Day 68: Many Fun Milestones

Duplicated on our CaringBridge site for permanent record here.

January 24, 2021, written by Mama

68 days in the hospital: 63 in PICU, 5 in the Oncology ward

Only five days into our stay on the 11th floor and the sweet Oncology nurses are remarking at how smart Thomas is. His personality remains very muted, like he is a little boy on 10% "expression," but his intelligent little self shines through anyway!

This morning when a nurse was here taking his vitals, I took that moment of a five-minute babysitter to go get my cup of coffee in the parents' lounge. When I came back, the nurse handed me this note and said, "Thomas informed me, 'You should write down all my numbers. Mama will want to know them.'" Just how long this five-year-old has been silently watching me as I grilled nurses for months on every lab number remains a mystery, but he's right, I want all the numbers!

(Speaking of numbers, Thomas's monitor shows only two numbers now on a big black screen: his oxygenation level and his pulse. Even the little electrical stickers have been removed from his chest. ("We don't need those anymore and they just get in the way.") They check his temperature and blood pressure every four hours only. Blood labs are done only twice weekly (not four times daily). I cannot yet reconcile myself with the fact that Thomas must be well enough that we do not need to keep such a close eye.)

Then later, Thomas corrected a nurse who had forgotten he needed to wear his mask because she was doing a sterile procedure. A "shortcut" way for a layperson to know that he needs to put on a mask is if he sees the nurse donning sterile gloves (which look different than standard gloves). The nurse was changing caps on Thomas's central line (which is an infection risk) and Thomas spoke up, "Excuse me, I need you to put my mask on." 

The staff love, love, loves him wherever he goes.

We had a day full of little milestones!

Mama did some OT with Thomas, helping him sit up on his own and having him do a puzzle, asking him to use his left and right hands to cross midline.

Then a certain young man inquired when he could wear an outfit again. After telling him I did not think that the time was right, I asked the nurse (just to back up my negative), yet she gave an enthusiastic thumbs up. "If he wants to wear clothes, he gets to wear clothes!" Our little boy can't physically smile too big yet, but that is a Big Grin as he shows off his penguin pajamas! (Milestone!)

Then Daddy brought him his very own brush, and several times today he brushed his own hair, just like a big boy. (Milestone!)

A little medical bit of info we inquired about at Rounds today: Thomas has a "moon face" right now (as the side effect is called), as well as some hirsutism (hair growth on parts of the body normally without hair): he has sideburns down to his jaw, and extra hair on his forehead and back. These are side effects of the hydrocortisone he has been on for two months to help compensate for his loss of adrenal gland. While he is currently slowly weaning down from the hydrocortisone under the supervision of Endocrinology, the doctors suspect these two side effects will disappear only months after being entirely weaned from the steroid. That's okay, we think Tom is pretty cute regardless!

Another milestone: Daddy spent the whole daytime with Thomas while I spent my first daytime at home. Heretofore, my visits home were either around 5:00ish for dinner and bedtime, or I'd show up at 9:00ish after people were asleep just to spend the night and depart first thing. Today I was home for six daytime hours.

Yet one more milestone: On the way home, I walked into a grocery store to buy shampoo. My husband and I think this might actually be my first time shopping in a store in person since last March (almost ten months). It is astonishing for me to think about. How am I so sheltered, so ossified? When COVID hit the news last March and lockdowns began, nobody knew what on earth to think. I remember the last time I shopped, it was at a CVS in March and I was both really scared of this mysterious disease and defiant, like I was still going to shop anyway! After that, we got scared for a while and designated Chris as our family shopper when something had to be done in person. (Remember, this was when crazy commercials were coming out of Europe about how everyone should wipe down every single grocery item with bleach before bringing it into the house, and maybe leave the daily mail sitting for a few days before bringing it in so any germs could die.) I'd already generally used online shopping for a decade, so I just continued with that while no longer running personal errands. Then our COVID concern started to lesson right when Thomas was diagnosed in June, so I ended up keeping myself and the littlest three boys home from everything since then to avoid any illnesses coming into the house. As I said for months, "The only place I ever go is the hospital." And then here I've been in said hospital for more than two months straight. So that, folks, is how you go nearly 10 months without ever stepping foot into a store. The experience shopping today was emotionally surreal and not in a good way.

Milestones don't stop there: I went on my first neighborhood walk in two months! While in the hospital, I've walked once for 30 minutes on the rooftop garden and walked once for 15 minutes along the hospital creek: that's it! One can kinda tell by looking at me. Sigh. Anyway, we walked a mile in the lovely weather. (Why aren't I skinny yet?)

I wish I could say that being home during the daytime was wonderful and relaxed, but I think only fellow parents traumatized by extended PICU stays (and maybe military parents) would understand. Walking back into the normal home where I don't fit in is so hard, it's so panic-inducing, so inspiring of Crazy Time Thoughts. I'm so ill-equipped to handle any of the normal goings-on in a home right now. 

Milestone: I cooked an actual dinner start to finish for my family. First time in more than two months.

I came back to the hospital around 6:00 to a boy who had a good father-son day. I gave Thomas the red-tinted telescope made for him by his brother Joseph (8) . . .

. . . and the pair of slippers sewn for him, as well as the sleeping bag sewn for Sloth by Margaret (9).

I also gave him a new toothbrush that Speech Therapy had asked me to buy so that Thomas can start learning how to brush his own teeth again. (Milestone!)

Weekends are very quiet in the hospital, when there is lower staffing, and all the non-essential therapists are not here. Tomorrow I can expect the string of visiting doctors and the four daily therapy visits again.

Specific prayer request: It is possible Thomas could have his Swallow Study maybe even tomorrow, and certainly within days. Please pray that it occurs as soon as possible and that he passes so that our precious and hungry boy can put food in his mouth for the first time since November 16 (as he fasted 24 hours before his surgery date).