Ahead of Schedule

Or so we hope.

On the engraftment front, Jennings continued the steady climb that had begun last weekend. His ANC jumped above 500 for the first time on Tuesday, Day +12. From there, it went to 843, 1482, then 2800 (which is actually in the “normal” range). A solid rebound for his counts. His platelets have recovered as well and we pray that he has received his last blood transfusion.

With engraftment trending in the right direction, we shifted the focus towards weaning off some of the support he’s been on. The wean off of oxygen support was a miraculous answer to prayer. He had been on full-time oxygen support, bouncing around how much flow he needed. It was not much during the day, but would creep back up while he slept. From our previous experience with oxygen following an out-of-control immune response months after his first transplant, we were concerned he was in for a long road to breathing normally on room air.

But, during the early morning hours on Wednesday, he pulled his mask off during his sleep. This had been a common occurrence, resulting in an almost immediate drop in O₂ and a sounding of the alarm on his telemetry monitor. Lauren even started wishing me “sweet beeping dreams” when staying with him. That night, however, was different. The mask stayed off and his saturation level stayed in the mid 90s. His nurse left it off and just monitored him. By 9a, when he finally woke up, his level jumped into the upper 90s and held all day. Just like that he kicked the habit and said good riddance to that mask. Finally, he could “do his lovey” again.

Good riddance to some of the nightly beeping too. Sometimes the beeping resulted from the sensor coming off of his toe. That happened Tuesday morning and his night nurse, trying to do a good deed, popped in his room to reattach it on his way out the door from his shift. What he hoped would be a five second favor for the day shift nurse turned into a five minute saga with Jennings looking to have a little fun. Jennings dove under the covers as soon as Mike came in the door and refused to come out. When Mike pleaded that he just needed one of his toes for two seconds, Jennings replied that he no longer had any toes. “What happened to your toes?” asked Mike. “Last time, my grandmudder cut dem all off.” 🤷‍♂️

The Benadryl + Ativan and Fentanyl weans have been a different story. We’ve tapered the B+A pretty slowly over the entire week and today, Saturday, was the last of it. Whether it’s all the drip or a combination of factors, his nausea has increased this week. It’s not extremely acute, but seems to be pretty constant. Like a dull discomfort that keeps him from wanting to eat or drink. He had a brief moment with Lauren earlier in the week, while the drip was still pretty high, where he looked over at her randomly and said, “I feel better.” After that, he asked if he could have something to eat, which turned out to be rushing it a bit. His choice was pretzels and hummus of all things and he managed the keep the few he ate down for only a couple hours. Since then, the drip has decreased, the nausea has increased, and he has had zero desire for food.

On the pain med front, despite our best efforts, he still experienced fairly extreme withdrawal symptoms. We weaned the Fentanyl very slowly to a point, but got to a dose where it could not be further reduced through the pump. There were still probably four “steps” down for him from that point. So, the Fentanyl was discontinued entirely on Wednesday and switched over to scheduled morphine. Unfortunately, that transition did not go smoothly.

That night around bedtime, he lost it. Lauren said he began demanding candy, then yelling about why the hospital does not have a gumball machine. Inconceivable! She sent me the GIFs above in the heat of the moment. He yelled and screamed at anyone who came in the room. Screamed, “I hate you, I hate you!” over and over at Lauren. They gave him Benadryl to try to help calm him down and he eventually settled an hour or so later. After all the fuel was burned, he called her back into his room and said, “I’m sowwy I yelled.” He was not himself; we knew it, and he did too.

This is the price of medical intervention. It comes with side effects, trade-offs, risk / benefit. That’s an easily forgettable reality for all of us, but sometimes, when it slaps you in the face in the form of a screaming 5-year-old, you remember.

With these “expected” occurrences being the only difficulties encountered this week, things began looking up for an earlier than anticipated discharge. By Thursday, the team was thinking Sunday would be a possibility. As I write this update on Saturday night, it is still not 100% confirmed.

Yes, I do enjoy spontaneity, but they are not keeping it from me for fun. It’s because, after several days of no fevers, Jennings decided to spike one on Friday right around lunchtime. 101.3. The nurse, on her own, checked it three times before she even told me. He was acting totally normal and it seemed very much out of the blue. So, another “first fever.” Bring on the cultures, the antibiotics, and the poke.

So far, nothing has grown in the cultures, but he spiked again today around the same time. Both days, the fevers resolved themselves over several hours without Tylenol. Somewhat of a mystery as to what’s behind them…unlikely that it’s engraftment related at this point, and not bacterial (so far).

Fever or no fever, we are ready. Ready to say bye to favorite nurses, that view, the playmat being the closest thing to a playroom, and Jennings laying in the same bed almost all day. As long as he doesn’t spike again tomorrow, we are probably making a break for it.

It will be great to be reunited as a family. We usually make a big, family to-do over birthdays, but Lauren and Caroline celebrated her 8th on Friday. I’m told it was a smashing success (👇), but it will be great to be together for Easter and then Jennings’s 6th birthday coming up.

Please pray that this transition goes smoothly. There will be a lot to stay on top of with his med schedule, his nausea, tube feeds, his frailty, and his immunocompromised state. His energy level is way down and will be for a while. Walking one lap around the BMT floor is about all he can handle. He almost gets winded and starts to complain that his legs are getting tired. So being out of the hospital will be great, but sometimes his mind will get ahead of his body.

We will take it one day at a time. Lauren and the kids were jamming to “Walk on Water” by Elevation Worship today. Caroline was asking about some of the lyrics and so Lauren asked her what she thought it meant to put one foot in front of the other like the song says. She said, “It means to take one step at a time in your problems.” Smart girl.

We will take one step tomorrow and though we are tempted to bend towards anxiety and trying to guess what future steps might look like, we remind ourselves of Matthew 6:34. “Therefore do not be anxious for tomorrow, for tomorrow will be anxious for itself. Sufficient for the day is its own trouble.”

God is good to have brought him this far.

#allinforjennings

PS- bonus video below…left it out of last post by mistake. Jennings - in the throws of engraftment, with the oxygen tube taped to his shirt, running a fever, no pants - turns music therapy back on the therapist using drumsticks to conduct her like a boss.