Duplicated from our CaringBridge site for permanent record here.
January 11, 2021, written by Mama
For 55 days I've tried so hard to hide the raw negative feelings and to share our journey only after I've been able to process and come to some kind of Christian grace about each day's situation. However, I'm so bone-tired, frustrated, angry, and disappointed.
Thomas's medical journey has been such a roller coaster fraught with setbacks that I'd set a rule for myself that I would never post on the CaringBridge about hopes or plans, but only about achievements already completed. Yesterday I foolishly thought that an entire week of daily progress and an entire week of daily labs improving to normalcy or nearly so was enough that I could not only feel hope but share it.
How mistaken I was.
Within an hour or two of publishing, Thomas's night turned poorly: He was woken numerous times hourly all night retching until one of us would suction the emesis from his throat. He cannot properly vomit easily like typical people, so the emesis just sits in his throat, causing him to gag endlessly until one of us removes it. Zofran around the clock the last couple of days hadn't helped and neither did Benadryl added last night. We all came to wonder if the retching was not actually a sign of withdrawal, but was a sign of infection. His withdrawal sign lo these many weeks had been a distinct cough followed by a yawn, but that disappeared early last week only to be replaced by retching and emesis, which increased in pace for all of last night.
He has had low-grade fevers all week, but Sunday afternoon and overnight into Monday they became higher (101.8) and persistent. We gave one dose of acetaminophen and as soon as it ran out a few hours later, the fever jumped right back to where it had been. That is more typical of infection fever than withdrawal fever.
His heart rate became tachycardic as I discovered at one waking when I opened my eyelids and looked at his monitor, like I always do first, and saw his heart rate was 173. His blood pressure became hypotensive, with his numbers in the 70s and 80s over 40s, alarms blaring at me throughout the wee hours. Two more signs of infection.
The morning labs came back nearly all of them trending in the wrong direction. All those organ systems I wrote about yesterday? Kidneys are good still, but liver numbers, pancreas numbers, and infection indicators all trending badly.
I have been asking for weeks and weeks to have Thomas start his J tube feedings and it has always been delayed for one setback or another. Numerous systems will improve when Thomas is receiving enteral nutrition. His gut infection risk will decrease then as well. His strength will improve. Do you know what it feels like at a visceral level to know that your child has been fed nothing but clear liquid by IV for eight weeks and to feel his skeletal limbs, his knees literally twice the diameter of his legs? Now J tube feedings are delayed again because if Thomas has any infection, he absolutely may not have food in his gut.
Also, getting his J tube feedings up to full nutrition (a process that could easily take 10 days, but our surgeon thinks longer for Thomas "because it's him") is a prerequisite for any oral feedings. (And there are so many additional prerequisites for oral feeding.) When Thomas was given his J tube, it was to be a just-in-case back-up but it was anticipated he would be eating well orally. Now, when the Speech Therapy Team and Surgical Team spell out for me all the steps required for him to even put the first bite of food in his mouth, I seriously think it will be so many months that he will be going home 100% fed by J tube formula and not even beginning his journey of eating typically. Maybe I'm supposed to say I don't care, I don't mind, it's fine by me, but I do care.
How are we going to tell him what has happened to him and why he may not eat? Already he asks for apple juice and I have to say no, to which he sobs in response.
Today Thomas underwent his daily X ray -- yup, he's had probably 50 chest X rays during his 55 days here -- plus an chest ultrasound and then later an abdominal ultrasound. The chest X ray and ultrasound were to check on the status of his pleural effusion and decide whether he needs another chest tube installed (which will further delay his progress in certain ways): decision still pending. The abdominal ultrasound was to check on whether Thomas had any localized abscesses of his liver (which would release liquified necrotic tissue into his peritoneal cavity) or any dilation of his biliary ducts (which might explain his climbing bilirubin): the ultrasound revealed neither, which simply means that we don't have to rush to another CT scan when he just had one four days ago. How much radiation has this child been exposed to from CT scans in the last nine months? Fifteen CT scans maybe?
If Thomas's night had not been so bad and his labs not changed as they did, we would never have thought anything was wrong today. His retching stopped on a dime at 5:30 a.m. His HR and BP returned to beautiful numbers. His fever actually seemed to break today, his temps down at high 96s and low 97s (normal for him), where he hasn't been for nearly a week. Chris was so worried at my overnight updates that he rushed in this morning to stay with us all day and I look like a darned fool with Thomas's monitor flashing beautiful numbers all the while.
Of course, I understand that we can't put formula into his gut now. If he were to be receiving feeding and he experienced a hypotensive episode due to stress in the body, he is at high risk of tube feeding-induced necrosis (death of bowels).
So we wait, indefinitely, again.
We are treating as if he has an occult infection, so he's on the big boys: Cephapim, Flagel, and Vancomycin. I don't even bother looking up the side effects because there's no point. If Thomas has caught a hospital-acquired infection, he simply has to have all these. This kid has been on a rotating serious of antibiotics for 55 days now, plus broadly covered with Septra weekly for six months prior. And when he leaves here without his spleen, I hear he'll be on a daily antibiotic for the rest of his life, so I guess I'd better get used to this idea.
Thomas is overmedicated today as we continue the complicated dance of increasing the step-down drugs (Methadone, Ativan, Clonidine) while reducing the various pain and sedation medications (Dilaudid, Precedex). If the team errs in one direction, he experiences terrible withdrawals, but in the other direction, he is left completely snockered. Last night and today, Thomas spoke no words to me and lasted about five minutes awake at a time. He was so tired that he could not even nod or shake his head. When he is this heavily medicated, he cannot possibly make the progress he needs to make with Speech Therapy (swallowing a few drops of water is our current project) and Physical Therapy (just straightening his limbs is our current goal), nor can he practice talking.
 |
| Thomas asleep nearly all the time |
I sat with our surgeon today and brainstormed a list of requirements to be discharged home. We're talking months and that is before we go home for our many times-weekly physical and feeding therapy appointments that I'm sure Thomas will be enduring.
Our surgeon said, "You're doing a great job. An exemplary job." That is a common theme I'm presented with and I increasingly can't bear it.
A good job doing what? No amount of my sitting here like a guard dog saves Thomas's life [Husband's edit: Katherine has literally and actually saved Thomas's life numerous times by pointing out symptoms to nurses and doctors that only a mother would notice]. No amount of my taking copious notes and doing what work it takes to understand all the medical lingo and procedures speeds his recovery [Husband's edit: Every PICU nurse and doctor will attest that having a parent sit with their child, even when sedated, will dramatically increase that child's chances of survival. Believe it or not but there a many children that go through PICU and their parents are only able or willing to visit occasionally. I don't judge them too harshly, the financial cost of dedicating one parent full time to a child's care in the PICU is significant. For many families, simply taking off work is not an option.]. No number of months when I stay up past midnight in order to be present at night Rounds and I am up by 6:00 when Surgery visits, and I've been woken all night long to help Thomas has helped anything [Husband's edit: This last claim is very far from the truth]. No matter how many times I've noticed details, changes in Thomas symptoms, or spoken up with treatment ideas while I'm so shy in front of Big Important Doctors--nothing has made him be able to sit up in his bed, or laugh even one time, or eat a bite of food, or play. My patience at living in this one room, the extent of my walking being 100 feet to the public bathroom and back, my eating the same three meals from Room Service for eight weeks with few exceptions, my sleeping in front of strangers, my showering in a public shower stall and walking past everyone with wet hair and a laundry bag, and my living in a fish bowl--none of my longsuffering has changed anything for the better that I can see. [Husband's edit: On the contrary, this is the single greatest accomplishment of Katherine's life ... no matter Tom's outcome. Thomas has woken, crying out in panic or pain hundreds of times, and it was the soothing voice and the loving gentle hand of his mama that comforted him. God did not make us to sit up in bed or laugh or eat or play. God made us to know Him, love Him, and serve Him in this world and to be with him in the next (Baltimore Catechism), and by this measure, and with his mother's help, Thomas knows, loves, and serves God more than us all. If singing is praying twice as they say, may the cries of Thomas's- and all of our- suffering sanctify us all the more to make reparation for our sins and to glorify Christ the King. "That I may know Him, and the power of His resurrection, and the fellowship of His sufferings, being made conformable to His death." Philippians 3:10].
So I stay and put all my life into this and it has no effect whatsoever. Half the time, my suffering child doesn't know who I am. He always knows who everyone else is--his father, his siblings, his Child Life therapist, the cancer doctor he hadn't laid eyes on in his eight weeks in PICU--but half the time he doesn't know his mother, even when I tell him. They can keep telling me that this is delirium, but I no longer believe it. [Husband's edit: shortly after one time that Tom wasn't able to say the word Mama, I showed Thomas a picture of he and his Mama, and I asked him who that is, and he started crying and said "Mama" though his tears. The Nurse Practitioner told us that she has heard older patients describe the delirium, and they said that it was very strange. If someone would show you an apple, you would know it was an apple, you knew what it tasted like, and smelled like, but you wouldn't be able to say the word apple].
The doctors, nurses, and all manner of staff here, now they are having an effect and are helping my son. I've been a homemaker for 14 years and homeschooler for ten years, yet I find myself useless and invisible to everyone who counts on me.
Meanwhile, I'm probably ruining my children's lives. Each one of my kids at their various ages of 3, 8-this-week, 9, 12, and 14 is experiencing problems and trauma related to this. I don't share their private details, but believe me that there is no way our family is going through this without much collateral damage. How will I ever fix it? How will my preschooler's childhood ever be the childhood I formed intentionally for his older siblings? How will my teenagers navigate these challenging years when their mother is outright absent and all the attention in the family is sucked into the black vortex that is Thomas's illness? How will the children maintain a relationship with me, no matter that I'm calling them, emailing, texting, and trying to visit them most days for a few hours? It's nowhere near enough and they are just slipping away.
On November 18, I left the house with bags packed for five days, not knowing how I would bear being away from my family for that long. It is within the realm of possibility that I will end up having unwittingly moved away that day for half a year before Thomas and I are moved back home.
I don't know how to take one more step, yet I don't know how to do anything other than put one foot in front of the other. [Husband's edit: "Be still and see that I am God..." Psalms 45:11].
 |
| Thomas and I did a little art project today. |
No comments:
Post a Comment