December 21, 2020 continued, written by Mama
Tuesday (Day #35) dawns better than Day #34 appeared to be. Mary (age 12) took the below photo of the Great Conjunction Monday night: the "Christmas Star" on the darkest day of the year and on the feast day of St. Thomas the Apostle.
By the end of Monday, my update could have been, "It looks like nothing has happened." Yet in between his 1:00 a.m. vomiting and the time I crawled into bed 22 hours later, I rode an emotional roller coaster that just about did me in.
A Day of Watching Labs and Signs
The bloody emesis had been the first unexplained bleeding in eight entire days, the only other bleeding being anticipated drain output. No wonder I felt like a sledgehammer had smashed down on my head. No wonder the whole team started investigating with doctors I don't normally see coming to consult. I, for one, thought we were out of those woods, but this perhaps explained why one of the PICU Attendings had said another day, "I won't consider Thomas out of the woods until I see him walk out those PICU doors."
Some of Thomas's liver labs came back very wonky, his direct bilirubin spiked, and his skin turned yellow, sending us all scuttling. Over the course of the day, Thomas's belly became more distended (ascites)--obvious visually and then we began measuring it with a measuring tape--and with some increased shadowing, which could have been caused by numerous things, from something as simple as third spacing fluid because his dialysis machine was turned off for four hours (I did not think this likely) to major bleeding internally (my terror). His blood pressure was quite low all day (e.g., 65 over 35 kind of numbers), despite increasing norepinephrine continually, which can be a sign of many things, including being dehydrated or having internal bleeding. Thomas's urine output that had been doing so well for days dribbled back down to near zero.
There were actually tons more labs and information yesterday, captured in my many daily notes, too much to include here. So much information yesterday.
Thomas's J Tube feedings had been stopped prior to a procedure at 11:00 a.m. and were not resumed because of the bleeding. They won't be resumed until Thomas has shown 48-72 hours without any bleeding or crisis.
Surgery did another abdominal ultrasound, the third in the span of a few days. Everything has risk and, as the PICU Attending said, "We don't do abdominal ultrasounds willy nilly just to peek inside because of the radiation exposure being significant. We don't want Thomas to conquer neuroblastoma only to develop a new cancer when he is 25." The ultrasound showed a pocket of fluid 7 x 4 x 5 cm behind the right lobe of his liver. It could be bile fluid from a blockage or a failure in the reconstruction of the bile ducts; however, the surgeon does not see a dilated bile duct to indicate blockage and thinks it is likely not bile. It could be a pocket of abscess / infected fluid and that even could be walled off enough to avoid the body's detection for a while; however, PICU Attending thinks that the body would have detected it by today and we would be seeing signs of massive infection by now, based on the size of the pocket. Thus, the team thinks the pocket is a hematoma, just as Thomas has several other smaller ones throughout his peritoneal cavity. This hematoma was not previously detected in the first two abdominal ultrasounds because, despite taking hundreds of images for an hour, apparently the images didn't go quite that far laterally. So, this pocket could be old, it could be new, and the difference matters. The blood will have to dissolve and drain at some point.
We watch and wait.
Even putting in another drain to Thomas's abdomen is a form of surgery enough that it is not worth the risk of "messing with him" at this time. "If he keeps having surgical interventions every couple of days, he will not improve." With every intervention he experienced, the benefit to the next intervention (or the risk of not doing it) must be higher.
A Field Trip to Interventional Radiology
Thomas took a trip to Interventional Radiology yesterday to have his PermaCath exchanged for a larger one. So far, it seems to have significantly improved the functioning of his Continuous Dialysis. We were even able to lay him on his left side again, where he hasn't been able to lay for days. He gets shifted every two hours around the clock (right, center, left, center, right . . .) so it's good to have left be an option again. The team here has done an impressively good job preventing bed sores: none so far in 35 days of immobility!
Withdrawal Status
Withdrawal is being managed very slowly because, hey, it's not like we're going anywhere. Yesterday after returning from I.R., we did briefly bring Thomas's Precedex down to 0.7 and that was too light of sedation. His withdrawal symptoms became too much and we increased the Precedex back to 1.0 with no plans soon to jump that far low again.
Our little boy is so weak, he can't squeeze our hands or wiggle his toes. His limbs are so skinny that his knees are hugely knobby.
You can imagine our shock when I had Daddy do a video call and Thomas responded. I held the phone in front of Thomas's face, his eyes closed, no response. Tom had not responded to mine or the nurses's requests all day: Open your eyes! Squeeze my hand! On the phone, Daddy started talking and said he was going to visit soon. Thomas's eyes OPENED WIDE. Daddy said he was going to read stories to Thomas and our little boy nodded affirmatively and strongly up and down, something he has not done since he was extubated briefly three weeks ago. I, for one, burst into tears.
I took a couple of half-hour naps with Thomas during the day, which was treasured by me.
The Strain on Mama
Yesterday I started to collapse emotionally due to all the terrifying "what ifs." Having Thomas bleeding again after eight days felt like a nightmare. Every little symptom might have been that he was starting to bleed out internally again. In my mind, all the wonky labs might have been the beginning of acute liver failure: I confirmed that I am his same blood type and I meet the general requirements to donate liver, so I was planning that out in my crazed, sleep-deprived head. I was experiencing panic attack feelings (heart racing, can't breathe well, room spinning) numerous times all day.
Normally I am juggling a lot of communication from PICU. Yesterday, my circles became smaller and smaller: stopped updating CaringBridge, stopped responding to even important texts requesting information from me, ceased updating my tiny circle of girlfriends who receive direct updates, and then stopped even updating the only two family members I update directly. I suppose I wouldn't ever stop updating my husband and, if I did, it means they've had to sedate me with drugs or carry me to the loony bin. Finally at one point last night, I had to hide my head under a blanket to "check out" as completely as I could. (Some kind, anonymous nurse silently placed a sparkling water and candy by my head to discover when I emerged an hour later.)
Yesterday I felt viscerally just how much my will is not united to God's if it is God's will that Thomas does not survive. How does one abandon oneself to God's will and persist in that abandonment? I ask sincerely because I do not know. My job as a mother is to stand guard, learn everything I can about Thomas's body every minute, and help fight for Thomas's life. Simultaneously, my job as a Christian is to be united to God's will, even if that is that my son's life is only five years long. Does abandoning myself to God's will mean I don't care or have feelings if God takes Thomas? I truly do not understand how to be a soldier in this battle while not caring what the outcome is.
A rescue babysitter came overnight with almost no notice so that Chris could come sit guard by Thomas. This allowed me to go to a Sleep Room. Here in PICU, there are 20 patient rooms in which their parents sleep on a little sofa and the lights go no darker than dim, nor do the noises ever cease. Parents may request a private Sleep Room down the hall, but there are far fewer rooms than parents. I only slept in one once after Thomas's primary surgery because I had not slept in a couple of nights. Since then, no amount of convincing by staff has gotten me to accept a Sleep Room because it would take me away from guarding Thomas overnight.
Last night, I knew I needed to accept a Sleep Room.
I slept in the pitch dark for the first time in a month. I slept for nearly seven hours straight, instead of three, four, or five hours in one-hour stretches. I woke up feeling much strengthened. I was only willing to do it because Chris slept by Thomas's bedside.
Tuesday dawns brighter and our orders of the day are to see if Thomas can have his bed raised maybe to 45 degrees (a big workout! ha!), start a Clonidine patch to help wean Precedex, and pull off a tiny bit of fluid, all while the goal is for Thomas to remain stable.
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