Duplicated on our CaringBridge site for permanent record here.
February 16, 2021, written by Mama
91 days in the hospital: 63 in PICU, 28 in the Oncology ward, first day in In-Patient Rehab!
The day fought for, prayed for, and longed for finally arrived. Switching departments within a hospital means a lot of hurry-up-and-waiting. Fun fact: Here in North Carolina, bureaucratic laws about health care institutions require that this In-Patient Rehab floor be a "hospital within a hospital." Thomas was fully discharged from Levine's Children's Hospital and is now a patient at the rehab hospital.
I spent all week ferrying home bags of belongings to lighten our load, yet we still had even more belongings to transfer this time than when we transferred from PICU to Heme-Onc. With a child who is awake, I need a lot of toys, arts and crafts, and books to entertain him! My hope is that now that his time will be highly structured in Rehab, I can send home a lot of these items because he simply won't need as much entertaining.
We were supposed to go downstairs at 1:30, but, of course, there was the anticipated glitch with paperwork, so we had the kids waiting on video call for an entire hour before we start walking. Meanwhile, they made goofy faces at Thomas until he truly began laughing, which was my first time getting to witness it.
There's that kid I recognize! Our parents' hearts rejoice to see a sparkle in his eye again, just like any five-year-old boy should have.
During the day, four of our beloved PICU nurses showed up to wish us well: J---, K----, C---, and another J----. I feel like now I understand for the first time men who were on the front lines in war: those times were a living hell, but they cherish their bonds with their fellow soldiers, the only people who understand what battling in the trenches was like. There is so much darkness I've not shared on CaringBridge from those times, including the photos I took almost every morning of Thomas's unconscious, naked body so covered in tubes and wires that they couldn't even fit a diaper or gown on him. But the PICU nurses know.
I am experiencing some pointed "survivor's guilt" tonight, amidst and because of an amazingly joy-filled day. Thomas lived when it was very reasonable to think he would not. In fact, when one of the PICU nurses who visited today heard "there is news about Thomas," she felt her stomach drop because maybe Thomas hadn't survived after all. (The news was that he was moving to Rehab.) There are many wonderful parents of perfect little souls who were given The Box containing the personal effects of their child who died of cancer, instead of being given a party for their child surviving. I don't deserve to be the mother of the living and they don't deserve to be the mother of the dead. I'm going to spend a long time trying to make sense of God's providential will and I will probably spend my lifetime trying now to merit that our child survived.
A bigger crowd than I anticipated joined us for Thomas ringing the bell celebrating the end of his cancer treatment! The siblings made a long congratulations sign for Thomas and the Heme-Onc team had made a poster board sign for him; Daddy bought helium balloons; and sister Mary baked low-sugar chocolate chip cookies so he could enjoy a sweet treat when settled in his new room.
Our family invites you with great joy and gratitude to watch this one-minute video of Thomas ringing the bell! I wish you could see the ear-to-ear grins on our faces and tears in our eyes obscured by these masks.
Due to COVID restrictions, none of our children were allowed to join us: we had them join us via live video call and then we put them in the picture using the iPad below. Improvise, adapt, and overcome!
Our new room on the Rehabilitation floor is enormous: I counted it off at 22' by 15'. It's like a ballroom in here to me! The view is beautiful overlooking the round-about in front of the hospital and the creek.
We were also shown our new schedule. Each afternoon, a nurse will come in with little Velcro labels and put up Thomas's schedule for the subsequent day, showing three to four hours of therapy and which therapist will be doing what. I think the routine and order will be so good for Thomas. One wrinkle we all discovered only upon arriving is that we need to build time for eating into the schedule. Thomas has to eat at least six times per day, and eating each small meal takes about 30 minutes because of his new anatomy. Between the team and us parents, we plan to get it figured out.
Thomas already underwent his Physical Therapy evaluation this afternoon. I've never seen him sit upright by himself so long: I'm sure it exceeded half an hour and it only ended because the gymnasium had to close for the night! Also, the therapist held him in a standing position in which she was doing perhaps 90% of the work, "but not 100% of the work!"
He will finish being evaluated tomorrow, then the Rehab team will meet on Thursday to set his discharge date. The date may more one way or another, but it will reflect how long the team thinks it will take Thomas to reach his goals.
We have unpacked, we enjoyed a family dinner in our new room, Chris set up our new altar and blessed the room with holy water, and I've sent three more large bags of supplies home with Chris. Also, after three months here, I've learned that one can call the night ahead of time to schedule breakfast delivery the next day, as early as 7:00 a.m., which is now going to be necessary because therapies begin at eight o'clock sharp!
Lent is beginning tomorrow with Ash Wednesday, but I feel much dissonance because our first full day in Rehab tomorrow feels like the greatest of dawning hope. I look at the coming weeks as full of joy, celebrations of accomplishments, and resurrection--not the somber quiet of Lent!
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