Duplicated on our CaringBridge site for permanent record here.
February 7, 2021, written by Mama
82 days in the hospital: 63 in PICU, 19 in the Oncology ward
Thomas enjoyed one full, glorious day graduated off of all IV medication, fully freed from his IV pole before it ended as almost felt inevitable. Just like I've mentioned in the past, there seems to be a pattern that within 48 hours of discontinuing his mega- and multiple IV antibiotics, he spikes a fever.
I've always been the most relaxed mama about fevers, but now a fever (maxing at 101.2 overnight before we medicated it--not even a high temp) means that we have doctors in the room at 5:30 a.m. and Thomas's surgeon being called at home at 6:00 a.m. to be informed ("because we run everything about Thomas by Dr. B----!" and they really mean it: everything, all the time). A fever means Thomas has bacterial and fungal cultures run and that new antibiotics are begun immediately. A fever means Thomas is sent for a CT scan. The rest of the world waits for weeks or months to get a CT scan for some diagnostic purpose, but all Thomas has to do is get a little fever and he's in the radiology lab within hours.
To back up a little, after the early morning frenzy because of Thomas's tiny temperature, we had a sweet morning. I made an appointment for us in the play room and took Thomas there for some arts and crafts.
I finished the seascape I began last week. If memory serves, I haven't painted anything since I was a little kid, so it was freeing to have the time and freedom to just try painting for sheer pleasure and as a method of passing the time without worrying about the outcome at all.
Our hour was up, so we headed back to the room where Thomas had to drink 100 mL of contrast dye, which is pretty yucky and almost made him vomit. He was such a brave, determined little boy, drinking all that liquid because the doctor said so.
Thomas has had so many CTs, probably 20. Yes, he just had two CT scans last weekend . . . and yes, he has one scheduled for five days from now. Yet it was urgent that they check for infected pockets of fluid in his peritoneal cavity: a likely post-operative complication. I'm very, very familiar with the CT drill.
A nurse escorted us down to Radiology at noon, but then she left me there alone. Now Thomas is so stable that they don't even leave me with a nurse. In the end, I was distressed and upset that I had no nurse with me because I had to fully advocate in a confusing situation for Thomas by myself.
I am going to try to tell this story in an abbreviated way instead of how it played out so slowly. Upon arriving at Radiology, it became clear there was some significant confusion until we figured out that what had been intended as an Abdominal CT was now also including a CT-Angiogram. Thomas has a regular port, not a "power port," so he cannot receive the machine-injected contrast dye necessary for a good CT-Angiogram. In the past, a radiologist has always manually pushed the contrast dye into his port, but, apparently, those CT-Angiograms were always sub-par images and now our surgeon was insisting he needed a crystal clear picture to determine once and for all if there was a surgical cause to these fevers.
That is a laudable goal I support, except that Thomas did not have proper access, as they call it, and now I was being asked to let them put in a peripheral IV on my five-year-old without EMLA cream (because there wasn't time, as the contrast dye would run out of his system by then . . . and he'd have to have another dose . . . which I was declining because it strains his kidneys so badly). All of this access should have been planned for ahead of time on the 11th floor, but nobody from Heme-Onc knew about the change in orders.
After numerous phone calls and consultations, and after getting Dr. B---- himself on the phone, I consented. First the Radiologist ran an IV and my boy was so brave and quiet, but after getting it in, she tested it and knew it wouldn't withstand the pressure of the contrast dye. She removed it. Thomas's veins are so damaged from chemotherapy.
Just moving Thomas's body can hurt him and it is not at all like one would pick up a typical five-year-old. I had already transferred my delicate boy from his chair to the CT bed and now transferred him back to his chair to go to a pediatric waiting room, transferred him onto its bed, where we waited for the Vascular Team to come with its ultrasound machine for placing a line. The Vascular Team lady did an excellent job and, despite his fear, Thomas whimpered only one time as she placed an IV.
I transferred him back to the chair, went back to the CT room where HE HAD TO DRINK MORE CONTRAST DYE, transferred back to the table, and did the darn scan.
I drew upon everything within myself throughout this whole procedure to educate myself on what was happening, advocate for my boy, refuse to consent at certain points (it takes courage to say, "I won't consent to that"!), and all the while be communicating my very strong defensive feelings to the adults while remaining calm in front of my tiny boy so he would not feel afraid. It's a lot to ask, so when he was finally deep in the CT tube and I was wearing lead and holding his hand the whole time, I leaned against the machine and just cried because he couldn't see me.
When one time I asked our priest to talk to me about suffering and how a Catholic is supposed to view the suffering of a little innocent one, he said that while Thomas does not yet understand "offering it up," I can offer up his suffering on his behalf and ask God to accept it back and to do good with it. So I cried on the CT machine and offered up Thomas's suffering for two specific prayer requests some mothers have been asking of me.
We were gone two and a half hours for what should have been a 10-minute scan.
I came back to the room, took care of my boy's neglected body care, and got him food immediately, while his nurses got him all the medications he was now hours delayed on.
Even then, Thomas's big day wasn't done: Because of the mystery fever, he now had to have a COVID test done (that actually tests for 19 respiratory viruses, not just COVID). (Until the results are back, we are now on "droplet precaution," so I'm not allowed to leave our room.) And today is Sunday, so it's his once weekly day to have his port needle removed and then a new one-inch needle inserted into his chest. Last week a nurse had put something on his skin that caused a rash to break out, so he was in pain and crying during the port procedure.
Finally, Thomas and I conversed more about his stomach reconstruction over our dinner. He's been asking questions and I've been trying to converse with him in a simplistic, age-appropriate way, keeping very calm because this subject needs to be one he can approach repeatedly forever. Well, tonight some confusion became apparent and for the first time Thomas asked and I clarified that his stomach is never going to be fixed or grow back. It turns out that all this time, Thomas thought the surgeons or medicine or something was going to "fix" his stomach and he would all go back to normal. When new understanding flickered across his face, his lip quivered and then he fell into my arms weeping in anguish. I rocked him and loved him and told him it was okay to have sad feelings, and that Mama and Daddy have felt sad feelings about this a lot. We conversed more and then he wiped his tears and said, "Please read me more Bible stories, Mama."
None of this was life or death today, yet it made my spirit heavy. I look around and hardly know how we got here that this is now normal daily life for my five-year-old: that is so young. To go to a big scary CT room with strangers, to have two IVs placed, to go without food for almost 24 hours (didn't complain once), to have a COVID test, and have a one-inch needle in his chest . . . that's our boy's normal right now. He was like a little saint with how brave he was, how he had patience, longsuffering, and fortitude.
I had planned to spend the evening and overnight at home tonight and the warm company of our other children was something I was really looking forward to. For various reasons, it did not play out that way and I don't foresee being able to go home in the next couple of days because of our schedule. I can't even plan something that basic. I am trying so hard lately to embrace each moment, each hour, and just think, how can I be holy in this moment? I have to try so hard because this does not come naturally to me. I want to plan, I try to plan, and I can't even plan. I have almost no idea what the next moments, hours, or day are going to involve. All I can try is to live God's will just for this minute.
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