Day 45: Pain Is Being Managed

Duplicated from our CaringBridge site for permanent record here.

January 1, 2021, written by Mama

Thomas was more comfortable today.

His heart rate was in the 120s and 130s (still higher than his normal, but safe). His blood pressure was around the 1-teens over 60s and 70s, which was beautiful, and they were even able to come entirely off of his Nicardipine drip (to lower his hypertension). When deeply asleep overnight, his numbers were even more ideal (75 HR and 100/55 BP as I finish typing this). His blood labs are also fantastic. It's amazing how good one's numbers look when one is not in excruciating pain.

The pocket of abdominal fluid tested gram positive within an hour, so there is probably some kind of infection there and we await the cultures to grow the bad critters so we can identify them. In the meanwhile, Thomas is on various new antibiotics. 

Why did Thomas's body react so strongly to this pocket of fluid? Why did he have a big immune response, his inflammation markers spiking and possibly this SIRS response going on? Was it because it is infected fluid, unlike the other pockets of fluid which had not been?

The pleural effusion fluid behind his lungs continues to be produced by the body. It is not a case of just removing a set pocket of fluid and now we are all done with this situation. About 200 cc was released during surgery, but something like 500 cc more has drained since surgery just from the left lung. That is a lot in a little five-year-old body. I look at it sitting in the drain and think about the era prior to any modern medicine: I imagine that this little child would have looked pretty stable on New Year's Eve day and then would have devolved very rapidly in the afternoon and overnight, mysteriously being in incredible pain and with greatly labored breathing before his lungs would have collapsed--not that caregivers of that era would have known what was going on inside, especially since his lungs were dry and his coughs brought up nothing productive--and he would have suffocated to death, maybe by the dawn of the New Year. Dark thoughts from PICU.

Meanwhile, the right chest tube is not draining well, yet we know from x ray and then ultrasound that Thomas does have a significant fluid pocket back there which must be dealt with. The doctor did a  procedure this afternoon to inject TPA (super interesting description here) into the cavity behind Thomas's lungs to break up or dissolved the pleural effusion fluid, which has by now likely become thick and unable to exit via the drain. Unfortunately, the procedure did not result in marked difference, so Saturday will be a day that likely the next level of intervention will occur because we simply have to get that fluid off his lungs: second chest tube on that side? large chest tube?

Thomas's pain control is much improved, both because the source of increasing pain is being fixed and the doctors raising the basal rates on his drips. The nurse was very careful on Friday to cluster Thomas's body care around times he was due for more medicine (as opposed to times when he has run out of medication options and has to wait it out). I also asked for the charge nurse to put a sign on our door requiring any of the zillion visitors we have to check with the RN first: I'd seen too many times what would happen when one of the stream of MDs who comes in would assess Thomas, that wakes him and he starts crying in pain, and we have no PRNs left at our disposal for the next hour. I embraced my inner Mama Bear and requested no more checking on him unless he is awake or unless it is truly time-sensitive (which some of them are, of course). This has made all the difference.

I am loving being invited to join in Thomas's bodily care to some degree now that his body is stronger than in the earliest weeks. Also, frankly, he always had two full-time nurses before because he was on dialysis, but now it's just one nurse and me, so I'm useful! I get to help change his diapers, rub on his lotion and gently stretch his limbs, and offer a pair of hands for changing bedding. Also, Thomas now loves his receiving sips of water from his green sponges on a stick and he requests it by making an open-mouthed baby bird face nearly endlessly when he is awake. On Friday when I would offer to Thomas that I could read him a book or let him watch a TV show, he would shake his head NO.  Water is his comfort, so I give water, rub his hands, and rub his head: that's what Mama does.