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Day 24: Coagulopathy
December 11, 2020, 1:00 p.m., written by Mama
Please see the bottom of this email for information advertising a blood drive in Thomas's honor. So many lives are saved by blood donating heroes!
"Coagulopathy (also called a bleeding disorder) is a condition in which the blood's ability to coagulate (form clots) is impaired. This condition can cause a tendency toward prolonged or excessive bleeding (bleeding diathesis), which may occur spontaneously or following an injury or medical and dental procedures." (Wikipedia)
I published our update yesterday, but it was not a short-lived, half-hour episode. Thomas has developed coagulopathy: I'm not sure when the team would say Tom earned that diagnosis, but I've heard the term batted around for a long time in this total absence of space-time continuum that is PICU. For days? For a week? I don't know.
It is explained to me that Thomas's body has more needs for coagulating factors than his body can possibly make. His bone marrow actually seems healthy and the many-times daily tests show that he is growing baby blood cells at the normal rate. His liver is still recovering, so it is not growing its share of coagulants at the normal pace yet. Still, Thomas has had 6 surgeries within 24 days and God didn't design a body to withstand that.
I've learned more about blood than I ever wanted or thought I'd learn. I'm the one who has always fainted at needles and who had to look away at the sight of blood from me or anyone else. They do my blood lab work with me lying on a table so I have nowhere to fall. Yet here I am: A couple of days ago, a new-to-us nurse asked me kindly if the sight of the blood filling up one of Thomas's (five) drains was distressing. The very-familiar-to-us nurse laughed and explained to her what I've witnessed over three weeks. She's right, I'm not bothered by much anymore.
At least, I'm not bothered in that I'm not nauseated or faint. However, I am feeling low and weary. Tears are springing to my eyes quickly. I'm so fatigued of watching drains being emptied hourly, the 500 mL WoundVac filled up by my head where I sleep, the bandages being changed, the sheets becoming red splotched.
One doesn't want to be melodramatic because that is not helpful. I'd learned much about the signs of acute bleeding emergencies because Thomas had several of those. There are distinct signs when someone is bleeding out internally even when one can't see a drop of blood on their bodies. Alternatively, I've been learning about coagulation bleeding problems. In this case, we can see the blood oozing and dripping from many locations and the numbers (up on the screen and via the labs) are different, telling of a slow, but urgent bleeding problem. Blood also has various shades of color and differences in consistency, and all those clues speak to an acute bleed, a coagulation problem, a new bleed, an old bleed. It feels awkward and possibly incorrect to call the past nearly 24 hours an "emergency," yet I ponder for hours and come to the probably stupidly obvious conclusion that if a tiny, 40-pound body requires nine units of blood products within 18 hours, then he certainly would have died without them.
PICU nurses are accustomed to working in the dark by flashlight at night, but last night I noticed that the room lights were left on nearly all night, I think for the first time. The two nurses spent much time quietly watching by Thomas's bed. Various MDs popped in several times. Bleeding cannot be seen from their hallway desks, blood consistency cannot be analyzed in the dim light. I didn't get much sleep.
At Rounds this morning, I came to understand from words being said that the plans to continue weaning Thomas off sedation and extubate him were paused. I asked for clarification, which they provided and one of the doctors said, "I'm sorry," knowing how very much I am looking forward to communicating with my boy again. Tears sprung to my eyes. In my fog, I had not pieced together that it would be entirely imprudent to extubate a patient who is unstable. So stupid, so ignorant of me.
How Do We Fix Coagulopathy?
- TIME AND PATIENCE
- Thomas would benefit from needing no more surgeries, no more cutting.
- The team needs to to stay ahead of his blood needs instead of reacting. They have been taking labs (CBC, INR, TEG) something like every 3-6 hours. They want his coagulation factor numbers to be really generous.
- Probably when Thomas transitions from continuous dialysis to intermittent dialysis, that will help the problem, too. Every time his blood circulates through the machine, more platelets stick inside it and don't come back to Thomas.
- When the liver regains full health, that will help.
Thomas just departed for the OR again for what will either be essentially a change of bandages or his 8th surgery. He was due to have his WoundVac changed today anyway, but what was going to be done in his room now has to be done in the OR in case of significant bleeding. There are scenarios under which the surgeons will have to open up the fascia they just closed to stop a bleed inside of him. They are also considering suturing shut his layer of skin today instead of waiting till Monday-three-days-hence as planned so he can avoid yet one more trip to the OR.
One does not want to be melodramatic, but one does want to face reality: it seems to me, in my quiet ponderings in this room, that Thomas's life has been saved more times than I even realize by blood donations. He has now received 35 units of blood products during his 24-day stay (but most in the last two weeks). Before the advent of safe blood donations and transfusions, patients simply died.
How will I ever care sympathetically again when one of my young children falls and skins a knee, a scant blush of blood on the skin? Will I be a broken mother after this or have gained wise perspective?
My lovely friend-of-20-years, Janeane, has from 3,000 miles away organized a virtual blood drive, which is a new thing I didn't even know about. People from anywhere they live may donate blood in Thomas's honor at their local blood bank. Janeane posted a summary of Thomas's story on Facebook followed by instructions. (If you are one Facebook, I would love for you to go to my or Chris's wall, go to the full post advertising this and "share" it to your wall so it will spread far and wide!)
"If you are at all interested and able to donate blood, please click on the link below to get scheduled. Vitalant has it organized so that regardless of where you live in the country, you can set up an appointment with a Vitalant donation center and give to this specific blood drive in honor of Thomas. The blood will go to whomever needs it. If you do not have a Vitalant center in your area, you can still help by making a donation at any blood donor organization (with the ongoing pandemic, we are at risk of a blood shortage, so everything counts!) or just by simply sharing this story to raise awareness or both! Thank you!!!"
Vitalant: https://learn.vitalant.org/LP=148?drive_code=N1484&division=WEST%26%region=RNO
Red Cross: https://sleevesup.redcrossblood.org/campaign/in-honor-of-thomas-lauer/?fbclid=IwAR13igBFs_08XMxrxzh04Gc2eOqPmLEyrerEWoPjsIa-UhQlsoDnUvJO9Es
Day 24: Successful Closure
December 11, 2020, 6:45 p.m., written by Mama
Thomas had a successful visit to the OR!
We had been told the plan at Rounds in the morning and spent the day just waiting until a spot opened up between planned surgeries in the OR, at which point the surgeons called the nurses to bring him on down. Thomas left with our not knowing if this would be essentially a bandage change or surgery #8, but it did turn out to be the latter.
The surgeons did discern the need to re-open the fascia and found diffuse bleeding inside. They dealt with it, cleaned things out, clotting was already much improved, and took the chance to peak at his reconstruction: All the places sewn together look beautiful and are not "leaking" (apparently a very good thing).
The fascia was sutured up again and this time the layer of skin was sutured also! Thomas has a SkinVac (proper name?) on the outside now.
The team's plan is to give him blood products prophylactically on a schedule for at least the next day in order to try to stay ahead of his body's coagulation needs. Right now, his color is good, heart rate and blood pressure beautiful.
After Thomas was settled back into his room, Chris began singing to him and Thomas opened his eyes nice and big to see his Daddy! My camera snapped a moment too late, but one can still his eyes are somewhat open.
As hard as it is for me to be here nonstop, it is perhaps equally hard for Thomas's Daddy to have to leave repeatedly.
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