Day 37: Christmas Eve in the PICU

Duplicated from our CaringBridge site for permanent record here.

December 24, 2020, written by Mama

Kidneys Waking

On Christmas Eve at 1:00 a.m. or so, I awoke to the brightest lights of the room shining and the two nurses leaning closely over Thomas's bed. Bright lights at night in PICU are not good news, so I just about had a heart attack until the nurses looked up grinning and began exclaiming, "It's pee! It's pee!" Thomas had voided urine on his very own for the first time in five weeks . . . soaking the bedding so much that his urine couldn't be measured. The Resident and Attending both ran in the room and joyously declared it a "Christmas Eve Pee Miracle." Only 10 hours later, Thomas voided again, a whole 70 mL (they can weigh diapers here) . . . and then again in the evening! Thomas remains on continuous dialysis and the fact that he is creating urine and voiding on his own over the dialysis is joyous news. This may be the first sign that his kidneys are starting to wake up out of frank failure.

Central Line Infection

Unfortunately, my unadultered joy was short-lived because then the Resident whispered to the Nurse, "Has Mom been updated?" 

Thomas has had his lines cultured many times during his hospital stay and finally something grew: He has a central line infection in his port, which has a line going straight into his heart, from the gastrointestinal bacteria Enterococcus. In the middle of the night, he was immediately started on Cefepime and Vancomycin antibiotics. 

Because Vancomycin is particularly hard on the kidneys, after each dose he is given, the nurses wait a certain time and then do a blood draw to test the level of the medication in his blood stream. Then the (amazing) hospital pharmacist does calculations and might decrease the amount of antibiotic given in case it is building up too high in his system.

Our beloved surgeon Dr. B. came by at 6:30 a.m. ("I already came by once to visit you but you were still asleep. So I came back.") He might order a CT scan to check for an internal abscess being the source of the Enterococcus. However, he'd rather wait because he needs a CT scan later (a week or two) to look at the liver and looking now would be earlier than he wants. He will weigh his desire to look for an abscess now and the liver later because he doesn't want to expose Thomas to two more CT scans' worth of radiation.

 

Video of Thomas driving a matchbox truck

Video of Thomas driving a matchbox truck

Losing Things Right and Left

After being weaned down to room air successfully, Thomas had his supplemental oxygen entirely removed today. It is wonderful to see more of his face!

Also, he had his triple-lumen femoral line removed from his right thigh. It was an infection risk and they no longer absolutely need the generous access, so they are removing all infection risks they can.

Now that Thomas has been on Clonidine for 48 hours, they began weaning down his Precedex (sedative).

Becoming Active

Thomas had another visit from PT and he kept me on my toes for many hours today. He can now move his left hand so well, albeit like in slow motion, that he keeps trying to remove his NG tube (which absolutely must stay in). He grabbed it slowly like a sloth a half dozen times this morning. I did give him a tour of his face, helping his hand touch each item and telling him its name and purpose.  Nonetheless, unless I'm sitting next to him, I put a sock on his hand and even lay a stuffed animal on his hand because, sadly, he is not strong enough to pull his hand out from beneath a stuffed animal.

We spent time today with me reading stories aloud, playing Matchbox cars together, and my helping him to color (okay, I did 99% of the work, but Thomas did try to clutch the marker).

THIS IS THE BEST VIDEO:

Best video of all: Thomas gripping at a rosary dangled by his Daddy

Christmas Eve at Home

Chris sat with Thomas at the hospital while I went home to celebrate Christmas Eve with the five children in the nest. I confess, it was hard. My anxiety was spiking through the roof even before leaving Thomas behind and it did not abate. I did the best I could during the evening to make it sweet.

After dinner together, we drank hot cocoa (thank you, neighbors!) and made a baby Jesus ornament craft (thank you, friend who dropped off the kit!).

Then we opened stockings (thank you friends and neighbors who dropped off some stocking items without so much as a request from me!), as well as an amazingly generous and inspiring basket of very personally selected gifts from our neighbors.

My heart was squeezed as I saw each gift opened that I knew Thomas would particularly like. He isn't at home, he isn't at home, he isn't at home. All I can do is accept the emotional pain and use my will to be grateful for all our many blessings.

On the phone, I told Chris that after I got the little boys to sleep, I would be "heading back home," by which I meant PICU and I caught my words in my throat. Chris then confessed that he had made the same blunder minutes earlier to the nurse, saying that "Katherine would be coming home later," by which he meant returning to the PICU. These are truly strange times.

I headed back to Thomas and in my absence, a certain elf set out all the gifts per our family custom that the gifts appear overnight while children are sleeping.