hit the fever mark a couple of times over the weekend. It’s hard to know what to think, but thankfully he has his appointment with his ENT tomorrow so they will be able to check his lungs out and make sure he’s in a good place.

We appreciate prayers for wisdom at this appointment as we talk about where he is at and what our plan is going forward. Of particular note is the discussion about re-scoping him which requires sedation. On my last post I mentioned that we would likely not be doing that, but since then both his sleep doctor (his sleep study came back with good results and no worsening of his sleep apnea! Yay!) and his swallow/feeding therapist independently asked if we were considering re-scoping him, which obviously made us re-consider our initial decision. Also, I went to schedule his chest CT and learned that to do it un-sedated he will need to exhale for 10 sec and then hold for a few seconds which he is not capable of so that procedure will now have to be under anesthesia. This changes the discussion tomorrow with his ENT where I will get his take on the likelihood of gaining anything from a repeat scope at this point. Your prayers are definitely appreciated that God will guide this conversation and we will have a clear understanding if it’s worth putting him through this.

In preparation for this appointment I sat and counted out the number of serious croup episodes and how many doses of steroids given both last year and this to compare. While they are fairly similar, it has decreased by a few and the number of ER visits/911 calls/hospital admits are in half so that is encouraging!

 I always feel a bit on edge for these “bigger” appointments because I know that a lot is riding on my ability to clearly and concisely quantify how Aaron is doing to best guide our decisions for a care plan for him. I have tended to default to my clinician hat, because I can more easily tuck away my emotions and talk shop/data. What I have learned over the years of medical parenting is that the raw, honest medical parenting hat is needed in that room too. If all they see is the calm, collected clinical me, they don’t have an accurate view of what our family is going through. No, we didn’t end up in the ER in Port Townsend…but we had hours upon hours of guts clenched tight from worry, elevated heart rates and severe sleep deprivation for 6 days in order to pull that off. And to be perfectly honest the same exact scenario last year would have landed us in the ER at least once because over the years we’ve honed our skill, trained our ears to hear exactly what type of breathing he is having at any given moment, what to do to calm things even if it’s just a touch to keep us on the home side of that knife edge vs. the ER/hospital side. It really, really takes its toll…and that honesty has to be part of the discussion. It is hard to make clinical mom step aside for the raw, honest medical mom whose whole family has endured so much trauma watching Aaron fight to breathe for hours at a time. Balance and clear, honest communication is critical to give them the whole picture. It’s not easy to achieve.

Please pray for:

1. Praise for stable sleep apnea!

2. Prayers for treating his pneumonia and if it’s still percolating in there that it won’t be missed

3. Clear communication with Aaron’s team and much wisdom for all the decisions coming up.