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December 5, 2020, 1:00 p.m., written by Mama
Dear Prayer Warriors!
Thomas's surgery has been moved from Sunday morning to today Saturday at 3:00, the hour of Divine Mercy. The surgery is planned to last one to three hours.
The previous emergency surgery in the early AM overnight hours of Friday morning was paused by the surgeons who determined that Thomas' body would not sustain continuing. They packed him to control bleeding and left him open to continue with the surgery three days' hence. They originally thought the follow on surgery would be Sunday, however, the surgical team, monitoring his blood labs (which are done about 4x/daily), made the determination to move surgery up to 3:00 pm today because his liver labs are trending in the wrong direction.
Today Thomas has been showered with prayer and graces. Our parish priest scheduled an off-schedule Mass this morning to which about 300 people came. At the end, Tom's daddy stood up and intoned the Salve Regina, and everyone followed. The priest led the Rosary. So many religious orders are praying for Thomas and I have been writing their names down on our PICU white board. Thousands of individuals are praying and sacrificing for him. Not that we wanted Thomas's surgery to be today, but now he is even more wrapped in prayer.
We have babysitting at home and meals provided this weekend, thank you!
Day 18: Results from Surgery #4
December 5, 2020, 5:15 p.m., written by Mama
Briefest update: Overall good results!
I'm going to start counting Thomas's surgery, because he has more in his future.
Surgery #1: Open biopsy and placement of port back in June 2020
Surgery #2: Gross total resection Nov. 18
Surgery #3: Emergency surgery, loss of organs, Dec. 4
Surgery #4: Planned exploratory surgery Dec. 5. We went into this surgery knowing already there would be a Surgery #5 following.
The bleeding in Thomas's peritoneal cavity has stopped: good!
The remaining nub of pancreas had a little bit more necrosis, so that was removed. (This is a negative.)
The remaining nub of stomach did not have more necrosis. This is very good because apparently even having a nub of stomach and pancreas allows for a much better reconstruction.
The surgeon did a necessary dye test to check Thomas's bile ducts. The bile duct from the liver to the duodenum has necrosis and needs reconstruction. (This is a negative.)
The surgeon ended up leaving the gallbladder in place because when he removes it, he needs to be ready to do the bile duct reconstruction, as they are geographically close.
Thomas's discontinuous esophagus was not dealt with today.
Thomas was left open again, sealed with a WoundVac.
The next surgery (#5) is planned for Monday Dec. 7. Again, there will be a plan but much will depend on Thomas's strength overall and what the surgeon finds. Prayer intention: The best possible hope is that Thomas's body will be strong and that the surgeon completes the reconstruction of all these organs such that Thomas would not face another big reconstruction surgery (which would have to be put off several to maybe 8 weeks away).
If Thomas is not strong enough or something goes awry, the surgeon will probably simply establish some way for him to receive nutrition temporarily and will do something temporary with the esophagus. Then he would close up Thomas's abdomen and let him heal for weeks before another surgery.
Chris and I have avoided learning many details about Thomas's best case nutritional future, as the magnitude is simply too much at this time. However, we do understand that Thomas has potential to look on the outside like he is living a fairly normal life. He could eat actual real food orally, although probably in small amounts, like someone with gastric bypass surgery. He may have to avoid certain types of foods, such as sugary or fatty. He will probably have to take pancreatic enzymes before each meal, as well as take nutritional supplements. There are things that modern medicine can do to make this loss of organs less devastating such that Thomas can anticipate a happy life.
Day #18: Emergency Bleeding
December 5, 2020, 6:45 p.m.
Prayer warriors . . . Thomas is having emergency bleeding and is going back into OR right now.
Day 18: Back from Second O.R. Visit of the Day
December 5, 2020, 9:40 p.m., written by Mama
It turns out Thomas would have Surgery #4 and #5 in one day!
Thomas experienced emergent bleeding after his planned afternoon surgery, with 400 cc coming out of his WoundVac in definitely too short of a time. Pushing saline, blood transfusions, and Albumin did not fix the heart rate and blood pressure, and meanwhile the blood kept draining, so the Surgeons whisked Thomas off to the O.R.
This was what is apparently called "Medical Bleeding," a more diffusing bleeding and not a specific vein, artery, or cut that can be surgically repaired. We're not sure all they did to fix the problem, but we do know they used hemostatic spray.
Thomas is back safely in our PICU room with big hopes that the bleeding is controlled this time. He is now significantly swollen again, so we are hoping our only task is the mundane hard work of pulling off fluid with the continuous dialysis.
On a night like this, it is not likely I'm going to sleep soundly because I will be on high alert.
This is a roller coaster for all of us.
Plan: Surgery #6 on Monday. Jesus, I trust in you.
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