Dear friends and family,
A lot has happened in the past few days, so much so that we’ve barely kept up with ourselves much less with you, our prayer family. Here is a quick overview of recent events:
- Amos’ blood counts recovered by Thursday and he was clear from infections. It was wonderful news and we were so glad to see him feeling much better after the prior few days of tough going. He’s an amazing little man and tougher than we imagine! He also received his second sleep study to determine whether he truly is having spells of apnea during deep sleep, and the test showed that he was. That means he is using the ventilator at night as a safety precaution.
- We were allowed to discharge Thursday night and as soon as Amos heard the news he perked up remarkably and started chattering away more than he had in a week.
- Lucas got sick with some kind of infection around Wednesday, maybe from visiting Amos at CHOC (?). He has been vomiting and unwell for several days now. Because of that, he has been “quarantined” at Grandpa and Gigi’s house in Dana Point so he doesn’t share with Kelli, me, or especially Amos. He is doing well overall, but whatever he has is lingering and so he’ll go see a doctor today.
- Thursday night and Friday were lovely days at home with the two of us and Amos. He really enjoyed being out of the hospital, playing with his stuffed friends, watching the Jesus Storybook Bible DVD, and resting. What a nice treat for us all!
- Around midnight last night (Friday) Amos had a fever that required us to call his medical team, and ultimately sent us into CHOC in the middle of the night. It was the last thing in the world we wanted to do, but you cannot be too careful in his situation, so in we went. Amos had his port line put back in and the doctors started drawing all their “fever hunting tests.”
- Amos is still at CHOC – upstairs in the PICU due to the ventilator (a hospital policy) – and thus far his tests have come back negative for infections, which is good. His blood counts are still up where they should be, and this morning oncology said he should be able to come home tomorrow barring further fevers.
- The pulmonology team now believes the second sleep test may not be accurate after all (like the first), and that in fact Amos may not need the ventilator at all. He will sleep tonight without it to see what happens.
- That Lucas recovers quickly (and Gigi, who caught it from Luke), and that he does not need to stay away from home for much longer.
- That Amos’ tests will all show negative for any infections, and that he can come home again tomorrow until his next chemo round on the 10th.
- That Amos will be able to sleep through the night tonight without any ventilation or oxygen intervention, to show us all that he does not need the vent (and therefore can be on the oncology floor during chemo rounds, rather than PICU).
- That Kelli and I would persevere, and that Amos’ stamina and spirit would remain up despite these intermittent challenges.
Your way, O God, is holy. What god is great like our God? You are the God who works wonders; you have made known your might among the peoples. (Ps. 77:13-14)
Love in Christ,
Will, Kelli, Amos, and Lukeybear