Day 67: Thomas Resumes his Art

Duplicated on our CaringBridge site for permanent record here.

January 23, 2021, written by Mama

67 days in the hospital: 63 in PICU, 4 in the Oncology ward

Meditation

Since the New Year, I have been struck by a meditation shared with me by a friend from the spiritual book she was reading:

"You think the whole of a new year is before you. It is not. Only this moment is yours. Make this moment holy, and each moment, one at a time as you receive it from God to live, and you will find that that is all it takes to become the saint God expects you to be, for sanctity consists in doing God’s will one moment at a time.

"New Year’s Resolution: I want to do what God asks of me NOW."

I feel I have failed this so many times in the last months when I was living moment to moment on a fine line very close between Thomas's life and Thomas's death: did I make those moments holy? Much of it is truly a blur to me, like trying to remember a nightmare one had and remembering only the worst flashes and moments. How many opportunities I had to do God's will in just one moment, yet I don't know how well I did that. I will try to do better.

Fullness of Time

Just when I think Thomas's care is already a full-time job, I come to more of a full understanding. Today I began learning how to use his J tube and Dad and I began realizing that Thomas's emotional and psychological care is requiring much more from us with every day. Just today, I came back to the hospital before 8:00 a.m, Chris expecting to depart soon after, but he stayed till early afternoon because Thomas's emotional distress needed two parents to manage. One day all of this hospital staff will be gone, our nanny will be gone, Chris will be back to full-time work . . . and it will be me doing Thomas's care.

Learning J Tube Management

Our daytime nurse realized it would be a great time for me to start managing Thomas's J tube. I am thrilled because it has been anxiety-producing to think of my going home while still very much a novice, so I'd like to do this work with nurse supervision for as many weeks as we are here. She taught me how to fill a new bag, set the settings on the pump, and how to put in all his medications, followed by a flush. The nurses are correct when they tell me that they will repeatedly instruct me to clamp the line before opening the cap, but it is still going to require making that mistake a few times and having formula spurt out on me before I learn the lesson!

Big Emotions and Thoughts

Thomas weaning off more and more medications means he is awake for more duration, more alert, more "with it." As much as I thought he was "awake!" at various earlier points, I can now look way back and see he was barely rising up out of the sea of sedation, poking up his head to take a breath, so to speak, but not nearly fully conscious. Now I'm watching him and wondering what it will be like as he comes off these medications over the following weeks or months. For example, he still has a flat affect almost all the time. He will smile (small) when we request it for a picture. I have seen him three times crack a smile spontaneously when his dad walked in the room and last night he smiled gently at the nurse making a joke, the very first glimpse of return of his sense of humor. Then today was a new milestone: He woke from his afternoon nap and gave me a spontaneous smile, slow like the dawn . . . the first for his Mama.

Thomas is experiencing grief and we are having to help him through it numerous times per day. Once when a new therapist came into the room, Thomas told me that he wanted to tell the therapist what was wrong and not for me to tell her. He explained so clearly, "One, I want to go home. Two, I am hungry and want to eat food in my mouth!"

At one point as he wept today, I leaned over him in bed, as I often do, and put my face squished right on his head and I cradled him. After a while of his weeping--as it lasts for many minutes--I stood up and he said, "No! Stay close to me! Just like that!" 

Often I try to give him words and use reason, and other times I just hold him and affirm his feelings. We talk about how he is getting stronger every day. He needs to be strong enough that it is safe to go home. Everyone here is helping him to get strong because we all want him to be able to go home.

Thomas is hungry now. I presumed that had to be psychological since he is getting precisely the right calories and nutrition that his body needs through TPN and formula. However, I asked the doctor and was told no, he really is hungry. The hunger is a healthy response to his GI tract being stimulated by the formula and it is real even though Thomas receives enough calories. This is a sorrowful truth since he may not yet eat food by mouth.

We are preparing Thomas for his swallow study. He understands that the doctors need him to take a test to make sure it is safe for him to swallow and afterward he will be allowed to try swallowing food. The surgeon mentioned first foods of applesauce and yogurt, to which Thomas said, "I want a sandwich!" We promised him that a sandwich would come in time.

Thomas, the Artist

Today Thomas got to be placed in his chair (a detail-oriented process that takes 15 minutes) to travel to the play room down the hall--available only for one child at a time, but we are thrilled it is available at all under COVID restrictions. Thomas asked to do some art and put his parents and the Child Life Art Therapist in awe of his fine motor skills returning like they are.

This mountain landscape was entirely his vision and execution.

I was curious if Thomas remembers how to write his name . . . and the answer is affirmative.

A smiling train . . .

Steps Along the Way To Going Home

• Step by step, wean down off of pain and sedation drugs (Methadone, Ativan, Clonidine). Depending on how long we are here, he might go home while still on Methadone (an oral version). If Thomas gets into the Rehab program, they will likely switch these IV medications to oral versions in order to make physically moving much easier.
• Get his chest tube removed (maybe within days). Make sure pleural effusions are really gone.
• Jan. 27: full abdominal ultrasound scheduled to look for pockets of fluid
• Have his swallow study and pass it (maybe early next week).
• Start trying to eat foods by mouth. Go through a long process with Speech Therapy to learn how to eat safely. Work closely with Nutrition to learn what his body can handle and what it needs nutritionally. This work will be ongoing for a long time, way beyond when we go home.
• Meanwhile, continue increasing his J tube feedings until they reach goal (around 50 mL/hour), while titrating down on his TPN nutrition. This may be achieved within this week.
• Continue 5x/weekly PT, OT, ST, along with frequent Child Life visits.
• Prayer request: Get Thomas into the In-Patient Rehab program, which will mean moving to the 4th floor. I do not know how physically strong Thomas needs to be to be released to home. We certainly want him to be sitting up, transferring, and walking independently, but we don't know what the minimum requirements are.
• Early February: MIBG and CT scan are scheduled for three months since last chemotherapy to see whether or not Thomas has gained the status of "No Evidence of Disease." Prayer request that he is N.E.D., especially since the oncologist has said that chemotherapy is not in his future.
• Throughout all of this, the entire nervous system of Thomas's reconstructed GI system has to learn to communicate together again. The biggest, most important nerves have been severed and things sewn back together. His GI tract has to learn how to move in a coordinated way and in the right direction and, in the meanwhile, when it does not, he will experience difficult symptoms like continual retching/emesis. He is on many medications currently to alleviate symptoms, but ultimately he needs (1) to wean off all the pain and sedation meds which affect motility, (2) speech therapy, and (3) time for his GI system to learn how to function again.