Day 113: Great Uncertainty

Duplicated on our CaringBridge site for permanent record here.

March 10, 2021, written by Mama

113 days in the hospital: 63 in PICU, 28 in the Oncology ward, 15 at In-Patient Rehab, and 7 back in the Oncology ward.

 

After making every effort to use my will to "choose hope," today I am reminded that the "hope" of the theological virtues of Faith, Hope, and Charity is the hope of salvation, and not "hope that God's will is what I will."  I suppose if we have hope of salvation, then we should have detachment to what sufferings we endure. Do with us what You will--I am a pencil, a broom, a ragdoll--just get us to Heaven someday. Is that it?

When Chris spends the night with Thomas, he knows I want updates via text, so around 2:00 a.m., my phone began buzzing. I did not sleep the rest of the night, as buzzes described Thomas having retching episodes which increased in frequency from every 45 minutes to every 15 minutes. Chris certainly did not sleep, caring for our son. It feels disingenuous to use the word "retching," but that is the medical term that goes in the chart. Because Thomas now lacks a stomach for any material to sit and wait, he can eat and "retch" mere seconds later, but no food will come out because it has already sped on its way. Most of us would say he was vomiting every 15 minutes all night, but the medical term for what he suffers is retching.  Chris stayed up all night with Thomas holding his hand and cleaning him.  Through Thomas's painful retching, Chris quietly went through our prayer intentions list and offered up this suffering as best as he could through the sleep deprivation.

Over the course of the morning, Thomas also developed a fever. He still won't eat anything by mouth. He is mostly silent.

Dr. B---- and his whole surgery team stopped by for a long consultation.

• Stat labs show that Thomas has not developed pancreatitis, so that is a very important positive.
• Dr. B---- suspects this retching is not related to the clamping of the drain, but he unclamped it anyway just to do an experiment.
• There appears to be a repeated pattern of Thomas doing well with eating food and having chipper energy and then becoming puny and having days of retching episodes and failure to eat. The hospital treats with antibiotics, not knowing what else to do, and he improves. Is this cholangitis, which Thomas is at high risk of developing? The only purist test for cholangitis involves getting a liver biopsy, so nobody wants to do that to Thomas. Therefore, we watch for clinical signs and, if he improves with the treatment for cholangitis, that lends increasing evidence to the diagnosis.
• Cultures were done for bacteria and fungus, so now we wait. Thomas was put on IV antibiotics immediately. He could have a central line infection. He could have an infection around the drain line inside of him. He could have an infection of his liver ducts.
• There is concern about one or two areas of Thomas's gastrointestinal reconstruction that may not be functioning. Dr. B---- showed us on a diagram, but the detailed explanation here does not matter. Thomas underwent a fluoroscope esophogram today and there is discussion of potentially looking down his throat endoscopically. If we can discern that those areas are truly not functioning, Dr. B---- is discussing the necessity of another reconstruction surgery. 

Even as of yesterday, Dr. B---- thought we would be discharged home "by the end of the week." He told us to get moving on plans with our Case Manager. Preparations were being made in a flurry. I ferried home 40% of our stuff because we couldn't possibly move home in one trip. I ordered our daughter an Easter dress because I felt so sure Thomas would be home and we could finally return to Mass.

Discharge plans are now on hold.

We have navigated all of this. We have navigated every missed holiday and birthday for four months. The parent in the hospital has endured extreme lack of sleep nightly. We have navigated the appalling hospital experience after our near-but-not-quite COVID exposure, something I am not writing about publicly. In the pre-COVID era, families experiencing lengthy hospital stays had their suffering mitigated by getting to have extended family and siblings stay in the hospital all day every day, yet we are utterly isolated. While all our medical staff live their lives--socializing with friends, gathering with family at holidays, hosting sleepovers and birthday parties for their kids, going out to restaurants--our family has been isolated, not even going to the grocery store, and the children have given up every single outside activity for the last four months. We have navigated the stress of two subsequent near brushes with COVID resulting in home quarantines (but no catching COVID), living in terror of being separated from our son, as is the daily possibility we live under. 

And now we stand--nay collapse to the ground--next to Jesus on his cross, facing not even knowing if Thomas's reconstruction has been successful or if we are going to start all of this all over again.

It is superfluous for me to write a description of our family's emotions at this time.

"Upon the Cross is our life and our consolation, and the Cross alone is the path into heaven." -- St. Teresa of Avila