People have been saying we should expect setbacks along the way and here we are with just that. Please pray for Amos as he’s been readmitted to the Pediatric ICU floor here at CHOC. It’s been a very long 10 days in the hospital and just as we were on the verge of a healthy discharge, things unraveled and we’ve found ourselves back where we started in June – on the 6th floor.
The medium length story is that Amos was doing fine after his first round of chemo, which ended on Friday, but we remained inpatient at CHOC in order to complete a sleep study this past Tuesday night. The sleep study was meant to determine why Amos was having fluctuations in his oxygen levels at night, and it raised some concerns regarding apneas (absence of breathing) when he’s asleep. As a result, it raised the possibility new machines to assist Amos at night. There were many questions mixed into the sleep study results, many of which are still unclear, so the proverbial waters have been muddied and Amos’ care has definitely gotten more complicated.
But the good news is that because of the sleep apnea we decided to stay an extra night rather than go home yesterday. Last night we transferred upstairs to the PICU and Amos quickly got a fever and had a vomiting and de-saturation episode that would have been very, very frightening to manage had we been at home by ourselves. We are so very thankful to the Lord for once again intervening in our plans with something we found disappointing in the moment but ultimately was working out for our good. It’s amazing how your attitude can change so quickly – from grumbling to rejoicing in the Lord’s protection!
So now Amos’ team is on a “fever hunt”. He’s spiked three fevers and his Mickey button (the feeding tube to his stomach) is almost certainly infected. He has a variety of tests today to rule out all kinds of things and then we wait on blood, respiratory, and urine cultures to make sure all is well on those fronts too. Amos has been incredibly brave but he’s definitely not feeling well and he’s not enjoyed many aspects of this most recent ordeal. It is very difficult for us to see him struggling.
We feel tired, deflated, thankful, and discouraged all at once. The apnea issues are frustrating to run up against because it will require Amos to be in the PICU anytime we admit to the hospital rather than on the oncology floor where Amos has grown to know and love so many. The conditions of the sleep study, considering his current infection(s), seem inconclusive but we have to go with the conclusions we have until we reevaluate and Amos proves he’s able to support and sustain normal breathing patterns during sleep.
The infection is a concern as well. Amos’ blood counts are at their lowest right now due to the chemotherapy so he is especially vulnerable to little things turning into big things.
- For Amos to improve in these next 24 hours – for no more fevers and that all the tests would come back negative, pointing to the infected G-tube or something similar as the offending culprit in this scenario. A much easier easier fix than other things.
- For Amos to be able to come home soon and that we would all feel comfortable with the timing of this discharge. (And that we would be patient as it seems like discharge could happen in a few days or in a week or two. We can’t really know, and that’s a recurring theme that we should be used to by now but it’s still hard).
- For Amos’ sleep apnea to resolve quickly. There are so many practical complications that are arising because of this.
- For Amos’ courage and strength. That his spirits would regain buoyancy and that we would know how to encourage him, especially as we face his hair loss in the next few days, which could be very discouraging to him.
- For Amos to continue to progress in speech, feeding and swallowing, and physical therapy, which have gone fairly well this week, but left Amos pretty tired and grumpy considering he wasn’t feeling well otherwise.
Praise God for His very present care for Amos and our family. We know He is watching over us and over Amos.
“And the ransomed of the Lord shall return
and come to Zion with singing;
everlasting joy shall be upon their heads;
they shall obtain gladness and joy,
and sorrow and sighing shall flee away.”
Love in Christ,
Kelli, Will, Amos, and Luke