Transitions
I mentioned last time about the busy couple of days that lay ahead. It wasn’t until Wednesday morning trying to get everyone breakfasted and dressed for the day that the full weight of that sunk in. It’s been wide open for sure.
Wednesday was our last morning waking up all together for the next 5-6 weeks. Made us especially thankful that we took Tuesday to enjoy the good MRD news and not let our Mondays ruin our Sundays.
We all took Lauren and Jennings to be admitted on Wednesday after a long day in clinic, school, packing, etc.
The goodbye at the main drop off loop was hard, especially after having watched him not 15 minutes earlier run around outside the house on Mud Island. He was running, jumping, and dancing all in combination as he does. And he was completely oblivious to the fact that it was the last time for a long while. Before he is outside again in the fresh air, feeling the sunshine he and Caroline will both tick another year older, spring will have sprung, and his body will have been taken to the brink.
I am happy to report that we are now fully relocated to Sean’s House on Mud Island. Lee and Dave are happily back in their home probably wondering how four little people can inflict so much wear & tear in so little time.
In between school drop-offs and pick-ups, I managed to get all of our stuff moved over with the help of a new friend. One who agreed to help with his truck on his birthday. We spent our first night there on Thursday (well, 2/3 of us did) amidst pile of boxes and bins. We at least had a full refrigerator and full bellies thanks to our Memphis family. I call them family as they continue to truly exemplify what it means to be the body of Christ.
Emily started with us as planned on Wednesday, though that was probably a weird first day for her. We were still in Lee & Dave’s so she couldn’t get a feel for where things are, etc. Those of you who bet against us can go ahead and square up now as she did in fact come back on Friday. Thank you, Jesus. That allowed me to get all of the boxes at least in the general proximity of where I thought their contents might go. After that, L and I successfully completed the first switch out at the hospital. We spent about 3 or 4 minutes downloading info…meds, what he’s eaten, general demeanor, me trying to set the stage for the disaster of a house she would walk into.
Jennings is doing great so far. He got a sweet room with a view of Memphis’s (in)famous pyramid…originally a basketball arena, now a Bass Pro Shop (yes, really).
He is officially on Day -12 and got his last dose of Rabbit ATG today. Everyone, nurses, docs, NPs, is quite surprised at how well he has tolerated it. Most patients experience some kind of reaction, generally spiking a fever. Fevers are almost inevitable up here, but we are praying they might stay away. Every “new” fever (new is considered a fever after a fever-free 72 hours) results in a needle stick to draw labs directly out of his arm. With the fragility of transplant kids, they do not waste anytime in trying to identify the root cause of the fever. With a central line, there is always a chance that the line itself is infected, so it is safest to test the blood from another location to see if there is an infection outside of the line circulating in the blood. So far, no reactions and no fevers. The worst of it is that he has to be tethered to the telemetry monitor for the entire 6-hour infusion, limiting him basically to the bed and he has to be pre-medicated with Benadryl & Tylenol, zapping his energy.
We are all adjusting and transitioning to inpatient life. He has been bored and is re-learning how to occupy the time. When you spend 24 hours a day in the same four walls, LEGO, reading books, even the iPad only take you so far. Right now, he is experimenting with the limits of his bed’s automated movements. Just a 5-year-old playing with a $20k piece of equipment. One aspect that did not take anytime to adjust was his kingly status. He had mommy building legos on their first day. Today, I made a mistake during our build and he looked at me, “You’re not thinking vewy well.” What’s new?
He’s also taking part in a study on light therapy potentially helping with mucositis in children. This has been proven effective in adults and St. Jude is now evaluating it in kids. Many transplant conditioning regimens include chemos that obliterate the digestive tract lining, from one end all the way to the other. There is no such thing as TMI on a BMT unit, so apologies for this and future mentions. This can result in mild burning to open sores that make it virtually impossible to swallow, hence why so many kids end up on feeding tubes. There is a chance the light will help ease those symptoms. Here is Jennings doing his part to advance medical science.
The sweet shades are more style than necessity. The light is not harmful, just annoying…and a great excuse to don these granny-style UV blockers with side shields.
Another part Lauren and I are re-learning is hospital sleep. The art of salvaging a few hours between mandatory every 2-hour checks, 4-hour vital signs, med schedules, and IV pump alarms is one that is easily forgotten. Not to mention that the room with the nice view came at a price…it is directly across the hall from the frequently visited Clean Supply Room. We’ll each have plenty of practice, but we’re thankful to have each other to tag out. With the COVID situation, that is not a reality for most.
Today, while I was harassed for lego mistakes and not bringing enough “new transformas,” Lauren fluttered around the house like Tinkerbell…I kept getting texted pics that looked like:
and my jaw kept dropping further and further with each one. If you had seen the “before” state, you would be as amazed and grateful as I am. I am not wired to function well in disorder and chaos. Insert joke about why I would have four kids here. God has done much work on me in this area (reference the four kids), but I still tend towards idolizing order & control, especially of my environment. This will be such a gift to come “home” to.
Our next several days will look something like this for the hospital parent. The normal-kid parent will be shuttling to schools and decompressing from what will surely begin to get harder and harder.
We are awash in memories given the timing of admittance to BMT and the move back into Sean’s House. We are seeing familiar, kind, smiling faces in both places. So many of the sights, sounds, and smells take you right back. Some of those places are hard to think back about, having been tucked away in the darkest caverns of the mind. Some of those places are filled with nostalgia and even some yet filled with joy. I was reaching inside a piece of furniture while unpacking the one box I tackled and I found a handwritten note to myself on a scrap of paper, left behind to gather dust three years ago. Amazing how God weaves our stories together, then sometimes back over themselves.
Thank you for praying for these transitions. You can continue to pray with us that side effects from the ATG will be minimal (no fevers!) and that all six of us will find a good rhythm. One where all of us get some of what we need.
“It is the Lord who goes before you. He will be with you; he will not leave you or forsake you. Do not fear or be dismayed.” Deut 31:8
#allinforjennings