It’s been a LONG time since I’ve given an update on Gannon.
June and July were FULL of appointments and follow ups in Iowa City. We were down there almost every week this past Summer.
I feel like I need to give some context – that’s how long it’s been since I’ve given a Gannon update. I’ll try to summarize the best I can but if you’re wanting more, you can search Gannon on my website and you’ll get everything and more that you’ll want to read/need.
Gannon is my son, he is 21 month old. He’s had more procedures and specialists and surgeries than many adults I know. It started when he was born when his testicles didn’t descend as they should have, he will have permanent damage to one testicle, he was hospitalized at 6 weeks for about a week with a tube to decompress his massive bloated belly, a gross motor delay, a speech delay, low muscle tone, an abnormality in his spinal chord, orthotics/braces to correct a talus hindfoot valgus, hearing loss, several overnight hospital stays, several specialty visits, so many xrays and imaging and studies. Gannon doesn’t tolerate anesthesia well. Gannon had difficulty swallowing, walking, talking, sitting up on his own. Gannon has chronic ear infections. Gannon’s joints are especially loose. Gannon has had hernias that needed to be repaired. We still aren’t sure exactly what Gannon has, but we have drawn several conclusions:
- Gannon has something called anal achalasia. This makes it very difficult and painful for Gannon to pass stool and gas. Until he was diagnosed and treated, Gannon would cry and cry every time he had a bowel movement. This was diagnosed with something called manometry – we spent 4 days in Milwaukee, Wisconsin last Summer to finally get a diagnosis. Read more on that visit here: There is treatment for this, it involves a procedure, Gannon is sedated, botox is injected into his anus to completely relax this muscle so he is able to pass gas. This is a form of Hirschsprung’s disease – what he was initially hospitalized at Mayo for to rule out. More on that below.
- Gannon likely has a connective tissue disorder that effects his collagen and how certain body systems work. A common connective tissue disorder is called Ehlers Danlos syndrome, you may know someone with this. We have a genetics team on board. We began that process in July and we should have the genetic test results sometime in December. We believe all of Gannon’s symptoms could be linked by a genetic disorder.
- Gannon has a big belly. This is what first concerned us about Gannon. Gannon’s intestines are dilated so the stool just hangs out and sticks to the sides and collects. He is severely chronically constipated and takes enough miralax that would make the average adult “shit clean through a screen” as my husband would say. Gannon cannot tolerate dairy or his constipation is 10x worse.
- Gannon has a few heart issues we are watching. I’ll let you read more on that here: http://www.thepinkshoelaces.com/gannon-update-cardiology-and-botox/ and here http://www.thepinkshoelaces.com/gannon-update-bad-news/
So we have had to fight long and hard to get to where we are. Any specialist looks at him and says “he’s growing well!” and we felt dismissed. In the meantime our poor baby couldn’t even poop without screaming – sometimes even bleeding – sometimes even needing to be manually cleaned out. When I tell you it has been exhausting fighting for a diagnosis, I mean it.
Which brings us to today. We have had a relatively uneventful fall with Gannon – a follow up here and there. Mostly we’ve been waiting for genetic results. Then about three weeks ago things started feeling a little too familiar.
Miralax wasn’t cutting it. Gannon starting crying again when he pooped. His belly seemed bigger. Then one night I snapped this picture…
I had it in my phone a few days. This was considered a bad bloating day for Gannon but nothing we hadn’t seen or dealt with before. Then when he was having trouble a few days later, I decided to message his GI specialist at University of Iowa.
Please keep in mind, I’ve been staring at this belly for almost 2 years now. I’ve begged specialists to take me seriously when I was concerned about his bloating. I’ve sent dozens of pictures begging them to do something about his bloating and his big belly. I’ve been trained that they don’t really care, it isn’t a big deal, and this is just Gannon.
These pictures were all shrugged off as normal.
5 minutes after I sent this message, I got a call – I needed to schedule a video visit ASAP. Weird. So I did and was set up the next day to meet with our specialist.
Keep in mind, we were frustrated enough with our GI specialist NOT taking Gannon’s bloating seriously enough that we “fired” this GI doctor and asked for a new one. Well, our new GI doctor isn’t as available, we like her a lot but she has some administrative duties that limit her availability so the doctor we “fired” is back on his case, working under our new doctor.
We met with her, she asked a few questions, she then said Gannon needs more botox injections, they think his first round is wearing off and they will see us on Wednesday. Woah. We’ve NEVER been expedited like that before. She was very concerned about his bloating now. What changed? I don’t know. What was different now? I’ve sent this same kind of picture a thousand times before.
So, long story short, Gannon gets a COVID swab in Iowa City on Tuesday, (2 hours there, two hours back) and then the procedure on Wednesday afternoon. They also want to do some imaging to see if he is retaining stool.
In the meantime, Gannon has a big day with the Center for Disability and Development. It’s next Tuesday, we could easily just get swabbed then and have the procedure next Wednesday. It would be delayed by one week. I asked the nurse if we could delay his procedure by a week. The same nurse that I’ve cried on the phone with begging for them to help my son so many times. He said, “I saw those pictures, his belly is HUGE. You need this procedure next week. Why would you want to delay that?”
I could have thrown the phone across the room. Guys, I’ve begged and begged and begged for someone to take us seriously. So much so that we drove 4 HOURS to meet an entirely new team of GI specialists in Milwaukee to help us finally get a diagnosis and the testing we needed to get him a diagnosis and treatment. So much so that we fired the GI specialist who didn’t take us seriously in the first place. So much so that after Gannon didn’t get any answers at Mayo after his first hospitalization we were discharged and drove him to Iowa City for a second opinion.
Now this nurse, who I know knows me and knows Gannon’s case, has the nerve to imply that I AM SELFISHLY DELAYING GANNON’S CARE!?!
The point is. December is a busy month. I’m thankful they got us in so quickly. I’m thankful they are taking us seriously. I’m thankful Gannon’s needs are being met. I’m thankful he can still have this procedure even though COVID is still raging. I’m thankful Craig can come down for his procedure. I’m thankful, I promise. I would be even more grateful if we could get Gannon’s genetic results before Christmas.
Here are a few more links to posts about Gannon’s medical issues – the best way to see all the info (trust me, there’s alot) would be to search Gannon in the search bar on my homepage:
Thanks for reading friends, I’ll keep you posted. It’s sure to be an interesting week as I’m switching to day shift next week AND now have all of these appointments too.
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Bless you all! I’m keeping you in my prayers as you struggle to find help for your beautiful child. I sorry the nurse was so judgmental about your trying to fit all your schedules together. Waiting weeks or months for appointment you really don’t want to change the carefully set schedule. The add COVID on top of it and life can quickly become impossible. Keep going and you’ll find your way through.
Gannon is so lucky to have YOU for his Mom! Advocate Advocate Advocate. You are certainly entitled to all the feelings you have for providers that have blown you off as a young Mom.
Hugs to you all!
Maybe she needs a link to your blog…..
Wow! I’m so glad that Gannon has you and Craig to advocate for his care, this is crazy! I hope the procedure goes well and he is back to being more pain free with his bowels. What a full schedule you will have in December. Prayers for all, safe travels to and from all the appointments, work etc…
I I know you’re upset about how things have gone with his care, but I feel you’re getting mad at the wrong person. It’s likely the doctor who made the decision about his needing to be seen this week. I think it was a good question, but perhaps it could have been worded differently. You were concerned enough to send pictures, but then you ask about a delay. She may have wanted to understand your reason so they could explain potential dangers and be sure you were making a fully informed decision.
I’m sorry that nurse was so judgmental. Many in the medical community just don’t understand what it is like to live with a chronic condition or to have a loved one suffering with one. They just can’t fathom or imagine the hard that exists on a day to day level. And sadly like you say so many just don’t care.
My husband and I both are suffering with chronic conditions that cause pain and I could go on and on about the lack of care and compassion we’ve both endured. It’s very sad that in this day and age you essentially have to use google to try and diagnose yourself and get multiple opinions over years with different doctors. I’ve heard and read about many others chronicling similar experiences.
I really hope your appointment is very productive and they can finally offer some relief to Gannon. You’re doing an amazing job being his advocate and getting him a diagnosis. I doubt many other people would have gotten this far in 21 months. That nurse really just has NO idea.