Still Miles to Go

The last few days since my last post have been action-packed! Today, Keith and I went into Boston for my gastric emptying study, which is a precursor to the Antro-duodenal Motility test I’ll be having at the end of October. We confirmed what we already knew from endoscopy: my gastric emptying sucks. I arrived at 11am for the study, having fasted for about 10 hours. I was exhausted and just wanted to sleep – but more on the reason why below. I was sat down with 2 eggs scrambled with some yummy radioactivity goodness, a glass of water, and some toast. I warned the administrator I wasn’t very good with solid foods and then began choking them down. I asked if I could take some zofran after nearly losing the eggs on the floor, but was told “no.” I finished the eggs – barely – with 2 sips of water and no toast. I think the test ruined scrambled eggs for me permanently because I will forever associate them with a metallic taste.

I was then told that for the first hour I had to remain still on my back while a scanner took pictures every minute. If my stomach had cleared 50% of the food after 60 minutes, I could leave. I was told that 60 minutes is the average for a “normal” person. We laughed. He continued to say that after that I could sit up but we’d have to take more pictures every 30 minutes until I reached 50%. We were there 3 hours – usually, the test ends by 2 – and I still hadn’t reached 50%. Because the reading was exactly the same for the last 90 minutes, he said I could go as he didn’t see much happening soon after I kept steady at 44% emptied. I immediately took a zofran and drank some water as I couldn’t have anything for the last 3 hours. And that’s how I finished the 2nd of my 5 medical appointments this month.

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I had mentioned that the last few days we packed, right? Well, Keith and I spent Tuesday and Thursday at Six Flags New England with our friends Stefani and Ralph, their two kids (Will and Sasha), their niece Kaitlyn, and their nephew Ryan. Ryan, Will, and Sasha are all under 8 years old. Kaitlyn is 14 – and a rock star. Why? Because she took on the responsibility of an adult – with amazing grace – while traveling with four people with mitochondrial disease (two kids and two adults), two kids with ADHD, and two grown-up boys who just wanted to be boys and go on all the big-kid rides. I didn’t hear her complain once. I don’t think the generalizations about “today’s teens” apply to Kate.

We ended up having a blast. I repeatedly got overheated, but we were able to manage it okay by spending the hottest hours of the day at Hurricane Harbor, the water park. The other hours were spent in the shade with ice packs on my head and neck, guzzling fluids. Other than that, I had a very good few days, losing my (liquid) breakfast only once… before getting on any rides, believe it or not! We did a remarkably good job balancing the special needs of everyone in our group, while allowing the big kids to go on big-kid rides and the little kids to go on everything they wanted and were able to go on. Eight-year-old Ryan even got to go on his first upside-down coaster! Go Ry!

Since the park closed at 9pm yesterday, we decided that we’d catch one last ride at 8:40pm and try to beat most of the crowd out. Stef, Keith, Ryan, Sasha, and Will hopped on the Tea Cups while the rest of us with woozy tummies watched. Halfway through the ride, Keith stopped spinning the cup suddenly. Will was carried off the ride when it came to a complete stop. He was certainly not looking himself and complained of a headache following bonking his head on the ride. Now, I should mention that Will has a Chiari Malformation, which makes head injuries especially dangerous. We decided to keep an eye on him and get him home as soon as possible. By the time we reached the car, it was obvious that Will was one sick little boy. He was dizzy, nauseous, and in intense pain. We called the ambulance after consulting with his neurosurgeon.

I have never been conscious when EMTs have arrived to help me and so this was a surreal experience. They stabilized Will on a backboard with a neck brace and Stef hopped in to ride along with her son. Before he left, I gave him my stuffed “Tilly” dog to keep him safe. I told him that she had accompanied me on numerous ambulance rides and hospital stays and she would keep him calm and healthy. Tilly, once again, proved herself to be an amazing dog. Keith and Ralph drove the rest of us – in two cars – to the closest hospital. When we arrived, Keith watched Sasha and Ryan with Kaitlyn while Ralph and I – Will’s “Auntie Chelsea” – went in to the ED to find out how he was. Will was still clenching Tilly when I arrived, telling me that she kept him very safe. Immediately, we knew he was feeling much better as he was sitting up and talking (something Will does quite well). After 4 hours of doctor visits and consults, Will was discharged with a likely concussion. Stef and Ralph were told to wake him every 2 hours to make sure he was still okay, but we were quite confident that he would be as he got goofier and more like “Will” as the hours passed. We got him fed and began the trek home. Will was out within 10 minutes of getting food in his stomach.

We arrived home to our two service dogs (Beast and True) who Auntie Weese watched so well – thank you! And these pups were the two happiest dogs in the world. We ended up crashing at their house (despite living 3 minutes – literally – away) because we were so beat and didn’t want to unpack. Now, wouldn’t any normal person be exhausted for her gastric emptying study after that ordeal? Yeah, the abnormal ones are, too. 😉

Coming up next week: 5 days tutoring, immunology appointment, metabolics appointment, and Sasha’s 5th Birthday!!! I don’t think we’re allowed to get brakes in this life.

PS The muscle biopsy consult was rescheduled for August 30th with the OR as the normal surgeon wouldn’t do it in as a normal outpatient procedure since I don’t react well to anesthesia or surgery. This means it’ll be longer and more complicated, but – hopefully – safer.