Sunday, February 21, 2021

Day 96: Sunday Visitors

Duplicated on our CaringBridge site for permanent record here.

February 21, 2021, written by Mama

96 days in the hospital: 63 in PICU, 28 in the Oncology ward, 5 at In-Patient Rehab!


If weekends in Rehab are quiet, Sundays are whisper quiet.

I stayed home for more than 24 hours, by far-far the longest I've been away yet. Chris and Thomas had a good time together. I reflect back on the earliest days when Thomas was conscious again but emotionally labile: everything made him burst into tears. He wept for Mama if I ever (rarely) left and he wept for Daddy when he was gone. He also cried at every fleeting thought that might be poignant. Now little Thomas is calm and I rarely see him cry: the last time was last weekend when Thomas knew that his grandfather was in town, staying at our house, visiting the family, but the hospital would not let Pop-Pops come see Tom. At that news, Thomas wept for his grandfather, which is a good, healthy response. Suffice to say, Thomas is comfortable now with our swapping out as parents . . . and it only took us three months to get here.


At home I tried my hand for the first time making 100% whole wheat waffles with homemade blueberry sauce and serving them with turkey bacon. (Little tip I just learned: most commercial turkey bacons are no different nutritionally than pork bacon because the manufacturers just add back in all the bad stuff to make turkey bacon taste good. One has to compare brands and buy one that is actually significantly lower in fat if that is the health goal which, for Thomas, it is.)

I was pleased that the children complimented the waffles enthusiastically and, whether that was genuine or forced politeness, I am happy with either one. Also, there was no leftover turkey bacon, which surprised and relieved me. I brought waffles back to Thomas and he liked eating one (just plain!) so much.



Thomas and one parent or the other played various games together and watched some fun movies. We had not one but two special guests! Nurse R---- (a man) came by, as did Nurse C-----, who was the primary nurse who played a major role in saving Thomas's life on the night of December 4th when he nearly bled to death due to necrotic organs which were removed during emergency surgery. I feel great tenderness for C---- because of how she spotted the nervous-making symptoms Thomas was having, she acted so fast, and she led the entire team in stabilizing Thomas until he could get to the OR. Nurse R---- is one who took care of us often and is counted among a subset of PICU nurses who allowed my soul to relax as he took care of our son. R---- has a very kind, gentle demeanor.

Later in the evening, our beloved surgeon Dr. B---- made a spontaneous visit--because what else would a dedicated surgeon be doing on a Sunday night when he's not on service and could be home relaxing and enjoying the fruits of his labor? We had an illuminating, important conversation about some of Thomas's major digestive problems he's been suffering this last week and Dr. B--- has a strong idea about what's going on. We'll keep readers apprised if his theory pans out and then I'll tell the whole story about how Dr. B---- is brilliant yet again.

As I type this, I note that Thomas is asleep nearby and is sleeping on his side . . . without any pillow to support him. For the last week or so, I no longer have to prop him up with a dense Z-pillow behind his back, which he required for all those months because his body was like mush. It actually takes core strength to lie on your side. I've also noticed just in the last few days that Thomas is starting to shift his body around in bed. He still needs help to get just how he wants, but first he tries wiggling himself around . . . and it's been a long time since I've seen that.


Lastly, Chris made this handy dandy picture guide if any other pals find themselves driving nearby and want to wave hello like our friends the S---- family did.

Praise God from whom all blessings flow.

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