Hallelujah

Praise the Lord. Jennings and his cough improved over the weekend and it was almost gone by Monday when both of the procedures, the BMA and line removal, were scheduled. We pulled in the Jude feeling hopeful, bright and early at 7a Monday morning. It wasn’t until about 10:30a that we got the all clear and at least a couple of those hours were full of anxious waiting. Before the NP would even look at him we had to wait for labs to come back. Then, she examined, listened to him worrisomely closely, and then sent the nurse in with a pulse ox to check his oxygen. After that, they checked his temperature again. Needless to say, I was gearing up for a….let’s say, discussion. I’ve seen the kid sedated more times than I can count and he was in, by no means, the worse shape he’s ever been. I’m not one fore reckless risk, but perfect is the enemy of good enough.

Fortunately, he was cleared and the critical path to getting released to a prep room was his COVID result. This was the one part of the screening process that was done the day before for crying out loud. I realized, on Sunday, about 30 minutes after the scheduled appointment time passed that we were supposed to be there for the swab. So we drug ourselves away from the final round of the US Open just to go get a Q-tip stuck up his nose and, despite all that effort, that result ended up holding us up for surgery. 🤦‍♂️

So, after all those shenanigans, I put on a bunny suit, went into the OR with J, and hopefully watched him be put to sleep for the last time for at least a year. Being without Jennings, I was free to roam about the hospital without an escort donned in full PPE. I went to the pharmacy to pick up meds and then over to the Caf to get the Froot Loops. I spent the rest of the time in the surgical waiting room, awash with nostalgia. The last time I had been in that room was just shy of three years ago. It was for the exact same procedure. And we had the exact same prayer. Lord, let this be it - no more reasons to ever have a central line.

The OR suite is on the same floor as the BMT unit, along with the ICU. The waiting room looks out into a courtyard filled with art perfect for a children’s hospital 👇

Every day that Jennings spent inpatient, we walked by this display, usually just out to the elevator bank to head to the cafeteria or down to swap out caregivers. I thought back to the now two times he has been shepherded through a bone marrow transplant in this very place, teetering on the edge of life, experiencing the outer limits of modern medicine. Each time, he has been the beneficiary of some of the greatest expertise in the field and has been cared for so well. We are thankful for this place and comforted by this place.

Jennings woke up well and fairly quickly, already sitting up by the time I got to the recovery bay. The PACU nurse who had to escort us out of the hospital was kind enough to sit with J outside while he knocked out his post-anesthesia Fwoot Loops while I ran back up to B clinic. They had called and asked that I come back to get some chimerism test kits to bring home. I was unsure what I was getting myself into, but was relieved to see “Open by Medical Personnel Only” in bold letters on each box. The DIY version would have been exceeding my nursing skills.

So, now we wait for results. We will hopefully have MRD later today and chimerism and genetics later in the week. Please pray for these. We plan to pack up the FJ and head east before dawn tomorrow. Lauren and I both are beyond ready for that to happen. She has been pulling single-mom duty to three kids and I’ve been one-on-one with a six-year-old for ten days now. The Welcome Home party has been successfully rescheduled for tomorrow and, if I-40 cooperates, will be ready to kickoff right around the time we pull in.

Here’s J…minus central line. And happy to show it off.

You can pray for us as we transition home, Jennings especially. Mid-last week, at the peak of the virus symptoms, Lauren and I were both having flashbacks to the last time we brought him home. When we came home the first time around, Jennings was at a very low point. Seemingly bottoming out right after we arrived back in Charlotte. He had all kinds of issues; he was not eating, had no energy, and had unexplained and at times debilitating muscle pain. Ever since this virus has taken hold, he has not wanted to eat much and complains that his tummy hurts more often. Then, last Wednesday night, we were driving home and he threw up all over the backseat of the car. When we got home, he had some diarrhea. He has had neither of these symptoms for at least six weeks now. You can pray that all of this is related directly to the virus and not indirectly to it through GVHD. Aimee asked me last week to watch out for this very thing. A respiratory virus, or any malady that incites the immune system to fight, can trigger GVHD. The GVHD often occurs in the primary effected area. But not always. The gut is a prime target for GVHD, so these symptoms, and what Jennings went through with his gut during round #1, are worrisome. I was explaining to him in the car why it was going to be very important for him to communicate honestly with us how is body is feeling. He said, “Dad, I’m a guy dat gets chemo. Don’t you know dat kids dat get chemo fwhoa up?” Hopefully, it is just the virus and resolves quickly.

Thank you for continuing to follow and pray. Your prayers are being answered. While that was happening, here’s how we passed the week:

Clockwise from top left: We finally made it back to the top of the pyramid this trip (L is not a fan)…that’s J looking out over the St. Jude campus (all the pink) from afar. The Uhual after I finished my game of packing Tetris…we seem to have acquired some things while in Memphis. J enthusiastically participating in a virtual LEGO camp. My moving buddy behind the wheel.

Meanwhile on the home front,

Reuniting with the long, lost trampoline…coincidentally a COVID-inspired present to Jennings & Caroline on Brother-Sister Day in April 2020 (that was a day where we celebrated his first transplant and the day he got his sister’s cells). Smally in the corner still rocking the dress-up game. Henry plowing through some ribs, apparently missing Memphis. #meateater #mealticket

On our way to the top of the pyramid last Friday, we made the obligatory cruise through the toy section. The vast majority of his toys left for Charlotte in a Uhaul that morning, so I told him he could pick something out. Before we left the house, he knew what he was going to get. Sure enough, he grabbed the bow & arrow set and never looked back. It’s rated 14+ so I had told him before that I thought he would “shoot his eye out,” or something lame to that effect, and hadn’t let him get it. Well, he sure showed me…and the Harbor Town birds. Check out this video…this is unedited. I just used the slo-mo feature on my phone and the Lord ordained the rest.

Yes, he actually hit the bird.

“I will extol you, my God and my King, and bless your name forever and ever. Every day I will bless you and praise your name forever and ever. Great is the Lord, and greatly to be praised, and his greatness is unsearchable.” Ps 145:1-3

This is true everyday…easier to say, though, on some.

#allinforjennings