Life is just interesting beyond measure sometimes. Like, traveling to the NIH for myself and my 3 kids to be tested, researched, and hopefully diagnosed. Some words I never thought would ever come out of mouth, yet, here we are.
Yesterday was our travel day, and oooh what a shit show it was. We took 2 planes. The first was a mess getting through security for reasons that were not our fault, but we held up the line and it gave me massive anxiety.
Then, on the second flight, they have all Christian, my 7 year old, separated from me. And that’s obviously not okay. They had us in 2 middle seats one row apart. So I asked the man sitting there if he would mind switching so my 7 year old son didn’t have to be alone. He said no, very boldly. Okaaayyyy asshole. I mean, I get it, but don’t be rude about it.
The man sitting next to Christian kindly agreed to switch with me, so that was resolved. But I was pissed at the grumpy man for being rude for no reason.
The kids did great on the flights, and I’m soooo glad I got to sit with Christian and my husband got the pleasure of handling Phoenix on the second, longer flight. If you know, you know. 😂 The baby got passed between both of us and did great too.
So we made it, the driver met us at the airport and drove us over to the NIH. Everyone was exhausted by this point, we’d been up since 3am.
Going through security was intense as hell. It made you feel like you were doing something wrong, even if you weren’t.
We got there fine, all checked in, and explored. We had no appointments yesterday other than heading to admissions to register, so we had time to play.
The Children’s Inn is a fantastic place for kids. I would say it’s as described. “A place to come home to and relax after a long day of medical procedures”.
They had a blast seeing all there was to see. I’m glad that after a long day of traveling, they walked into something they were excited about.
After we explored the Inn, we headed over to admissions, where they absolutely tortured Phoenix, I mean, consented us for treatment and such which took about 2 hours from start to finish. We got through it though!
Bedtime was complicated. All of day 1 was complicated. It was so new and unknown and none of us really knew what we were doing. But they all went to sleep after a very, very full day.
Day 2
Today was ….to put it lightly…..insane.
Back to back to back appointments from 8am to 5pm. Echos and MRIs and muscle ultrasounds and consults with some of the smartest doctors we’ve met.
The only doctor we met during our last appointment today had some new theories or possible options about our case that my husband and I both heavily disagree with. 2 of the theories she suggested just simply don’t make sense. So…we’re really hoping she’s not stuck on those.
There was no time for fun or playing today, and Derek and I shuffled kids around all day to make sure I was where I needed to be for appointments and so were the kids. A lot of the appointments staggered each other, so it was a lot of chaos and running around.
It was a tough day for everyone. But we got through it.
The day ended with the results of my echo coming in as we were walking back from our last consult with the neuromuscular doctor.
The results weren’t good, and essentially suggest a diagnosis of cardiomyopathy. Which…..is bad. It was a hard day. It didn’t have a good ending. We still have 2 more days of testing here before flying home on Friday.
I’m hoping we leave this trip with the diagnosis we expected.
But honestly? Nothing will surprise me at this point.
This sounds brutal. I’m sorry you all have to deal with this.
I’m glad your kids can experience this together with you, though. At least they don’t feel alienated. They have each other as well, which is cool, although, of course, not cool at all for you and Derek.
I’m sending you all a super tight virtual hug.
They’re so used to going to doctors, they don’t even think it’s weird. They do, however, thinks it’s awesome that they get to eat whatever they want and play on the awesome playground and everything else they have to do here.
I’m hoping to fun memories outweigh the messy ones.
I just hate that this is our first real “family trip”. Like on an airplane and stuff. I’ve been away with them individually, but never all together.
I just hope something good comes from it.