Dear Friends and Family,
As promised, here is a post to give more details about our wonderful day yesterday when Amos was finally discharged from the Children’s Hospital of Orange County. By the time that wonderful moment finally arrived, Amos had been in CHOC for just short of eleven weeks. He was admitted late on Thursday, June 24th, and discharged yesterday, September 9th. It is hard to express what it was like to begin to realize that we were leaving and taking Amos with us.
BRIEF REFLECTIONS ON OUR HOSPITAL AND MEDICAL TEAM
There is so much to tell about CHOC. As terrifying and traumatic as our introduction to this hospital was, by the time we departed many weeks later we shed tears of sadness among our tears of joy. We had come to know and love so many of the very gifted and dedicated surgeons, doctors, nurses, therapists, case coordinators, CAs, RNs, transport guys, security guards, Starbucks workers, and many others – that it was actually hard to say goodbye in many ways. These people had been there through the whole experience, and many had an instrumental role (quite literally) in bringing about Amos’ current state of health and prognosis. CHOC is a special place that we will always remember for so many reasons.
There are a thousand moving parts in discharging a patient like Amos. Not only is his medical record a mile long already due to the recent events, and his plan of treatment intricate and ongoing (more on that soon), but he also requires a fair bit of medical equipment for home use and lives in a different country where the healthcare system is completely different. But Amos’ team coordinated beautifully, and we are currently fairly well set up for his transition back to Cambridge and into the British National Health Service (NHS). To any of our CHOC friends who are reading: Thank you!
Here are a few pictures from Amos’ hospital room on the oncology floor. It was extremely well lived-in and decorated by the time we had to pack it all up!
SOME PICTURES FROM DISCHARGE DAY
Amos got off to quite a start on Wednesday morning, rising around 6:00 A.M., as usual, but getting a prompt and thorough bubble bath (with his bubble gun) before all the hubbub. He had the chance, after being in a dour mood the day before and declining the opportunity, to ride his beloved red bike one last time with his favorite Occupational Therapist (who kindly agreed to the early morning session). So off he went on his red trike at the crack of 8:00, and made it as far as the sky bridge that spans across La Veta Avenue to the parking garage, before he was caught in the act (by his nurse practitioner, Jody!) and shooed back to his room until official discharge later that day. Thankfully, Amos was having so much fun that he didn’t seem to mind his failed escape attempt.
Not too long afterwards, Kelli and I had to take our leave from Amos to attend a home CPR course specially geared towards children with trachs. Thankfully, just in the nick of time, Amos’ favorite Music Therapist came for a final session. Not only that, but she brought him the most epic instrument to date: a full-blown electronic drum kit, complete with real drum sticks!
Amos was in heaven and likely didn’t bother to notice we were gone for nearly an hour. A little while later, Amos also got a final session with his Physical and Speech Therapists. All of these ladies were such wonderful “play buddies” for Amos, and on top of that they were outstanding in their work. Amos made incredible progress each day and week, as we’ve been saying for so long. Here are some pictures (click to enlarge):
Before we could go, we had to pack up our entire room, which took quite some time and not a few boxes and wagons to haul things out to the car. But more than that, we had to have one last round with Amos’ nurses and doctors on the oncology floor. We have seen this wonderful group nearly every day for over a month, and have seen how carefully and consistently they have navigated Amos’ condition and prognosis. We are permanently grateful to them. How special it was to watch Amos grow to love them as well as he saw them each day. It is hard to describe what it’s like to say goodbye to friends like these, in circumstances like we’ve experienced.
Thank you, doctors, nurses, friends.
GETTING OUT OF CHOC AND GETTING BACK TO DANA POINT!
Sooner than we imagined, it was time to go. We packed up the car with all the goodies and supplies we’d accumulated and hit the road! It was an amazing feeling to walk out of there with our sweet little man, sit him into his long-neglected car seat, buckle him up, and pull out.
Amos seemed a bit apprehensive at first when we’d told him in the morning that we were going home, but when we sat him in the car it was obvious he was excited to get going. By that time it was about 3:00 P.M.
Of course, he was so exhausted from his very full day that he immediately fell asleep until we pulled up at Gigi and Grandpa’s house.
After waking up somewhat groggily, Amos was greeted by his joyful, tan, (now walking) little brother Lucas and his wonderful grandparents Gigi and Grandpa. Not only that, but there was a shiny new pedal-operated firetruck waiting for him when we arrived (the red bike had to be replaced somehow!). Thanks, Gigi and Grandpa!
It was a sweet reunion. I will let the remaining pictures narrate some of it for me (click to enlarge and read captions):
All in all, discharge went exceptionally well. Thank you all for praying! For those wondering, we are planning to return to Cambridge in the near future. I will leave specifics to a future post, as this one is very long already. In the meantime, please pray:
- That Amos would be admitted into outpatient therapy session at the CHOC Clinic starting next week, for the time remaining before we return to Cambridge.
- That our time at Gigi and Grandpa’s house would be one of continued rest and recovery for all of us, and progress in Amos’ health.
- That Amos would make tremendous strides in his throat and tongue movement, so that he can manage his “secretions” (saliva) and be able to have his trach out, even before we return to England.
- That Amos’ speech would continue to improve as well, and that we would improve in understanding him so that he feels encouraged in his ability to communicate well.
- For Amos to have patience as he is told to nap and sit often for periods of rest or feeding (which occurs through his tummy tube), particularly as he seems quite tired finally from the cumulative effects of radiation.
- That the logistics of our family’s move back to our home in England would continue work out smoothly.
- That, ultimately, God would see fit to permanently remove every cell of cancer from Amos’ body through the treatments he receives.
Thank you friends. We know that this journey is a long way from over, and we value your continued prayer for us as we will continue to provide updates. But this has been a tremendous step of progress for Amos, and we are so thankful.
Oh give thanks to the LORD; call upon his name; make known his deeds among the peoples! (Ps. 105:1)
With love in Christ,
Will, Kelli, Amos, and Luke