Crises Averted
Here we are at Day +11. Double digits. Woohoo. We’ve been counting days and praying. Jennings, meanwhile, has been battling through the trenches of transplant. The early engraftment period usually holds some of the toughest days and this one proved no different.
After the last update, his fevers slowly started to inch back up. They had been consistently in the high 99s, which is technically not even a “true” fever, but by Thursday were consistently hitting the high 100s. More concerning than the fevers, however, was that he woke up Thursday morning with oxygen saturation levels hovering around 90%. Typically this should be 98-100% and the lungs are a vital, delicate organ, so the team wasted no time in putting him on oxygen support. It started with just a tube blowing O₂ in the general direction of his face and this boosted him back into the mid-90s.
The oxygen / fever combo earned him a busy, annoying day. He had all kinds of virus panels pulled from his line, followed by a trip back down to imaging to x-ray his lungs, then blood cultures drawn from his line, and then….another poke. Since he had several days with (*technically*) no fever, he was due for more line cultures upon this “new” fever. We used lidocaine to numb the spot this time and he was generally too tired to put up much of a fight, so it went very well. He was very anxious, but tapped out on trying to scream or yell his way through it. In a typical thumbing of the nose afterwards, he told us all that the lidocaine doesn’t work and that he doesn’t want it again. 😂
During all of this fun, we got word that he tested positive for C diff. Great. While pretty typical for someone of his age in his condition and not too worrisome, it is an minor annoyance. For one, it lands him on isolation where the nurses start a race to see who can run through the most disposable paper gowns. Secondly, it means he started back on Vanc to make sure it stays in check. It wasn’t more than 2 or 3 days earlier that he had been on this same antibiotic from his last infection.
Thursday night saw his fevers jump up to the high 101s. He also developed a pronounced rash over most of his body. All of these signs taken together, along with him being Day +7, began to point towards early engraftment. By that night, Jennings was fully in the trenches and looking it. His weight was down to about 38.5 lbs. At relapse back in November, he was right around 43 lbs. He entered transplant somewhere in the middle. Four and half pounds doesn’t seem like much, but for him, it is 10% of his bodyweight. In addition to the skinniness, his lips were severely cracked and peeling. When he spoke, his voice was slow and shaky, almost labored in getting the words out. His little, skinny legs would tremble uncontrollably when he stood. He was hurting in lots of ways, but refused to let on, not even acknowledging any of these developments.
The oxygen issues increased overnight into Friday morning. The tube proved insufficient and much too difficult to keep in front of his face as he tossed and turned in restless, fever-ridden sleep. By the time I got up Friday, we had an oxygen mask successfully strapped on while he continued to sleep. Labs arrived shortly after and confirmed: engraftment had begun! It was great to get this news as it explained most of his symptoms and signaled that things were unfolding according to plan.
Top left: cramming Xbox while the energy is there. Top right: Re-purposing the oxygen tube that had lost effectiveness for its intended use…his dryuh delivering some cool, fwesh air. Bottom left: never one to turn down PT with Jamie no matter how rough of a day it is…it was all he could do to stand (with help, in the bed) and play over-the-door basketball for about 5 minutes. Bottom right: sleeping through an ultrasound circa 10am on Saturday morning…explainer to follow.
Not long after getting the good news on engraftment Friday morning, the room got crowded quick. He was back on fairly regular sepsis huddles due to the combination of O₂ issues, fevers, and elevated heart rate. That team came in for the huddle as the rounding team entered as well. They gave us another little scare. Dr. Gottschalk, head of BMT, listened to him with a stethoscope…a rare occurrence as this is a task usually left to the NPs or fellows. He looked at his nurse and the nurse lead for the floor, “Watch him closely.” During this, I noticed one of the other physicians looking at the telemetry monitor and talking intently with the nurse. “If we have to continue to increase the O₂ flow, he will likely need the ICU.” Then they all left. Good talk.
Fortunately, Friday proved to be manageable from an O₂ perspective. He needed the mask at all times, but did not need increased flows to maintain his saturation. His fevers continued following the IV Tylenol cycle like clockwork. Fever spike close to 102, IV Tylenol, fever drops into 99s, three hours later fever spikes into 101s…repeat-o every four hours.
Similar to C diff the day before, we got more fun news on Friday. He tested positive for rhino/enterovirus. Essentially just a common cold. He was on antivirals and exhibited no symptoms, so really it just added fuel to the “watch him closely” fire and increased the mountain he must climb to get off of isolation precautions.
After all of the talk on Friday, I was worried heading into Friday night. Maintaining O₂ levels is always a challenge while sleeping and I was not in the mood for any late night transfers. He had been on about 2L per minute of oxygen ever since requiring support and sure enough, had to be bumped up to three early Friday night. By God’s grace, that was the only bump of the night and he held strong there for the rest of the night. ICU threat extinguished.
I should have realized it would be a non-event after his pre-bedtime antics. Side effects of the fevers and the rash are sweating and itching. These do not play well with a central line dressing and during bath wipes Friday evening, Jennings grabbed his chest and exclaimed, “My sticker!” I looked up and it had pulled almost completely off exposing the penetration site. That got him an unscheduled sticker change Friday night around 8p. He did really well and then the respiratory therapist came in right after for his last treatment before bed. Jennings, all juiced up from the sticker change, got a little spicy with the guy. He hid under all his blankets, refusing to come out until a password was given. I tried my best to help by offering suggestions - name dinosaurs, try superheroes, movie characters. No luck. The RT eventually gave up and just stuck the breathing treatment mask, spewing saline vapor, under the blanket figuring that was the best he could do. The answer to the password question, you ask? Bobby Flay. As in “Beat Bobby Flay,” which we got into the habit of watching during dinner when it was just him and me in Memphis back in January. 🤷♂️
Saturday morning brought the next potential crisis. His weight, in kilograms, went from 17.5 Friday morning, to 17.9 Friday night, to 18.2 Saturday morning. This, mind you, is a kid with a feeding tube that delivers only about 50% of his caloric need for the day. He had also not peed since about 6:30p Friday. The team grew increasingly concerned about fluid retention, making me get him up from sleep to try at 2:30a and again at 9:30a. Both times, Jennings was dead to the world and could not go. When Dr. Gottschalk rounded around 10a on Saturday, he was talking about a cath. They attempted an “in and out” catheter on him during his first transplant. It failed and that moment is the defining moment in my head when I think about all of the horrors of transplant.
They did an ultrasound (see above) and confirmed that the fluid was at least where it was supposed to be: all pent up in his bladder. Gottschalk, seeing my reaction to the cath, agreed to give him an hour or so to go on his own. As soon as they left the room, I woke him up and put him on the potty. Success! He peed and emptied almost the exact amount of fluid that the ultrasound had estimated was sitting inside.
Since Saturday afternoon, the engraftment syndrome has slowly stabilized and is showing signs of tapering. His fevers are persisting, but are manageable. He had another one this morning. He is still on an oxygen mask, but we are working towards the wean. That will be a slow process, probably. His energy level remains way down, sleeping some days until mid-morning, napping intermittently, and not being able to “do” much while awake. All of his body’s energy is going towards one purpose right now: engrafting, growing new blood cells from the ground up. We’ve also started to wean the Fentanyl drip ever so slowly. We are doing this with an abundance of caution, again out of a traumatic experience from Round 1 where he experienced a full day of withdrawal symptoms from the opiate. Watching a then 3-year-old withdraw from a brief, but real opium addiction is not something we care to repeat.
As engraftment continued, his time over the weekend with Mommy looked like this 👇
Clockwise from top left: the accessories of transplant - feeding tube, central line, and telemetry leads…notice the last of the thiotepa burns on his ear. Mommy’s finished product, a Hidden Sides set built mostly while Jennings slept on the job. J enjoying a few bites of popsicle, which is what he says he will eat for breakfast, lunch, and dinner until the pwobwem is gone (the NG tube). Naptime…none of the attractions on the bedside table can overcome the energy-suck of transplant.
As always, thanks for reading. His ANC trend over the past several days of engraftment has been 10, 10, 20, 180. Pray that it continues to rise. He will be considered fully engrafted after a couple days over 500, and rising. Those neutrophils are crucial to him starting to feel a little bit better, and engraftment period is essential to the transplant’s success.
You can also pray
that he avoids any early signs of graft-versus-host disease (GVHD); acute GVHD will be a risk for the next 90 days or so.
that the medication and oxygen weans will continue and be smooth, getting off of all of the support is a prerequisite to discharge.
speaking of discharge, that he will be “home” by Easter…that is the goal we are praying towards and as we sit here today, it is conceivably within reach.
that the birthday girl feels celebrated on Friday…big sis Caroline turns 8!
Her birthday poster for school
“Be merciful to me, O God, be merciful to me, for in you my soul takes refuge; in the shadow of your wings I will take refuge, till the storms of destruction pass by.” Ps 57:1
#allinforjennings