It's almost unheard of to have this many appointments scheduled on the same day, stacked so well - but it happened.
The Medical Marathon actually began the night before as we made plans and got everything ready to go. We drove through the thinning darkness toward Salt Lake City. Amazingly, the lab had the order. Usually, I’m on the phone for at least 30 minutes trying to get the order faxed. But today, it was there. They called Jaydon back quickly and within 5 minutes, it was done. We ambled across the bridge to the main hospital. My 4yo ran ahead, laughing. We got checked in - after a minor computer glitch - and they said, hey! We can take you back now. Do you want to wait? Um, NO! We’ll take the NOW appointment! Everything went quickly and the fuzzy images on the screen looked good - at least to me.
We checked in at Urology and they were running behind so we went to the cafeteria and hung out for a while. The 4yo was so full of energy and life. There was so much laughter. Jay even got some of the cute custodial staff to give him some tamales by laughing and joking with them. They were SO good!
In Urology, I was almost afraid for that appointment because for some unknown reason, we missed scheduling an appointment. They didn’t have the schedule up at our last appointment and I didn’t get a phone call to schedule it and I forgot to make said phone call. But, nothing was said about that. The ultrasound looks so much better than it did a year ago. He’s doing better with the regular day to day maintenance. They questioned whether to change up a couple of his meds but decided against it - pending what Transplant would tell us.
We had to hustle back across the bridge for the remainder of the appointments. Jay told me I didn’t need to run, but since the 4yo was running, I was power walking. We checked in for the appointment where I discovered an exploded fry sauce packet in my laptop bag. Thankfully, it was in a different pocket than my laptop was in. All the patients and staff and I had a really good laugh over it. “Oh! Thanks so much for the fry sauce in my laptop bag. I love you SO much, honey!” Jay was cracking up - especially when they brought me a package of wet wipes and some washcloths.
Dietary told us that Jaydon had grown taller. He’s 5 ft 6 inches tall - well over a foot of growth in just over a year. But, he’s down 3 lbs. That puts him in the 10th percentile for growth - down from the 20th percentile that he has been in. He needs to focus on eating ALL the fatty things and we might need to start on supplements again. We’re almost positive that the loss was due to the gastroenteritis (stomach flu) we all got a few weeks ago. It’s wicked stuff.
Nephrology came in next. Jaydon’s kidney is at 22% function, down from 24%. His creatnine is at 3.1 up from 2.8 last time. We took his blood pressure several times. It’s high. Not like high high. But high for a kidney-kid. High blood pressure affects the kidney in an adverse way. We adjusted his meds and were asked to get his BP checked at least every other week. I’m hoping the EMTs want some practice and will help me out with this.
And then, THE appointment… The one with the Transplant Coordinator. All the feels hit. Disbelief that this is really happening. Fear, unsurity, and then peace. We started by me giving a brief history of his medical issues so the coordinator knows how much I/We understand. I think I passed, probably. Ugh, this appointment was hard for me. Jaydon “slept” through it. Jay asked loads of questions. Me? I took notes.
Here’s the brunt of it…
We’ll be starting all the transplant paperwork before September because if we get Jaydon on the transplant list before his 18th birthday, he gets pediatric preference. We’ll be deciding whether to go with a living donor or a deceased donor. Living donors tend to do better overall and no one has to die for his to happen. So, we’re leaning that direction. This is what we know about the donors for Jaydon. They need to be between 18-50 years old. Older donors COULD be taken if we’re willing to do a “donor swap” “Chain Donation” situation. Basically, our donor donates to an older recipient while that patient’s younger donor donates to Jaydon.
It’s really a hurry-up-and-wait type of a situation. It can take 3-4 months for him to get on the list. It can take 8-12 weeks for a donor to be matched. And then the whole donation process.
Part of me wants to get it going NOW and part of me wants to wait til September - to put off the inevitable. There are a LOT of breathing moments. Moments taken to soak it all in. Moments where I just break down. And it’s okay. It’ll all be okay. We’re adjusting to the new normal. I’ve been doing a lot of praying. God’s love is surrounding me. It’s hard and we’ll get through it. God has never given me a trial that HE can’t help me through. I’ve got a 100% track record of getting through the hard things. It might not have been a pretty path, but it’s a through-path.
The event that was just over the horizon has now become the mountain in the distance. We can see it and it’s getting closer. And we’re right back to what I’ve been telling people for quite a while. He needs a transplant BUT it’s not today and it’s not tomorrow. And for that, I’m thankful!
