Dear friends and family,
It is hard to believe that the Christmas season is almost halfway through. Time is flying, and in positive ways for Amos’ progress and recovery. As of our last post, Amos has finished with three out of four scheduled rounds of chemotherapy. He discharged a week ago from Round Three and we have been holding down the fort in Irvine since then.
Sadly, shortly after Amos got home last Friday evening Kelli and I realized that Luke was sick. So off he went to “quarantine” at Grandpa and Gigi’s house for a few nights. Thankfully it was just a cold and he recovered and was back with us by Wednesday. It’s not a risk we can take to keep Amos and Luke together if there is a cold (or worse) in the mix.
Amos has had a very good week, regardless, and is holding up very well even this far into chemo. He continues to wear his “red cap” over his tracheostomy (a term, like so many in the medical world, transliterated from Greek to make the stark somewhat more mysterious and elegant. “Tracheostomy” means “throat hole,” more or less). As we mentioned, the cap is essentially a plug to block off the trach opening (see picture below). After reducing the size of his trach and introducing this cap, Amos has done exceptionally well breathing without the extra airway that the trach otherwise provides. He wears the cap all day now instead of his purple Passy-Muir speaking valve like before. This switch is a crucial part of the process of doing away with the trach altogether (cumbersomely known as “decannulation”).
Amos has a few hurtles ahead before we can ring in the new year.
First, as I write this Amos and I are at CHOC getting him some red and white blood cell infusions. It is normal and consistent with previous rounds for him to need this a week after inpatient chemo. It takes a handful of hours, but we get to go home afterwards (late!). So long as he resists any infections or fevers, he won’t need to be admitted until his next full round of chemo in about ten days. We are up at CHOC a few times a week anyway, however, for blood checks, mini-chemo infusions, or therapy, however, so we don’t get too much time away! Thankfully, Amos sincerely loves it here so it’s “easy” to return so often for daytime errands.
The next major hurtle is an overnight sleep study. Amos has had two of these so far to make sure he is respiration and oxygenating sufficiently through the night. There have been many complications to these tests that I won’t rehearse here, but basically Amos will need to sleep the night with his red trach cap on, breathing safely and sufficiently without his spare airway. Doing that successfully is the criteria for removing his trach (besides a minor scope test to check the airway “plumbing”). This sleep test will take place on the 20th, and we will then stay inpatient for the fourth (and final!) round of chemo.
That is the other major hurdle before 2016 chimes in: Round Four. With it being the final installment, it will be toughest on Amos as the treatments are cumulative in some ways. As long as there are no delays or complications (like Round One), we will discharge on Christmas Eve.
- That Amos would resist fevers and infections in the next three to five days until his blood counts recover
- That Amos would clearly and easily pass his sleep test on the night of the 20th
- That Round Four would go smoothly, and that we would discharge on the 24th
- For our family to not just endure this Advent season, whether we are together or apart, but to grow in love for the Savior it heralds.
He comes to make His blessings flow far as the curse is found.
Love in Christ,
Will, Kelli, Amos and Luke