It has been an exceedingly busy overnight and morning . . .
SIRS Response Again . . . Just a Little
Throughout Wednesday, I had been noticing some concerning symptoms that could be consistent with a systemic inflammatory response syndrome (SIRS). Thomas became puffier and puffier throughout the day in his face, hands (getting harder to make a fist), feet, and abdomen. Also, his urine output dropped from 200 mL to 125 to 50 by end of day shift. in a day.
I had asked questions throughout the day, but a couple of hours before shift change told the staff I really wanted this addressed, given that a SIRS response caused by his initial Nov. 18 surgery is what caused the cascade of SIRS to coagulopathy to lack of profusion to organs to organ necrosis and removal.
I wasn't being paranoid, nor was I going to sit by and watch these symptoms starting without calling attention to it. How am I to know what is a "normal" degree of SIRS and what is headed toward life-threatening SIRS known as septic shock?
The wonderful nurse did a thorough, and I mean thorough, exam. Weighing Thomas revealed he had gained 3 kg (6.6 lbs). Surgery and Nephrology got involved immediately, blood labs were drawn within 20 minutes, and a doctor was bedside within 30 minutes. Both Thomas's antihypertensive medication and one of his pain medications (Toradol) were suspended because both are hard on the kidneys and we need his kidneys working well to remove this extra fluid.
The overnight was quite busy, so I'm running on almost no sleep and Thomas is running on snatches of sleep. The surgeons visited us three times overnight, and the nurses came in enough times that I lost count, and not just for a silent five-minute check of vitals, but for lengthy exams and tasks that required us to be awake. Because Thomas's Toradol was removed, he "fell behind" on the pain and woke up crying loudly, his heart rate in the 170s and oxygen falling with a fast respiratory rate. He rated his pain a "10" until we could get morphine into him.
Thomas's labs showed he does not have kidney damage at this time (good news!), so he was given Lasix to help remove some of the fluid. Thomas's liver labs (ALT and AST) have increased exponentially by 13x since surgery. Thomas's serum glucose has jumped from 80s-90s for the prior 48 hours to above 200 (even though he is NPO), which the surgeon says is a response to surgery. Today Thomas did begin experiencing a temperature creeping close to a true fever; we don't really know how high it would go because he is getting Tylenol every four hours. His lungs still sound good, yet his O2 stats spent the afternoon hanging out around 94-96% instead of his typical 100%.
Dr. B---- does confirm that this is a SIRS response (which is not at all what Mom and Dad want to hear), but he says this is within the realm of anticipated and acceptable after this magnitude of surgery, and that he thinks it can be managed with Lasix and maybe later albumin. Chris and I are not panicking, but we are also not relaxed: maybe the right state of mind is vigilant?
Clinically, Thomas currently looks good. He is talking quietly, which is better than refusing to talk all of yesterday, and he enjoyed playing board games for more than two hours with Child Life. I have learned over this year how valuable it is to doctors when a patient "looks good clinically."
Bandages, Bandages Everywhere
Meanwhile, over the course of the morning, Thomas had the bandage changed on his central venous line. This is a sterile procedure and I think four staff participated. Simultaneously, a nursing professor and her student were in the room, talking and teaching. And then in walked the whole surgical team to round on Thomas, who was on the bed a little bit scared and fussing for his Mama.
There are nine extra people in our room and I'm supposed to pay attention to all of them!
Anesthesia followed fast behind, as Thomas's epidural has been leaking this entire time, which means it almost assuredly was not providing adequate pain control. They had already re-covered the bandage once, and this time were entirely replacing it (another sterile procedure). However, the anesthesiologist said it appeared to be leaking so much that if we saw any more leakage after his repair, he would need simply to pull the epidural. This will mean Thomas has to receive some heavier narcotics via IV to manage pain for the upcoming days.
Starting Feeds
Thomas began trophic tube feeds: "the practice of feeding minute volumes of enteral feeds in order to stimulate the development of the immature gastrointestinal tract." He started off at 5 mL/hour (this food all south of any of the surgical work), but felt nausea and pain three hours later, so we stopped the feeds for the day. He may just not quite be ready yet.
Plans
Tomorrow should involve improvement because the epidural will be removed, allowing Thomas more mobility. Moving around should truly help with Thomas's bowels waking up and his lungs fully oxygenating. You can hardly believe how bad it is for a body to lie in bed.
We enjoyed numerous fun visitors today . . . Miss Lisa from Palliative Care (the sticker lady!), Miss Anneliese from Music Therapy, the Child Life Therapist from Floor 9, one of the Nephrologists who take care of Thomas in PIKU and confessed she was really mostly stopping by on a social visit. Plus Daddy visited Thomas! Thomas also requested to do school with me and to paint.
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