I feel like it’s been ages since I’ve written anything on this blog. It crashed. I had to get it restored. It took a long time. It was a pain and painful. I realized once again that I need help in computer related areas of my life. I wish computers were a thing when I was growing up. I remember being in school and a teacher saying that one day everyone would have a computer in their house. I remember thinking that sounded far-fetched, but look at us now. I almost feel like I’m living in an episode of the Jetsons. I just wish I had the amazing dog walking sidewalk and Jane Jetson’s maid.
Welcome to my brain. Focus, Dawn.
Yesterday Zack had a stomagram. It was part of the recommendations Boston sent to our doctors here as next steps to rule some things out. Zack had been working hard in therapy to get ready for the test and boy could we tell! Thanks, Dr. Caitlin!
Zack’s GI and his pediatrician worked hard to make things low stress for him as well. And guess what? Zack was a ROCK STAR! I believe his GI doctor’s exact words were, “Who is this child?” I think Angry Badger left the country because there was no procrastinating, no fussing, no crying — just a compliant and happy child. I do not want to overthink it. I’m just so incredibly grateful to everyone who has worked so hard to help Zack overcome his incredible fear and anxiety. Even if it only lasts for this one day, I’m so proud of Zack.
The other amazing thing that happened was that his pediatrician arranged for immunology to come down to the fluoroscopy suite to give Zack and his GI doctor their flu shots together. When I say that I believe Zack has the best medical team, I am not exaggerating. Shots normally freak Zack out and require two people to administer them. Not this time. Zack stuck his arm out and barely flinched when the needle went into his arm. Seriously, I am so amazed. Zack did have a little bit of medication to help take the edge off his anxiety, but he really shocked us all with how laid back and compliant he was.
Because I am pretty sure my family will want to know what stomagram is, I thought I’d give you my description of what happens. Zack’s stomagram was a dye test that was performed by inserting a catheter into Zack’s stoma and injecting contrast into his intestines. While this was happening, x-rays were taken in real time (like a video) to watch how the fluid flowed. The purpose of this specific test for Zack was to look for strictures and areas of dilation in the intestines. It can be a bit uncomfortable, but Zack seemed oblivious. Unbelievable…
It appears that the stricture we saw previously is no longer there. This is awesome news because I believe (I’m never quite sure if I’m right) that this means we are one step closer to being able to try some new medicines to try and control Zack’s output. One medication that has been mentioned is octreotide. I don’t know the name of the other one, but Zack’s doctor believes it may be an orphan drug? And for all I know, there may be many more to try. However, the presence of strictures makes the likelihood of those medications obstructing Zack much higher and nobody wants that.
Zack will also have an abdominal ultrasound in a few days to rule out a hernia. Ultrasounds are easy for Zack, so I am not worried about him freaking out over that. I think that will be the last test for now. Zack’s doctor(s) and I are still debating the need for more manometry testing. Some people with the ACTG-2 gene mutation can have waxing and waning symptoms. BUT even if his colon had some action, there is no way we would ever reconnect Zack given how sick he became last time we tried it. In addition, his last two manometry tests showed very little and no motility. On the other hand, I understand that the more information we get on Zack’s intestines the more we will be able to understand his specific disease. I’ll save that discussion for another day.
Now that we are back home, I have questions. Is a stricture able to resolve on its own? Could that really have been a snapshot of Zack’s intermittent obstructions? He also has a stricture higher up closer to his stomach, but this test did not go up that far. Do we care about that one? Is it small enough not to worry about? You would think these questions would occur to me when Zack’s doctor is around, but they don’t.
Zack was actually tired on our drive home and almost fell asleep. That literally never happens unless he is really sick. I’m guessing that the little bit of medication he had on board helped with that situation. It was a good day all around. I love good news. More than that, I love that we were able to see Zack feel comfortable in a medical situation for the first time in years.
Hug your babies!