Duplicated on our CaringBridge site for permanent record here.
March 26, 2021, written by Mama
129 days in the hospital
- 63 in PICU
- 28 in the Oncology ward
- 15 at In-Patient Rehab, and
- 23 back in the Oncology ward.
*** Special Note to any of our PICU nurse and doctor friends who might be reading this! * * *
Since we really don't know when we might be discharged, we finally arranged a visit to the PICU this afternoon to thank our caregivers and to let them see the boy whose life they saved. I was awkward and failed to say anything profound. Anyway, we would love for any of the PICU folks to stop by in these coming days to see Thomas while he is still in-patient. He asks for numerous of you by name!
* * * * *
Today I wondered what this sweet boy is going to do when we are home and he no longer gets to wake up and daily start doing his art projects within 15 minutes! Some of us grab a cup o' joe to wake up, but this boy points to his supplies and says, "Mama, let's do some art."
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| Day 2 of painting the wind chimes |
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| Copying the United States by eye |
His pain may, in fact, now be a thing of the past! At last night's six o'clock dose, we dropped down from big league Toradol IV to simple ibuprofen, which we gave at midnight and 6:00 a.m. Then at noon, we did not give any ibuprofen at all to see if his back still hurt . . . but he hasn't complained yet 24 hours later!
This morning, Thomas did art projects, he asked to sit on the couch for a while, then he requested to ride his tricycle (for the first time in some weeks!), and then we went to the play room to make sun catchers.
After a rest to catch his breath, PT came by and played fishing with him.
Back at home, Daddy installed a wheelchair ramp and then gave Thomas a tour over video call. Thomas was pleased and remarked, "Oh! So that's how I'll get into the house!"
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| David trying out the ramp |
Musings on What to Say
It has been a difficult thing to discern how much to talk with Thomas about going home and how much to keep quiet. It has been brutal on my adult's heart to have at least three discharge dates come and go without our going home, and I have wanted to protect Thomas from those bitter disappointments. However, that choice got taken away when a staff member said in front of Thomas, "If such-and-such happens, Thomas will be discharged tomorrow, and if such-and-such happens, then he will have to stay." Immediately, Thomas began talking to me about details of home that were very important to him but would never have occurred to me to matter. For example, he wanted to know what I would serve for breakfast the first morning. I didn't know what groceries would be in the house, I wasn't sure, but Thomas kept asking until I realized it mattered a lot to him. He wanted to talk through options of where he might sleep, what toy he might play with very first.
One comment that brought me to tears was when he talked aloud to me his thoughts . . . "I can't ride my two-wheeler right now . . . but I can ride my tricycle. So, when I'm riding outside in the cul-de-sac and I want you to carry me back inside, how will I call to you inside so you hear me? Hhhhhmmm. Maybe you can be sure to send John or Mary or Margaret or Joe outside with me."
Well, one can imagine that I got all teary at our five-year-old still thinking that back home, like when he left for the hospital back in November, he still has his independence to play outside in the street without his parents. Or his mistaken notion that in the immobile, deconditioned state he is in right now that a fellow sibling would be sufficient supervision out in the street while I'm indoors! I wiped away my tears and smiled cheerfully and said, "You know what, honey? For right now, Mama or Daddy will always go outside with you to play." Thomas approved of that idea.
I spoke with the oncology psychologist about things Thomas might face, challenging or wonderful, back at home. I wanted to know how I might help, and also ways I might do harm to his psychology and emotions. I'm opening conversation with him and asking what he thinks, feels, hopes, and worries about "when we get to go home, whenever that is." I'm also broaching some specific topics to get his mind thinking and invite him to participate, like how he might get in and out of the home (that ramp), how he might ride in the car (we will lift him in and out), how Thomas will get up and down the home stairs (he thought we'd install a really big slide!, but I told him we adults would carry him), and we brainstormed some bathroom accessibility issues. I'm trying to balance being inviting without being too "heavy" for a five-year-old.
It is also on my mind that Thomas might have some hidden issues that will present only later. For example, I'm reading a fascinating book entitled, You Can Stop Humming Now: A Doctor's Stories of Life, Death, and In Between by Daniela Lamas, M.D. She is a critical care doctor (an Attending in an adult ICU) and discusses many philosophical issues of medicine. One chapter is on Post Traumatic Stress Disorder experienced by those who experienced delirium during long-term ICU stays, a subject really only beginning to be explored in the last ten years. These patients who suffered ICU delirium laid down those memories as if they really happened, so they can experience PTSD just like a soldier home from traumatic battle. Meanwhile, their medical teams and families often think the patient should just be overjoyed and full of gratitude for having survived a critical illness, when instead the patient may be suffering horrific nightmares, flashbacks, and triggers. Reading of various patients' experience in this book made me ponder about Thomas who certainly experienced more than a month of deep sedation (during which who knows what he was perceiving or experiencing) and then many weeks of ICU delirium, during which I know minimally he was hallucinating, including about scary things like bugs all over the walls.
Also, I've had the oncology team let me know that the incidence of attention problems is much higher among children who received chemotherapy treatment and then I read in this book that those who survived deep sedation in ICU also have increased memory, concentration, and attention difficulties. There is so much for us to watch for and be aware of now.
No one gets a "practice run" for getting their kid through intense medical trauma, the likes of which most of us will never experience. Chris and I so deeply want to support Thomas in every way he needs. No pressure or anything.
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