Duplicated on our CaringBridge site for permanent record here.
March 12, 2021, written by Mama
115 days in the hospital: 63 in PICU, 28 in the Oncology ward, 15 at In-Patient Rehab, and 9 back in the Oncology ward.
The dust was settling pretty well, and then today a little medical "dust cloud" puffed up in our faces to confuse us. I hadn't announced this, but our surgeon planned to remove Thomas's drain this morning, which would have been a triumph for us all. The day was anticipated with excitement.
That wasn't God's will.
Thomas woke up seeming perkier, asking to eat some breakfast. No retching or fever for the prior 24 hours. He did a couple of art projects for me and even requested to get out of bed for the first time in a couple of days.
However, when our surgeon arrived to pull the drain, he saw the color the drain output had become overnight. This drain's colors have fluctuated for three months, but we are all aware of what the safe colors are. This brand new color was nearly coffee ground brown, still thin, but junky with material in the line.
Labs were drawn and the output is definitely high liver bile (along with still "unmeasurably high" pancreatic fluid). An active bile leak is an extremely serious risk, so next step was a CT Fistulagram (the somewhat risky test).
On the bright side, the CT showed good anatomy. Dr. B---- spent much time describing it accurately to me and my pencil scribbled as fast as I could, but I finally had to ask him to distill it way down for me. He told me that it "looks GREAT" how Thomas is connected and where the fluid is flowing.
So where on earth is that bile coming from? One of Thomas's postoperative loculated pockets of fluid (upper left quadrant)--these things take months and months to be reabsorbed--showed up today significantly smaller than before, so Dr. B--- thinks maybe that old bile fluid broke free, trickled its way along, found its way to the drain and made its exit . . . which would be a good thing. Tonight Dr. B---- is "going through Thomas's old scans with a fine tooth comb" to see what he can find.
Challenging news: The CT scan did reveal that Thomas currently has pneumatosis intestinalis: cysts of air within the walls of his colon. Reading up on this is enough to keep a person wide awake all night because it is either the benign, asymptomatic kind (Dr. B's hunch) or it ranges to the deadly emergency bowel-death kind. Only 0.03% of people ever even develop pneumatosis intestinalis. Pneumatosis would call for antibiotics, but Thomas has already been on those for several days. This condition calls for "complete bowel rest," so Thomas was immediately made NPO, including even sips of water. He isn't starving, as he receives TPN, but he still yearns for the flavor of food. However, reading up on the dangerous forms of pneumatosis cures a parent real quick of arguing this point: bowel rest, it is.
Our sweet boy has been so obedient about fasting through this entire journey. Tonight he called me to the bed in the quietest voice, "Mama? . . . When I'm allowed to eat again, I want to order . . . Never mind. It's okay. I'm just going to keep that in my own mind."
Tomorrow morning (scheduled for 4:00 a.m.!), Thomas will receive an abdominal X ray bedside to check on the status of the pneumatosis.
As soon as we returned from CT, Thomas began to feel sick: He began retching, which he hadn't done in 36 hours, and crying, spiked a fever of 101.7 before we medicated it, and took a second and later a third nap of the day. Dr. B---- suspects the fever is from the assault of the contrast dye injection toward Thomas's pancreas, a risk we knew we were taking. Remember the first rule of surgery: "don't mess with the pancreas." Thomas will be watched for the next couple of days for risk of pancreatitis developing.
Prayer Request: Over these four months, Dr. B---- has been intrigued, interested, and then impressed with our community prayer support, which I do inform him of. Today for the first time, he asked our community to pray for Thomas and that the pneumatosis intestinalis will be the benign form.
I, for one, was reminded by a friend of this Psalm I had posted on our wall in PICU, and I have written it anew in this room.
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