December 27, 2020 at 6:45 p.m., written by Mama
Special Note: I have been ignoring most texts and phone calls today because I have been truly collapsed emotionally and have had to protect my health. Normally, all these weeks, it has been welcome how often you all reach out to me. Right now, almost anything sets me to crying again and I just can't. Please don't disappear on me, but please understand if it takes me days to respond to a simple text.
Thomas survived the night and Thomas survived the day today.
Part of me wants to end my update right there, but part of me wants to recount in a little more whole way how yesterday played out--and the writer wins.
After Thomas's best three days ever, he woke up on Saturday seeming "off." I began noticing clues, I shared them with nurses, I shared them with Chris. Instead of having about two hours of alertness first thing in the morning, Thomas was much sleepier all day. When he was awake and I'd try to involve him with his new Christmas toys, he would not interact. His left arm--the only one he could really move--was now too weak to lift. I tried to have him "squeeze my hand for yes" like we had been doing and he was too weak to squeeze it. He did not smile.
It all sounds so obvious that something was wrong now, but as it is playing out, subtle sign by subtle sign, I just wondered. His numbers on the monitor were rock solid beautiful, as they had been for so long. He was 11 whole days post-operative. What could be wrong?
I had just been on an extremely rare one-hour phone call here in PICU when I noticed the nurse say, "Thomas just said his first word!" I hung up the phone and rushed bedside because we'd been waiting a week of extubation for Thomas to speak. It turns out at 2:15, he had started bleeding and here it was 15 minutes later and the nurse had asked, "Are you hurting?" to which Thomas replied, "Yeah."
Over the next not-quite-two hours, Thomas bled out about 600 mL (= 2.5 cups from a five-year-old's body) from one surgical drain in particular. It would fill so fast, the nurse hardly had time to enter the latest number in her chart on the computer before I'd say, "It's full again." Thomas's blood pressure was plummeting. Because he had been off the ventilator a week, he was fully awake and sensate for this crisis for the first time.
There were six doctors in the room plus two nurses. They ordered not one but five units of blood products immediately without even waiting the half hour for his CBC labs to come back to reveal his hemoglobin crashing. Thomas had been doing so well that he had slowly been having points of access removed from his body such that he only had his port, his PermaCath, and one peripheral IV remaining. That was not enough access points for him.
Therefore, with Thomas fully awake, they had to insert an IV in his arm. His veins are not so hot anymore, so even with the ultrasound guiding the nurse, there was prolonged digging around with the needle while Thomas cried out in his froggy voice. Also, the PermaCath is considered 100% "belonging" to the Nephrology team for running the dialysis machine. Nothing else goes through it! So I knew what it meant when the M.D. said to stop dialysis and start pushing through the PermaCath, too.
Running blood takes time--about four hours to run packed red blood cells, about one hour to run platelets and fresh frozen plasma--but the team managed to push the first three units in only one hour. All the team filled up 100 cc blunt syringes with blood products, lined them all up like an assembly line, and began pushing them as fast as they could into all his points of access. At that point, I was sitting quietly out of the way on my little couch, knowing I did not want to delay them at all in saving Thomas. However, someone asked me please to get close and hold his hand to comfort him--since he was awake.
I had to ask someone to get me a chair because I discovered I was already too woozy to stand safely. I am no saint and am embarrassed to compare, but I felt the agony of Our Lady staying at the foot of the cross. My job was to calm my son, so I put my face in his face and rubbed his hand when every fiber in my being wanted to look away. I had to make my face calm and even smile gently, but my tears streaming down betrayed my heart. Thomas who had not spoken all week, cried out, "Ow! Ow! Ow!" unceasingly in his raspy voice for the hour-plus that felt like an eternity. I felt such raw desperation to get away from the emotional pain of being twelve inches in front of his face that I wished death would strike me down instead.
(Let me praise medical staff again: They are not robots; they are compassionate human beings. Yet they have to do what it takes to save a child, no matter if painful and frightening, and they cannot afford to collapse crying and wish to be mercy-killed. They do their jobs.)
The drain stopped outputting blood. His blood pressure rose and stabilized. One could have thought everything was okay, but the PICU staff knows better. In fact, we learned later that the tube of the drain had simply clogged and the bleeding was pooling inside.
With Thomas stabilized, we took him to an emergency CT Angiogram scan. I asked for Thomas to be sedated because he would be frightened, but they said they could not because the drugs would risk his blood pressure falling again. They asked me to walk down there with him to comfort him. I actually had to think about prudence because I was so dizzy and woozy: I did not want to faint and hit my head such that I was now their second patient, delaying the care Thomas needed. But how, how could I not walk with him to Golgatha? Just kill me and strike me dead, or I'm going to walk with him. So I held his little hand as we pushed his bed and giant IV pole through the maze of the hospital and I never let go. (I used my other hand to hold the bed rail in case I started to faint. Ha.) The Attending doctor (a gentle, grandfatherly type whom I love) escorted the two nurses and I, him carrying the kit to save Thomas if he coded on the way.
During the CT scan, we had to hold his two arms above his head. This little boy has been bedridden for more than five weeks, so his limbs are very tight and contracted. To have to raise his shoulders above his head must have been so painful. He looked vulnerable lying nakedy and without a blanket on the CT bed, one nurse pinning up one arm and me pinning up the other, as they took what felt like so many photos.
It turns out they could see him bleeding out live on the film.
We took Thomas back to the PICU for just about 30 minutes to get the Operating Room ready while Thomas's beloved surgeon Dr. B. raced in from home--again, not on call tonight, but always "on call in his heart" as I call it.
The nurse asked if I wanted to climb in bed with Thomas to snuggle, so I did, but, as I wrote in snatches yesterday, within about one minute he began vomiting up blood in my face, six inches away from his on the pillow. I can't walk this road, God. How can I walk this road? We cleaned up that blood, only then to adjust his cozy Christmas quilt and discover it was messy from the blood that was now exuding from his J Tube site and the various drain sites . . . anywhere blood could get out.
At that point, the nurse offered, "Do you want some time alone with him and to pray over him?" It is a phenomenon that the kindest words ever could be the most painful sword slaying through my heart and back out the other side. During the last nine emergency surgeries, no one has asked me to have alone time with my boy as if I'd never see him again.
I lost it, I collapsed to the ground, and ever-collected Katherine wept like a cry to heaven, like I would suffocate from grief. As I already wrote, I told God in my heart that I acknowledge that Thomas is in a state of grace, he is baptized and confirmed, and he would go straight to heaven if God chooses to take him. I accepted that God could take him to be a saint in heaven.
After they whisked him away, a nurse came in and said that my husband Chris had called our priest and he was authorized to enter the PICU and he was in route.
The surgery was successful, it stopped the bleeding, we remain mystified about why bleeding began in the first place. One theory is that the three suction drains left in Tom's abdomin since the previous surgery were too much pressure for too long and caused a rupture.
This has finally taken a toll on me. I was so dizzy and weak last evening that I had to ask for help (when I'd rather stick hot pokers in my eyes) for a nurse to walk me to and from the bathroom lest I fall. The sweet nurses brought me orange juice to raise my blood sugar. I always stand alert all the day long every time a doctor or staff comes in the room, but I had to humble myself and lay down on my sofa even while doctors spoke to me. I did not want to eat, but they insisted I eat and the kitchen was closed, so some angel went to a restaurant downstairs and bought me a meal, which I ate dutifully. I barely slept overnight. I was woozy with a buzzing feeling in my body all night and all today, a small headache in the background, that it finally occurred to me that this is what I have felt like when I've been in hypertensive crisis during pregnancy. I asked a nurse today to take my blood pressure and it was through the roof. The nurse consulted with the adult Emergency Department downstairs and they said they would not prescribe medicine based on one day's information anyway, nor did they want me waiting in an E.D. for six hours, so it was decided to get me to rest as much as possible today. They miraculously got me a Sleep Room during the day (they're normally unavailable till about 10:00 p.m. nightly) and I forced myself to leave Thomas and go nap on and off for five hours. I don't care about my stupid, broken-down shell of a body, but am only determined to get myself stronger because I'm one tool Thomas needs to get better. I will banish myself to the Sleep Room again overnight and I have a virtual doctor's appointment with my primary care tomorrow. My blood pressure keeps getting checked and it is very high.
Thomas has remained sedated today. They would have extubated him but he needs a PICC line put in for more access points. Since that procedure requires sedation, we're not going to extubate and then sedate him deeper. Interventional Radiology today got too busy with a Code Blue for some other patient that threw off their schedule, so Thomas's little procedure got pushed to Monday. After that, if he remains stable, he can be extubated. Meanwhile, he is a very swollen little guy again, several liters positive in fluid, because his blood pressure is not tolerating almost any fluid being taken off via dialysis.
Thomas's goals for overnight: Just. Don't. Bleed.
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