Duplicated on our CaringBridge site for permanent record here.
March 8, 2021, written by Mama
111 days in the hospital: 63 in PICU, 28 in the Oncology ward, 15 at In-Patient Rehab, and 5 back in the Oncology ward.
Medical Updates
In gratitude for all your prayers, today I will present Medical Updates first. Thomas went for his imaging at 9:00 a.m. which I was able to attend. Contrast dye was injected (slowly, gently) into Thomas's drain (into his body) while under live X ray. I watched the screen and the doctor talked me through what he was seeing.
Our surgeon Dr. B---- later came by with his team later officially to present the findings: The results appear favorable. It appears that the pancreatic fluid leaking out is coming from the area that will self-seal when the drain is removed. One cannot be positive without taking the next steps, but it does appear that Thomas will not need pancreatic surgery.
Today we watched for signs of pancreatitis caused by even the more gentle test today. We were slightly concerned to observe a period of rising temperature, increased heart rate, and low blood pressure, but those symptoms seem to have passed already. Thomas has been on IV fluids all day and will be overnight "to help keep his pancreas happy."
The next steps of the plan are tomorrow morning to get a new baseline of Thomas's serum levels of amylase and lipase (pancreatic enzymes). Then the surgical team will clamp Thomas's drain. If the imaging is accurate, the pancreatic fluids should "flow toward the area of least resistance," which is back into the GI tract where they belong. If there is a serious problem, it should present itself through clinical signs within two to three hours.
If that step goes well, Dr. B---- would leave Thomas's drain clamped for about a week, mainly because he wants a second, identical scan out of an abundance of caution. He hasn't brought Thomas this far only to rush the last step and cause injury to the pancreas. Because the imaging itself can cause pancreatic injury is the reason the surgeon wants the imaging to be separated by a week. If the second image still looked favorable, then the surgeon would probably remove the drain right after the second imaging is completed.
Also, somewhere in there, more labs would be drawn to be watching the serum levels of amylase and lipase changing (for good or for ill).
News today could have been quite distressing, so we are left guarding our hearts, but choosing hope.
Spending Our Day
Thomas and I spent a sweet day together. While his appetite by mouth remains very low, he has not experienced GI pain in three whole days now. Just as the team had hoped, by stopping tube feedings and raising certain medications, Thomas's retching has plummeted (Saturday once, Sunday, once, Monday zero).
My boy asked me to read numerous books to him today, play games with him, and even do Kindergarten together. He completed his math, phonics, and handwriting.
At one point, Thomas did a video call with his siblings who took him with them to the back yard to play. Thomas was quite content to watch the screen run around and bounce here and there while his siblings described their own play to him.
We also spent an hour in the Play Room! What was funny is that Thomas did not even want to play with any of the toys there, but he wanted us to take our belongings into that room and just be in a different space.
You know you've lived in the hospital for a long time when . . .
The front desk staff know us by name and print out my badge daily and just leave it on the desk instead of my having to stand in line and request a badge. My favorite receptionist is the man, C-----, because he trims my badge so it fits in my lanyard name tag. The security, Officer M---- takes good care of us, too.
When we first switched from Rehab back to Heme-Onc, the records of our existence got lost and the nurse adding our name to the computer list to be allowed to receive meal trays was not working. The Nutrition department wasn't allowed to send a meal tray until Thomas showed up in the computer, but the Nursing staff was unable to fix it on their end. The Nursing staff called and the phone clerk who answered happened to know us by name (because I've called in three times a day for four months) and she said she was going to get us meal trays no matter what and regardless of whether we were in the computer system, so she just arranged trays and walked them up to us!
I've also enjoyed sweet conversations with the Nutrition phone clerks, whose faces I've never seen. I remember when Thomas was finally cleared for foods: the Nutrition lady took my call, looked at her computer screen, and screamed! She'd been taking my guest tray orders for two and a half months, and for the first time, the patient's orders read "regular pediatric diet." She was overjoyed for us! And then last week, a Nutrition lady answered the phone whose voice I hadn't heard in weeks. She said she'd gone on vacation and was back and had just been wondering about us, so she was glad to hear my voice, but sorry we were still in the hospital.
After having Thomas's imaging done, I asked the staff if I needed to wait for Transport to arrive and escort me back. (This was the same Transport person who I can only guess was new on the job and that morning had no idea how to find the imaging room so I had to show him the way while he escorted us.) The staff person said, "You're like family. I'm just going to badge the door for you and not look while you walk away. Here, just take Thomas's file back to the room with you."
I know so many staff here, from janitors up to Attendings, that when I walk around the hospital, I'm seeing faces all the time. Doctors greet me often from all over the hospital, reminding me that they saw us when we were in PICU, etc. I see various staffers and I know aspects of their lives, I ask them how their child is doing in school, or how the baby twins are growing up, or how the final wedding planning is going, or how the husband at home is recovering from his cardiac surgery. Staff and I share book and movie recommendations, and then I'm here so long that when we see each other later, we can ask the other one how the book or movie was.
The staff at the Panera in the main hospital lobby know by name Chris and me (mainly Chris because I'm stuck in the room), know our favorite orders, and throw in a free cookie for Thomas (not that he can eat a full-sugar cookie :).
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