Gloria in Excelsis Deo: Days 9-10: Thursday-Friday Troubles

This blog post is copy-and-pasted from our CaringBridge account (https://www.caringbridge.org/visit/thomaslauer) and published in retrospect.

November 26-27, 2020, written by Mama

After numerous days of sitting silent vigil by Thomas--my job being to remain so quiet that I would not startle him out of sedation, avoiding TV and whispering while on the phone--our parents' job changed dramatically on Thanksgiving.

In the morning, all of the specialty teams agreed that he was ready to come off of the ventilator and be extubated. However, he had been on Methadone only 36 hours, while it takes 48 hours to come to full effect, and he had not begun Atavan at all. I don't at all know that those were mistakes, but those choices changed Thomas's withdrawal experience. (Methadone and Atavan are quite sedating, so if those are causing too heavy sedation, that can make extubation difficult, too.)

That said, perhaps it was Thomas's guardian angel nudging the intensivist to say buoyantly that Today Was the Day! If Thomas had been under the heavier sedation required for ventilation during what transpired, we were told it would have added a very challenging complication.

As it was, that morning as I waited for extubation, I noticed that the by-then very minimal drainage of brown fluid (bile, etc.) from Thomas's NG tube had turned distinctly bright red and frothy and was increasing to filling two 30 mL bottles in just two to three hours. I drew attention to it and asked if we would keep the NG tube for drainage. I was told that it was the big kind of surgical NG tube (not the thin feeding kind) and it was standard to remove it during extubation, so that is what would occur. (What do I know? I'm just a mom.)

Extubation itself went beautifully. It only took 30 minutes for Thomas to come out of sedation enough to respond to commands and then only seconds to remove the breathing tube. I stayed with him and it was fine.

Afterward Thomas had about one hour of enjoyable lucidity! We watched his favorite episode of Octonauts (Colossal Squids!) twice and he indicated by nodding yes that he wanted me to read him several Frog and Toad stories. He could not yet speak because the ventilator causes inflammation of the vocal cords that has to come down.

Then withdrawal from opioids and benzodiazapenes began, but I did not understand that at first. Thomas began rocking his head left to right, over and over, and I thought he must be stretching his neck out after being still so long. Then he added in shrugging his shoulders compulsively before adding in kicking out his legs restlessly. Each of those three movements repeated all day long. Then he began having a tremor in his jaw until it overtook his whole body. He stopped communicating with nodding and shaking and instead developed a blank stare with his disconjugate gaze (eyeballs pointed in separate directions), which he had developed from the drugs the night before. All of these are signs used to measure withdrawal symptoms and his WATS score was "quite high."

I had been up since 4:00 a.m. and ended up sitting in a chair next to his bedside and holding his hand all day, staying awake 22 hours and playing many hours of soothing classical lullabies and the rosary chanted in Gregorian chant. I was grateful for a slice of cold pumpkin pie, which is what I ate for dinner one-handed while stroking Thomas. I left to use the facilities, but that was it: no sitting at the desk or sofa, nothing.

All day, Thomas's heartrate went up (to the 150s) and his blood pressure went too far down, plus he developed a low fever. He remained on dialysis but pulling off no more fluid (because we could not allow his BP to go lower).

Meanwhile, the gaping wound they had to re-open in his abdominal incision had been bleeding in a concerningly large amount since the day before, likely because Thomas was on Heparin, necessary for him to remain on dialysis. They kept having to call in the Surgical team to check on it during the more-frequent-than-twice-daily bandage changes. The hematoma has spread over much of Thomas's belly, now dark purple.

Some time after extubation, Thomas vomited frank blood for the first time. A few hours passed before he did it a second time. Then by shift change, seven hours after extubation, Thomas began vomiting frank red blood consistently for hours, all of is suctioned and measured, the tally growing larger.

It was at this time that Chris showed up, having gotten concerned at how many hours I was sitting vigil, so a lovely friend agreed to babysit till midnight. Chris walked in, took one look, and quickly called the friend to ask if she would please stay all night.

Consults began to be called in. Each specialty group came by in turns. A scan would not easily show a gastrointestinal bleed, and they did not want to scope a possibly already damaged GI tract, so they ran innumerable labs and planned to treat as if there were a GI bleed. Tom kept vomiting, Chris and I took turns suctioning and wiping him clean because the crowd of doctors filled the room and more nurses stood in the hallway. At the peak of frenetic activity, there were about a dozen staff helping Thomas to get stable.

Finally, an NG tube was placed back into Thomas while wide awake so that it will remove the bleeding without him continuing to vomit. His triple IV pole with 10 pumps is no longer enough for all his new medications, so he has a new double pole with two more pumps. They also really do need more access points in his body, so they brought in the specialist IV lady with the ultrasound machine. After examining both arms for ages, she spent thirty minutes with an ultrasound-guided needle digging in his vein but could not place new access. Veins that are sclerotic and friable are, I am told, a common problem after receiving chemotherapy. The nurse never was able to gain access.

The bleeding is likely stress-induced gastritis, so Thomas is now on a Protonix drip instead of doses of it. Then they added octreotide that is to stop gastrointestinal bleeding through vasoconstricture (although this mechanism of action will delay when Thomas can have food introduced to his system). The bleeding issue is entirely separate from the drug withdrawal issue, but it is a grace that we extubated him because him receiving heavy sedation while he was becoming hypotensive and tachycardic would have been Very Bad.

Through all the vomiting fresh blood and the painful procedures, Thomas did not complain. Staff would kindly tell him ahead of time what they were going to do and Thomas would silently nod 'YES.' As I watched a quiet patience unfathomable in a five-year-old, the staff were amazed, commenting often, and I kept think of Jesus's resignation and suffering.

During all of these changes so alarming to parents, Tom was still going through drug withdrawals! Still restlessly moving his body and shaking while we held his hands. He was not able to truly sleep from Thursday mid-morning when they began lightening sedation till Friday around 1:30 a.m. Whether this is resulting from the withdrawals or ICU delirium (night/day confusion) hardly matters

Around 1:30 a.m., Thomas seemed stable. He and Mama slept for two hours and then were up again, Thomas due to withdrawal/delirium and Mama due to insomnia/adrenalin.

The NG tube is draining his gastrointestinal bleeding, which is being treated with medications via drip.

He is receiving various medications to bring up his blood pressure. At times he received mask oxygen when his was dipping too low. He is also on a third antibiotic in case any of this is related to infection (yet more cultures are being done).

The nephrologist stopped the heparin in order to stop making the bleeding worse, but that also means that the dialysis machine will konk out any time now: however, the bleeding had to be stopped and we can work through the dialysis challenge tomorrow. Thomas's coagulation numbers were entirely wonky, so he received a unit of plasma, a unit of packed red blood cells, and a unit of platelets.

Thomas's withdrawal process is being aided by Methadone (on it for 48 hours now, I think) and adding in Atavan on Thursday afternoon. Both of those are the same class of drugs as the opioid and benzodiazapene he is weaning off of, but they are significantly longer acting. This makes them easier to wean off of by cutting down the doses smaller and smaller when the time comes. Plus, now that Thomas is not inbutated, we do not have to move fairly rapidly from deeply sedated (to tolerate the tube) to almost no sedation (so that he will follow commands and breath properly).

We don't know what today, Friday, will hold for Thomas, but we had been forewarned that the first night would be the worst in terms of withdrawal. We pray for continued improvement of his withdrawal process, a solution to the gastrointestinal bleeding, and for Thomas to continue to be a precious lamb.

What Milestones Need to Occur for Thomas to Downgrade from ICU to the Regular Oncology Floor?

The gastrointestinal bleeding has to resolve.
Thomas has to be mostly weaned off of the opioids and benzodiazapenes because they don't like to give many doses of "rescue meds" (essentially, hits of the above drugs) down on the regular floors.
Thomas's kidneys have to wake up some and he has to be safely off of continuous dialysis. (He could be receiving period dialysis.)
Thomas's blood pressure has to be quite stable. Crashing like it has been doing "would earn him an express ticket back to ICU."

Today is Friday: It is anticipated that Thomas will still be in ICU into next week, maybe through next week, as the amazingly skilled team solves these issues.