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

Friday-Saturday, November 27-28, 2020, written by Mama

Reader's Digest Version: Bleeding is problematic and must be brought under control. Liver worsening (imagine being done), status of pancreas unknown, kidneys still in failure. Thomas continues his journey through withdrawal and while it is all anticipated, it remains a difficult path.

For those who like all the details . . .

The bleeding situation on Thursday "has set Thomas back a couple of days in his recovery," per a doctor. Friday was peacefully quiet and I was so emotionally and physically drained that I read "Jane Eyre" and watched movies all day and stayed off the computer--when normally I'm answering emails, helping my kids with questions, placing grocery orders, planning/ordering for upcoming holidays, ordering things on Amazon for the home, and so forth. I finally got to sleep more than 2 hours on Friday night.

Blood: Thomas's bleeding from the gastritis has slowed, praise Jesus, but continues frank blood from his NG tube. They are increasing today the Protonix (by 100%) and the Octreotide (by 50%) to see if higher dose will cause GI healing faster. The team is trying to avoid scoping his throat down into his GI track because that is invasive and requires re-intubating him. The abdominal drain is still producing a steady amount per 24-hour period, but it has been a brighter red since yesterday indicating more blood. It is not like he is still draining from his surgery 10 days ago, but his body's immune system is "very strongly active right now" (per doc), so it is continually producing new fluid that must be drained off.

Speaking of immune systems, I learned something from an M.D. today. Sepsis refers not precisely to the blood infection, but to the immune system response. (I just looked it up: "Sepsis is a potentially life-threatening condition caused by the body's response to an infection.:) Therefore, Thomas is being treated for sepsis because his immune system is responding as if he has an infection, even though all cultures (which they are taking from all over his body and repeating daily) have continued to be negative.

Thomas's blood pressures are not stable. Between my CaringBridge updates, sometimes they are hypotensive, today hypertensive, but totally not stable. It could be caused by withdrawal stress, by fluid changes (caused by many things happening here), and other causes I can't remember to list. They are working on it from various directions.

Thomas's blood numbers are checked with CBCs multiple times daily and they are wonky in multiple ways. Rather than my attempt to describe the ever-changing numbers, I will just say that he continues to get transfusions of plasma and packed red blood cells and platelets seemingly most days. The transfusion threshold for platelets while in chemotherapy is 10, and when we came here they raised that to 20, and increasingly till now it is 80: He is bleeding so much that they don't want his platelets below 80! My eternal gratitude to blood donors.

Kidneys, Liver, Pancreas. The kidneys are still asleep, so to speak. We sure would like them to wake up. The attempt with Lasix yesterday did not produce any urine output, which means the kidneys are not functioning. The creatinine is still hanging out around 2.4 (should be 0.3-0.7). Thomas is still in kidney failure. The nephrologist says he needs the "tincture of time" and it might be quick, but it is conceivable to be weeks or months.

Liver is worsening. They are running tests and just did imaging (results in two hours)

Pancreas was improving but hasn't been checked in a couple of days, so they are running blood labs.

ICU Delirium and Withdrawal Status: These two conditions are hard to disentangle. Thomas does have day/night confusion right now. His second full day off the ventilator was after the terrible bleeding episode overnight, so the team delayed starting Cluster Care and just let him sleep all day Friday. Today is Saturday and we are starting Cluster Care, which means trying to keep the lights bright in the day time and engaging Thomas more with reading aloud, watching movies, exercising his limbs, and then at night we will keep the lights dark and the nurses will stretch out their care activities from every two hours to every three hours. He will also start receiving Melatonin QHS (at bedtime) starting tonight.

On Thursday night, Thomas's Withdrawal Assessment Tool Score (WATS) was 8, which is "very high." With careful and changing doses of medications, they got his WATS score down to 2 on Friday daytime, but it went back up to 5 Friday overnight.

Fentanyl (mainly for pain) weans off to Methadone (done)
Versed (mainly for sedation) weans off to Ativan (done)
Precedex (mainly for sedation) weans off to nothing or to Clonidine (starting this process)
Thomas is no longer on ketamine PRN but is now on morphine PRN

During the overnight Friday to Saturday, Thomas had his first long stretches of alertness, so instead of staying awake for five minutes at the longest, he was awake for one hour on two occasions. His repetitive, involuntary jerking movements have resumed but are a slow writhing instead of jerking. He is currently doing a body twisting motion with his shoulders that looks like a person trying to roll over and he is clenching his jaw, pushing his lips in and out really hard, and doing a motion that looks like chewing his tongue (but I keep checking and he is not damaging his tongue). Add in his disconjugate gaze (eyeballs pointing separate ways) and it's a pretty pathetic site to see. At his most agitated in the middle of the night Friday, I finally asked Thomas, "Are you trying to get out of here?" and he nodded strongly, "YES."

The sore throat and swelling from the breathing tube should be resolved by now, so Thomas could talk in that regard. However, he will not talk and the PICU team cannot tell me whether it is because his brain is so clouded with the sedating drugs or whether it is more emotional: a number of the M.D.s have gently reminded me (and not joking), "Mom, he feels really, really sick right now. He probably does not want to talk to any of us and that is okay."

When he opens his eyes, I can see Thomas's life and personality deep inside. I always like to say to him, "I'm seeing your eyes now! Do you see Mama's eyes?" and he nods yes. He can answer questions nod/shake to me quite clearly. The one attempt at verbal communication was when the Friday day nurse was going off shift and I said on behalf of Thomas, "We're saying bye-bye to Miss Kelsey." Thomas very clearly mouthed "bye-bye" . . . and I cried!

Also, since coming off the ventilator, Thomas is now holding his beloved stuffed animal Sloth. After every change of position, I put Sloth back into his hands and Thomas has just enough strength to clasp Sloth's tiny little arm.

Now the weaning process gets really delicate and involves the opinions of numerous teams. If every time Thomas starts to experience withdrawal symptoms, we give a PRN dose of sedative, it's like giving a hit of the drug his body receptors wants and it will delay his withdrawal process. However, we do not want him suffering with withdrawal symptoms. I think this is why they so closely use the WATS scoring system so that they want to keep him at 3 or below. If the symptoms are tolerable, there is benefit to letting his body finish that process. If they are not tolerable, then we bring comfort with more of the medications he is withdrawing from. We have stepped down Precedex from 1 to 0.7 to 0.5 with a goal of 0.3. However, this weaning is causing breakthrough symptoms right now, so we may increase the timing of doses of methadone and Ativan.

This experience has given me much more insight into adult, illegal drug users trying to get clean. It would be nearly impossible and medically very dangerous to wean off these particular classes of drugs without using a medical center to help. I have a whole new insight into those pesky methadone clinics that none of us wants in our neighborhoods.

Simplifying. Thomas lost two points of access, one in each hand, because veins last only so long. They actually wanted more access points, but they're making do for now. As a mommy, I'm glad for two less ouchie things poking into Thomas. Swelling has gone down enough that they removed Thomas's Foley catheter, and I'm very relieved that risk of infection is removed. They want Tom's arterial line removed due to infection risk, so if they can get his withdrawal tremors under control, they can use a BP cuff to monitor BP and remove that line: decision to be reviewed this afternoon.

Nutrition. Thomas continues on TPN plus lipids. He will not receive any nutrition via NG tube until his bleeding situation is under control. Also, it is important that all available blood flow go to the liver, pancreas, and kidneys still healing, so it was explained to me that it is beneficial to leave the bowels "sleeping" so they require less blood flow.

Wound care. The opened-up abdominal incision wound that laypeople like us would consider appalling and ghastly is so minor compared to all Thomas's other issues that I will say it's proceeding along just fine.

Physical Therapy and Child Life . . . have joined Thomas's team! Now that Thomas is conscious, Child Life has come by to introduce themselves to him instead of just me. There is not much they can do directly with him yet, since he is often awake only 5 minutes at a time, but they are helping him by teaching me what to do now and what emotional/psychological expressions I might see from him in weeks to come. Also, Physical Therapy came by and taught me the initial exercises to help Thomas, who will have to gain strength to do everything again, starting with learning how to sit in a bed. I am to move his limbs so gently, so slowly--more gently than I would treat one of my newborns--and even that makes him shake with effort (the effort of me moving him). PT will come by once daily and I am to do exercises with him, too.

Tracking the Fluid

Weight at hospital admission: 19.1 kg (42.1 lbs)
Highest weight: 25.5 kg (56.2 lbs)
Saturday AM weight: 21.3 kg (47 lbs) . . . he is now receiving fluid in the forms of so many blood products and the fluid removal from his continuous dialysis has had to be slowed,

The Rest of the Sheep

In my head, I keep writing an essay about this experience as a mother. However, I have decided it is too hard right now "to go there." Our loved ones can probably imagine the feelings of a stay-at-home mother of 14 years who still cosleeps and still breastfeeds and has now not been home to her children in 11 days with anticipated weeks to go. I am the shepherd with my one lost lamb, guarding him during his journey through the dangerous wilds, while I know my '99 sheep' are safe at home in the sheepfold, regardless of what my emotions are.

Liver Scan Results a Relief

November 28, 2020

We can stand down, prayer warriors! The liver is not the source of Thomas's bleeding. Incidentally, the scan shows a narrowing of the hepatic artery, but that is an anticipated negative effect of the inflammation of the abutting pancreas. There is no intervention to be done at this time. The organs all need TIME to heal.

We proceed ahead treating this bleeding as gastritis. There will be a follow-up scan of the liver in 7-14 days.