Day 128: The Sparkle Is Back

Duplicated on our CaringBridge site for permanent record here.

The Feast of the Annunciation, March 25, 2021, written by Mama

128 days in the hospital: 63 in PICU, 28 in the Oncology ward, 15 at In-Patient Rehab, and 22 back in the Oncology ward.

Today was one that brought us much joy!

Chris spent the night last night and reported that Thomas's back pain was covered by medication all night (meaning, no breakthrough pain). I arrived in the morning when Thomas had already eaten breakfast, been sitting up doing art for an hour, and was in the midst of a Physical Therapy session!

We had a great video call with Pop-Pops and Uncle Mike who were enjoying breakfast at IHOP.

During Thomas's afternoon break off all his lines, he requested to go for a walk around the hospital, his first time outside the room in at least a week.

The weather was, at that time, really lovely--overcast and 75--so we sat outside. (Now later back in our room, it was exhilarating and a little fearful to watch out of our huge window on the 11th floor as a black cloud came racing toward us, engulfed the hospital, and released a blinding white deluge of rain with lightening flashes uncomfortably close while the weather channel warned that winds were 45+ mph with a "strong tornado watch.")

We noodled our way over to the cafeteria so Thomas could choose some food for himself. Thomas even wheeled his own wheelchair himself, something I don't think I've seen him do since three weeks ago on the Rehab floor. He has so few choices here and it was heartwarming for me to allow him to choose various foods. He carefully carried his prized Lunchables all the way back to our room instead of letting me put it in our bag of food.

Today Thomas has had a sparkle to his personality I can't remember seeing. He hasn't just smiled brightly or laughed once or twice, but it has been going on all day. I have heard him tell jokes repeatedly and initiate playing peek-a-boo with me! My favorite was when I was reading silently on the couch and glanced up to see him spying on me with a spyglass made out of his hand. This is a "Mama joke" because I spy on my kids and then say "I saw you first!" which is totally dumb, but aren't all "family jokes" dumb and loving and familiar?

"I saw you first!"

With Thomas temporarily on no lines whatsoever, I climbed into bed with him and we had the best snuggle time talking quietly about what Thomas thinks and feels about when we finally go home, whenever that is.

Medical Updates

Our boy is C. Diff negative, so our room is off of the enteric precaution we've been under for two days. Yay!

After several days of oxygen in the low 90s, Thomas seems to be back to 100% as of last overnight.

Thomas is presumed to have a fungal infection because the fungal culture from his surgical drain finally grew fungus. Since fungus "takes forever! to grow" and Thomas is at high risk of a fungal infection because he has been on broad spectrum antibiotics for four months, he is being treated for it while they wait to see if serum fungal cultures grow over the next couple of weeks. Thomas has been having fevers Monday through today (Thursday), which might simply be normal post-operative fevers or might be because of a fungal infection.

Toradol may only be taken for five days anyway, plus it is very hard on the kidneys, so tonight we are switching to regular ibuprofen to see if Thomas's pain is low enough to be covered by an OTC medication.

Today was Thomas's first full day eating solid foods (again) and he did amazingly well. Even though he is receiving 100% of his calories from TPN plus he has begun low-rate J tube feedings, he still was hungry for three meals:

• Breakfast: 1/4 pancake, 3 bites sausage, 3 bites potatoes, 10 bites cereal and milk
• Lunch: 80% PBJ plus one PB-cheese cracker
• Dinner: 6 Ritz crackers, 6 Lunchables ham "circles," and 4 large strawberries

While back in Rehab when we were given a planned discharge date of March 6, I received training on Thomas's J tube feedings. Now that we know he will go home on TPN, which is a much bigger deal, I have requested my day nurses start training me. If I did not take this initiative, what would have happened is that I would have received a single 15-minute training session on TPN from Atrium Home Health about 24 hours before discharge. TPN is a big deal because it goes right into a central line to the heart, so doing things in a non-sterile way can lead to a deadly serious infection. I want to be comfortable when we go home instead of having shaky hands and heart palpitations, so I've asked the nurses to start talking me through the procedure twice daily. They did me one better and said I can do it with my own hands each time with their supervision, so that training began today. It took courage for me when the nurse instructed me to "check for blood flow," as that means pulling back on the syringe attached to Thomas's central line such that I'm pulling blood straight out of my little boy's heart. I did it though because that is now going to be my duty twice daily!

Perhaps the most true thing said to us by the doctors way early in PICU and every doctor since is that Thomas would experience "two steps forward, one step back" throughout his journey. I will try to allow myself full joy for a day like today, even though I know there will probably be more bumps.