Day 16: Post-Op in the ICU

Copied and back-posted from our CaringBridge site for permanent record here.

December 3, 2020, written by Mama

What a night! A challenge here in PICU that I think will leave psychological effects I will have to work through is that I can't trust Thomas's state of being to persist very long before it suddenly changes.

Seemed Like Smooth Sailing

Thomas had gone 24 whole hours so stable that he had not needed one transfusion. He was very peaceful, sedated enough to be happily intubated but awake enough to have me read books to him and to interact with nodding and shaking his head. He did beautifully on his breathing trials. And he went 48 whole hours without any discernable breathing. We were ready to extubate!

Rough Waters Overnight

However, on Wednesday night, his demeanor shifted and two weeks in PICU has taught me more confidence as a mother. We had a nurse new to Thomas, so she had no familiarity with his personality and I kept telling her firmly that something is wrong. He stopped communicating, withdrew, and had a flat affect. His limbs became stiff and contracted, which was an absolute first.  His heart rate and blood pressure had been creeping upward all afternoon and were now high. His tremors, which had disappeared, had returned.

Thomas still has his surgical drain 16 days post-op (nope, not normal) and it typically exudes about 200 mL per day. I was watching all Wednesday that the nurses were having to drain it more often. By the time the night shift came on, I insisted the nurse log into the computer and read off to me the 24-hour totals for the past numerous days. Indeed, they averaged around 200 mL and that current 24-hour chunk ended up being 400 mL. 

I asked the nurse to talk to the Attending, and he ended up calling Surgery, and they ended up visiting bedside at midnight, taking photos, and waking up Thomas's head surgeon at home in the middle of the night. At least this confirmed that my concerns were legitimate and not crazy.

At 3:00 a.m., Thomas's oxygen desatted into the 80s for no discernable reason and Respiratory had to increase his ventilator oxygen from 30% oxygen to 100% for a few hours. After that, about 10 doctors and nurses were in our room for two hours trying to get him stable. He began coughing productively for a couple of hours, and the nurse said his lungs sounded "junky" and "terrible." For those who don't know how a ventilator works, that means that the nurses were repeatedly sticking the long straw device down his breathing tube to suction straight from his lungs, which is distressing for a little boy and probably for any of us.

After exactly 48 hours without GI bleeding, at 4:00 a.m. Thomas's nose began trickling blood again and his OG tube released blood again. This put everyone watching on high alert.

There were people in our room all night and I slept only a few 30-minute snatches.

Crisis Averted

An abdominal x ray this morning determined that Thomas did not have a hole in any of his organs that was releasing air into his peritoneal cavity, thank goodness. The OG bleeding seems to be old blood and may represent the large blood clot liquefying. The abdominal drainage was tested and is pancreatic ascites containing high amylase, indicating that Thomas still has (or has a flare-up of) "rip roarin' pancreatitis," per the Attending.

Thomas's blood labs show that he is still quite sick but that he is not in a bleeding crisis.

The team believes, and I concur, that the likeliest suspect was pain. The doctor on rounds reminded everyone that pancreatitis is "exquisitely painful" and that Thomas "deserves good pain relief." Thomas was removed from the Fentanyl drip today and switched to Morphine because it turns out that Fentanyl likes to stick to plastic, which means Thomas has been losing Fentanyl to his continuous dialysis machine.

It is certainly looking like Thomas will transition from continuous to intermittent dialysis and likely go home on that (not that going home is in his near future). There is now the beginning of discussion of what life will be like if his kidneys do not recover or recover only a percentage of their function. (St. Benedict, pray for us.) Therefore, the team decided to have a Permacath implanted in his chest on Friday afternoon to accommodate intermittent dialysis, rather than do that in a couple of weeks and have to intubate him a third time, banish the thought. Plans are being made for extubating on Friday evening or Saturday, for managing withdrawal we hope better this time, and for when NG nutrition can begin as "trickle feeds," which could help (1) with mucosa healing, (2) with peristaltic action to awaken the bowels, and (3) avoid translocation of bacteria.

Thomas and I both need rest. I'm a little bit sad tonight: missing Thanksgiving was one thing, but tomorrow I miss my firstborn's birthday, and two days later St. Nicholas's day, which we always love celebrating, and the friendly staff here are starting to talk to me about how Christmas is celebrated here in the hospital.