Gloria in Excelsis Deo: Day 112: Clamping the Drain

Duplicated on our CaringBridge site for permanent record here.

March 9, 2021, written by Mama

112 days in the hospital: 63 in PICU, 28 in the Oncology ward, 15 at In-Patient Rehab, and 6 back in the Oncology ward.

Medical Updates

Our surgeon Dr. B---- came by today for the momentous occasion. He clamped Thomas's surgical drain at 8:15 and declared in his quiet voice, "This is a huge day."

And then we all held our breath and watched. Dr. B---- had said that an acute problem would present within two to three hours, yet nothing acute occurred. I will admit that we saw some concerning signs: Thomas had a temperature fluttering in the 99s, he was lethargic enough to take two naps plus go to bed at 6:00 p.m., and he ate fewer than 100 calories all day. That said, he did not have leaking out of his stoma or abdominal pain, both of which would be "hallmark signs." Some of his days are bad, so maybe this was one of them. We hope and pray that the pancreatic fluid is simply following the path of least resistance and flowing into Thomas's GI tract as it should.

Miscellaneous Moments

I asked the Heme-Onc Child Life team to update Thomas's beads of courage, which are caught up only through January 19, close to two months ago. Meanwhile, Thomas's eyes just about popped out to see all the beads of courage he had accumulated "while he was asleep," as we call it. He spent a good amount of time sorting through the pretty beads.

My cute boy wanted to write down his own lunch order before I called it in . . .

. . . and, of course, he wouldn't eat it when it arrived.

Today Thomas enjoyed a session with PT in which he rode the tricycle all around the unit, among other exercises. He is spending more and more of his hours out of bed, even if we're not doing intense PT/OT, which is good for him. It's even good for him to fall asleep for a nap on the couch instead of napping in his bed.

Today the Heme-Onc Case Manager came to introduce herself for the first time. My phone began ringing with various home health care providers giving me information. My email buzzed with lining up in-home PT and OT. Thomas has been grumpy with me for being on the phone so much, but I know that these contacts from agencies are good signs!

I've had very little sleep for two nights: Receiving TPN overnight means a ton of fluid goes into Thomas's body and a ton of fluid has to come out of his body, meaning waking up Mama a good half dozen times nightly. Add in a few wakings to fix a blanket or a body position. Plus Mama usually has insomnia between his night wakings. And then Surgery shows up cheerfully at 6:00 a.m. and I always want to get out of bed and show them my Care Binder and discuss my observations from the prior 24 hours.

The short of it is: I've come home to sleep for one night! And Thomas was excited to have a Daddy-Thomas slumber party!

I drove the children after dark to the Isabella Santos Foundation "Sweet 16" event in celebration of little Isabella who died of neuroblastoma 12 years ago. The Foundation has raised and distributed $4 million to our local neuroblastoma center, thus saving many lives locally, regionally, and internationally. We are so grateful for their funding of important research right here in our hometown.

The "Sweet 16" event is to celebrate what would have been Isabella's birthday. There are numerous luminaries lit there tonight in honor of our son Thomas . . . and we are so grateful they are not in memory of him.

Thank you to some friends and family who also donated to the luminaries event tonight!