Gloria in Excelsis Deo: Day 78: A Feeling Yucky Day

Duplicated on our CaringBridge site for permanent record here.

February 3, 2021, written by Mama

78 days in the hospital: 63 in PICU, 15 in the Oncology ward

Wednesday was a yucky day in bed for little Thomas. He had started to become quiet on Tuesday afternoon, but Dad and I chalked it up to being fatigued as the day wore on. But come Wednesday morning, Thomas wouldn't eat, wouldn't talk, wouldn't play, wouldn't meet with any of his therapists.

What was the cause? Was it because he had begun eating solids the day before, and as modest as the food was, maybe his GI tract is just that sensitive? Was it because the team switched him to IV magnesium (to raise his mag levels) to enteral magnesium, which has a laxative effect? Was it because he is getting a bug? Was it because he was bleeding internally? Was it just random and nothing to worry about? When you're the Mama sitting next to him, you get to worry about it all day . . .

Thomas feeling puny lasted Tuesday afternoon for about exactly 24 hours. When Daddy walked in the door around Wednesday at 4:00, Thomas began talking for the first time all day (for me he'd only shake or nod his head), gave Daddy hugs (when he had declined Mama's requests to hug all day), and started taking interest in TV shows and activities for the rest of the evening. He told me I should go home and when I came back Thursday morning, he said, "I don't want to hug you." Sometimes he tells me, "I love Daddy better than I love you," just so I'm real clear. This mom business is hard enough in regular life at home, and, yes, it's just harder when there is a critical illness going on.

Forearm Wound

One medical complication we have probably never written about is a wound on Thomas's forearm that he has had for more than two months now. On what we now finally know was November 25, the nurse noticed something and asked me if this was a birthmark on Thomas's arm. I told her it was a brand new wound and she said she had to remove his peripheral IV immediately, which she did. But then, after a standard-sized Band-Aid was placed on it, nothing more was done. The medication that infiltrated wasn't tracked down. Weeks and months went by. The Wound Care specialty team was consulted four times, I believe, and each person had "never seen anything like this" and each person had a different vision for how it should be treated, so the treatments kept changing. The wound at least doubled in size. All the while, Chris was voicing his serious concern, but I couldn't get my head to focus on that because Thomas was on the edge of death so many times.

This is the week we felt urgency that this wound had to be taken care of. Although I had asked numerous times for nurses to dig through the records and find mention of this wound, they never could find it. So Chris and I spent a few hours searching through all my medical notes (numerous types pages daily), with no luck, and then all our photos of Thomas since the beginning. On November 25, the photos showed the PIV, and on November 26, the photos showed a Band-Aid. We had our date! Now the nurse I asked was easily able to go into the records, confirm that the PIV was removed on November 25 at 4:06 p.m., and write down a list of all the medications he received by IV that day (although still not tell us what meds went into that line).

We won't post photos of his wound here, although we have photographed it many times. The wound is 3.5 x 4 cm of mostly necrotic skin layers that goes deeper than we'd like. It has been cultured and shows no infection to date. We asked Surgery to consult and they were pretty shocked (although Surgeons don't use words like shocked) that they had never been consulted on this before and had no idea the wound was there. Surgery immediately handed it off to Pediatric Plastic Surgery, with whom we've had two lengthy consultations now. Thomas will be being treated with Santyl topical and daily wet-to-dry bandages changes until next Tuesday Feb. 9 when he is scheduled in the OR for a debridement and skin graft while under general anesthesia.

Priestly Visit

In the late afternoon, a priest was allowed in to give Thomas a blessing of throats in honor of St. Blaise. I was able to make my Confession and both Thomas and I received Holy Communion. (Thomas received an emergency early First Holy Communion and Confirmation back in June.)

Birthday Celebration

In the evening, Chris and I swapped so I could celebrate my birthday with the children at home. They decorated, made me cards, gave me gifts, and baked me my requested low-sugar dessert. Our family is going to be switching our eating culture in order to fit in with Thomas's new eating guidelines . . . which honestly seem radical but are mainly a diabetic diet, which was basically a standard diet for all Americans until the 20th century. Our new goal will be 5 grams of sugar per serving of dessert, so last night we ate homemade peanut butter-chocolate chip cookies that fit that limitation. I was quite happy with them!

I had gotten exceedingly little sleep three nights in a row due to emergency CT scans and Thomas's wakings, so I stayed home to try to sleep better and instead now enjoyed insomnia in a new location.