Day 92: First Full Day in Rehab

Duplicated on our CaringBridge site for permanent record here.

Ash Wednesday, February 17, 2021, written by Mama

92 days in the hospital: 63 in PICU, 28 in the Oncology ward, 1 at In-Patient Rehab!

We are enjoying the new view from our Rehab room: only four floors up, we can do better people-watching as well as see details of the creek.

God provided for us even in our hospital room: The hospital chaplain brought us ashes! Thomas and I also began the Holy Heroes Lenten Adventure workbook.

Thomas received a going-away gift from one of the nurses who used to take care of Thomas: a beautiful hat she knitted for him! Thomas receives so much genuine love here.

As the Rehab floor got Thomas's height and weight today, I very intentionally appreciated the inventors of TPN and G/J tube feedings. Thomas came into this hospital at 19.1 kg and three months later (two of which were solely on TPN), through heck and back, he is 18.7 kg, essentially the same. The tumor removed alone weighed 390 grams (nearly one pound) and surely having three organs and change removed weighed something noticeable . . . so it's almost like Thomas has gained a bit! I praise the scientific inventors of these methods of nutrition that buy time for patients to recover from acute illness without simply starving to death.

Thomas's first day at Rehab was as intense as had been predicted! We ordered our breakfast the night before so it would arrive at 7:00 a.m., allowing us to be ready for therapy at 8:00 (not that he ended up eating it, as he felt sick). After doing therapies for the next two and half hours, Thomas zonked out in moments when he was allowed back in his bed at 10:30.

In the afternoon, Thomas had two more therapy sessions as well. 

Getting Thomas's body strong is the therapists' job, but getting calories into Thomas's body is my job. I am heartened that yesterday in the face of Thomas's new goal of 900 calories by mouth, he consumed 893! Today was more challenging because, amidst all the therapy hours, I was navigating the fact that Tom was too nauseated to eat until mid-morning, then the kitchen took two whole hours to deliver lunch (by which time we were gone at therapy again), and two whole hours to deliver dinner (by which time it was 7:30 and my boy took two bites, then fell asleep); on top of it all, the same kitchen that delivers food also delivers his J tube formula and they never delivered it all day so the manager had to be wrangled with to get it here in the nick of time tonight. These glitches are a problem that has to be solved.

Only one day here and my time is busier than ever. 

Very time consuming is tracking and analyzing Thomas's "ins and outs." I am now writing out his food lists twice. I complete the therapists' form listing all foods consumed and at what time along with all Thomas's bowel movements by time as we try to figure out some digestive mysteries and a method for getting him continent again. This first list is for the therapy team and me. Then I write out a second list on the hospital dieticians' form that groups food by type and doesn't care about time. The dietician does not care if Thomas ate spelt pretzels with peanut butter at four different occasions throughout the day, she only cares the total amount of pretzels so she can calculate the calories.

Besides my new "part-time job" as a dietician, I'm also doing all Tom's body care, which is about as intense as that of a newborn around the clock except I'm maneuvering a 40-pound child who can't maneuver himself. Now I'm filling out a detailed care binder, starting to navigate insurance, home health care, and adaptive home products. The hospital has assigned me 21 health education videos to watch so far and at least a dozen medication information documents to read that have to be complete before discharge. I keep up with our laundry (which we create a lot of because of said newborn behavior above). I field phone calls from home with homeschool questions, schedule questions, discipline questions and also place the grocery orders online for the house.

Then each evening, I do set aside pleasurable one hour to write for CaringBridge because (1) it helps me tremendously to emotionally process and (2) it connects us with an international network of friends, loved ones, well-wishers, and prayer warriors.

I was inspired to watch how the therapists worked with Thomas on Day One and got him to do things he didn't think he could do. The therapists are very kind, but also clever and definitely know that ultimately their job is to get these kids functioning again. Some of this process will involve Mama being "too busy" to stay with our boy during all therapy sessions so that he does not have me as a safety net, or to run interference (read: coddle my boy). I'm sure I will have more to describe about therapy, but I'll observe for longer than one day to write it up!

And thus ends another day in which I will try to enjoy watching a little fun TV show and in which five minutes I will be asleep instead.