Test of Endurance

Cyrus's face describes it all! 

Our lives have been crazy enough that I've barely had a moment to think, let alone string together any words for a coherent blog post or four, but there's definitely been a lot to write about. Consider this to be the first of three or four updates I hope to have out in the next two weeks or so. This post is for the month of August.

A whole two days after our sleep study and less than a week after failing his swallow study, Cyrus was admitted to the hospital again for an NG tube placement. I could tell the moment we were checked into our new room that he was not thrilled to be there - it's like he recognizes the place! And perhaps he did, as this was our third visit is less than a week. The worst part of it was, there were orders on his chart that said he wasn't allowed to eat anything by mouth! There those medical professionals go all panicking again...

That order wouldn't have been so bad except the order to place the actual NG tube hadn't been put in yet, so the nurses couldn't proceed even though everyone knew that was the whole purpose of our visit! He handled the fasting better than I would have - by basically rolling over to his stomach and giving up on life for awhile - acting as the personification of apathy and resigned acceptance.

Tell us how you really feel Cyrus.

The actual NG tube placement was quite the spectacle, that involved three experienced nurses, and a nursing student, and of course me - who was just holding him in place as best as I could. And he handled it like a champ! He tensed for just a second, and then was fine. The whole ordeal lasted less than thirty seconds. In fact, one of the nurses turned to the nursing student and told him, "Don't ever expect that procedure to go that smoothly. There's usually resistance and screaming involved. Even adults don't like it."

What IS this thing?!

He did spend the next hour or so dramatically waving his head back and fourth as if to say, "What is this?!" With the NG tube placed we still had to remain in the hospital for a few days to confirm that Cyrus could tolerate the feeds, and to receive training as his parents in checking the tube's placement, using the new feeding pump, and learning how to re-tape the tube in place so that he couldn't just pull it out. They also wanted to do another barium study - this one to map the shape of Cyrus's upper intestinal track to prepare for surgery for his permanent G-tube placement.

Imaging Study with cool x-ray machines!

This was a study that involved another really cool imaging technique that I got to geek out over. It was incredibly similar to the first swallow study, but I think I also just enjoy getting to see the inside of my son's body - especially live as it is working!

Mapping Cyrus's Intestinal Track.
This one reminds me of the monster in Stranger Things!

Afterwards we were discharged from the hospital, and were privileged enough to spend a whole day at home (two nights!) before heading back to the hospital for surgery. We were told to arrive by 10:30 AM, and that surgery would be at 11:50 AM, and that Cyrus needed to fast for the twelve hours prior to the procedure. We arrived, checked in, and waited.

And waited.

And waited some more! With Cyrus getting fussier by the minute! I checked in at the desk multiple times, trying to confirm that they at least knew we were here.

When we were just 15 minutes shy of our scheduled surgery, I went back to the desk, to ask what was going on, and why we had to arrive so early. She checked the schedule then, and informed us that Cyus's surgery had been rescheduled the night before for 1:50 pm, and that we have arrived hours too early.

"Did no one call you?"

I didn't scream.

A few minutes later, I received news about another totally unrelated family emergency, of which I could do nothing about. And Cyrus, the ever chill child, was now outright crying because he was hungry. I also hadn't eaten anything myself because I had planned to go grab food the second he was in surgery.

At this point a social worker came out to speak with us. She explained that not only was Cyrus's surgery rescheduled as the person at the front desk had already told us, but that the two surgeries before Cyrus in the operating room had both gone longer than anticipated, and they were running an hour behind.

I did cry.

The social worker gave me a snack pack and some meal vouchers, insisting that I take care of myself.  She also pulled us into a private waiting room, and requested Cyrus be given fluids to keep his blood sugar levels up. As a patient with a metabolic disorder, they apparently worry that the extended fasting can cause his blood sugar to crash unexpectedly. Unfortunately, having extra sugar in your blood does nothing to actually satiate you. And he continued to cry inconsolably for hours. Until around two in the afternoon when he cried himself to sleep.

Three hours after that (so now two hours later than running an hour behind, and more than five hours after the time we had originally been told), Cyrus was wheeled away for surgery. Kyle and I were able to have a real dinner before heading back to the hospital for our post-up surgery consultation, and to hang out with a very dopey three year old.

The surgery apparently went well, and Cyrus recovered quickly from the sedatives. He woke up  much calmer than before (sedatives were helping I'm sure) and we learned from an extremely friendly surgery recovery nurse how to give him his medicine through the brand new tube. And it was so easy! No thirty minute wrestling matches required!

He spent the next three days in the hospital to be sure he was continuing to heal well, to make sure he could tolerate this new method of feeding, and so that mom and dad could be trained on how to take out and replace his g-tube button. He hated being trapped in the crib during this time, so I tried to make a point of taking him out and sitting with him on occasion, even though this was difficult with all the monitoring cables attached to him still. This only placated him slightly, as what he really wanted was to roll around on the floor.

But once he got home, he still wasn't pleased since he wasn't allowed to be on his stomach. The surgeon said he wouldn't want to be - that it would hurt. Yeah, Cyrus didn't care. I'm not sure he understood the cause and effect that being on his stomach caused the pain to increase. If I turned away for a second he would roll onto his stomach, and then immediately start hiccuping. So he probably felt the pain for sure and was unhappy about it, but that was still the position he wanted to be in.

See! He's totally thrilled! And not at all too big for his chair...

This lead to three really long days! We tried to keep him in the chair for as long as he would tolerate (far longer and more often than normal). Then we'd move to the floor, but would have to hover and guard him from rolling over onto the surgery site. He was so angry with us like all of the time, and one of our attentions had to be on him at all times. Occasionally, we'd get a small breather if he would let us get away with putting him in the bean bag chair, but most of the time it didn't work. It was emotionally exhausting after two weeks of emotional exhaustion! But come that Friday, and we were both free, it was so much easier!

Except he was still constantly pulling on the button and the tube both. It was actually fascinating to watch him try to grab things so intentionally! It would take him three or so tries, but he would get the corner of his shirt and pull it up. Then immediately go for the button. And I just sighed - feeling he picked a bad time to develop fine motor skills. We learned to put socks on his hands. This backfired (or paid off, depending on how you look at it) a bit as within a day or so, he learned to grip things through the sock just by pushing his fingers into his palm.

Socks!

I'm delighted to say that once things settled down, things got immensely better for Cyrus. It has been so much easier to give him medicine - something that was becoming a 30 minute ordeal twice a day, now can be done in 5-10 minutes. Feeding him is so much easier, and he's clearly feeling better. Like I don't think I realized how much the constant aspiration was probably irritating him and making him feel off. The three weeks following the surgery, we were treated to Cyrus's happiest version of himself - we've seen this Cyrus on many occasion, but never which such frequency.

He put on three pounds in the space of a month, and has just had more energy in general. He's more active and less fussy. It's been really nice to enjoy. He is far more socially engaged. He just responds more when people talk to him or smile at him. He's laughing more. He is in love with life! I've certainly never been able to collect so many pictures of a smiling Cyrus before! And we find ourselves wondering why we didn't do this ages ago!

General Update: 

Our test of endurance seems to be continuing with a batch of regrowing and stubborn granulation scar tissue at the surgery site, common colds plaguing Cyrus and mommy alike, continued battles with our insurance company, volume intolerance (which involves vomiting), increased seizures while our neurologist is on leave, and extended hotel living (we're up to a month now)! Yay! But more on all that later! In the meantime, we're hanging in there taking one day at a time!