Day 99: Setbacks

Duplicated on our CaringBridge site for permanent record here.

February 24, 2021, written by Mama

99 days in the hospital: 63 in PICU, 28 in the Oncology ward, 8 at In-Patient Rehab!

Today was a busy day full of uncertainties and questions. Once again, I feel that God is revealing to me that anything I thought I knew was all an illusion, and certainly anything I thought I had control of was a mirage.

I had swapped with Chris last night, with great reluctance, but the other children need me, too, and I only make it home about two nights per week, which is nowhere near enough for their healthy wellbeing. Chris texted me many updates and I did not sleep much for worry. A night when the Surgical Resident comes for a middle-of-the-night consult and they do blood draws at midnight is not a settled one. This morning I tried making bacon and whole wheat pancakes with blueberries for the kids, but I was so distracted and worried that I burned batch after batch.

The main problem it all boils down to is: Thomas starts having diarrhea 30 minutes after his J tube feedings begin and has it every 90 minutes all night. Then he no longer has it during the day when he is eating by mouth. The one night he had no J tube feedings at all, he also had no diarrhea, instead sleeping all night. Clearly, there is a 100% correlation. Yet all the possible conditions Thomas is being investigated for involve fever (which he does not have) and do not turn on and off each day.

Thomas has only eaten a few bites in the last 48 hours because his appetite is gone. Nor is he tolerating his J tube feedings (and hasn't been for 8 days). He has lost 3.9 pounds in a week, which is 10% of his body weight. Last night, he was taken off of J tube feedings entirely and tonight is being put on TPN (nutrition straight into his blood stream), as well as IV antibiotics. He is now attached to an IV pole around the clock, which makes physical therapy and potty re-training very limited.

Pancreatic Fistula: This condition is under consideration and is one Dr. B---- has worried is a possibility for two months. The treatment would be surgery. Now that I've spent a day reading medical journal articles about this condition, I understand that this is very serious and scary with a concerning mortality rate. Thankfully, right now, the surgical team does not think this is likely because Thomas would be "acutely ill" instead of just somewhat ill, like he is.

Cholangitis: Thomas is and will always be at risk of cholangitis. Normally our liver sits atop our gallbladder which sits atop our small intestine. The liver drips bile through its ducts into the gallbladder, which drips it through its ducts into the small intestines. Thomas no longer has a gallbladder, so the liver sits atop the small intestine, with all its GI bacteria. If anything gets momentarily blocked, bacteria will back up into the liver ducts and proliferate, blocking them, and this is cholangitis. The treatment would be IV antibiotics.

C. diff.: Thomas is at high risk of this bacteria which causes diarrhea because he has been on so many antibiotics and has been living in the hospital for three months. The treatment would be IV antibiotics. The team has put us on "enteric precaution," which, like "droplet precaution" while awaiting COVID results, means we may not leave the room while  every person entering must don full PPE. Of course, Thomas has not even been able to give the diarrhea sample because (1) he only has diarrhea during J tube feedings, which have been ceased and (2) he hasn't eaten in two days, so there is little to be voided anyway. But we're still on lockdown until we can collect the sample, run the test, and get results back. Considering what I've heard from other parents of kids who actually caught C. diff in all its virulence, I rather doubt that a patient can have C. diff and go 24 hours without voiding at all.

Why was Thomas able to tolerate his J feeds for weeks of this formula at this rate but became unable to tolerate it eight days ago?

"Suffering is a great favor. Remember that everything soon comes to an end . . . and take courage. Think of how our gain is eternal."

--St. Teresa of Avila

* * * * * 

Amidst all this testing and discussing, Thomas had his sweet moments today. He was able to do at least a wee bit of therapy with each of his therapists, including having the best time in his first music therapy (while balancing on a peanut). He took some supported walking steps, which was heartening to watch. He ate a few bites of food: about 200-300 calories by my tally.

When Thomas is feeling too sick to do therapy, or he misses all or part of therapy, as he did three times today for a liver ultrasound, a blood draw, and his port being accessed, those are considered "missed hours." If the child does not complete 3.5 hours of therapy daily within the 5 days/week that therapy is offered here (weekends are off), insurance will not allow the child to stay in Rehab and Thomas would be sent back to the 11th floor.

The Atrium Health at Home dietician met with me to train me on all Thomas's pump equipment he will use at home, including a charming toddler-sized bumblebee pump backpack. One may repeatedly think one has understood the reality of the new situation, but there remain numerous opportunities to look Reality in the face and feel its weight.

Our two oldest children have our parental blessing tonight to audition for a musical revue, which is a beautiful bright spot of light, a shining moment of normalcy in an entire year of suffering. I am so happy for them.

God has pointedly sent me several fellow Believers during this journey. My cleaning lady in PICU talked to me at length about our shared faith and one terrible day left me a holy card for silent encouragement. One time she told me how she just loves cleaning the hospital rooms because it allows her to be very close to God and to converse with him at length: I felt that I have much to learn from my sometimes lofty position from this wonderful woman. One of Thomas's respiratory therapists in PICU was a man of strong Biblical faith and prayed for us and over Thomas. A few of my nurses were devoted Christians and weekly church goers. Today during my sorrow` I was sent another Believer who offered, "May I pray over Thomas?", which this person then did with such fervency and devotion that I was blubbering like a baby.

I'm only too aware that tomorrow is the milestone Day 100 in the hospital and my feelings about that are so difficult that all I can manage is, "Jesus, I trust in you."