FOR 4 MONTHS we’ve been waiting on a final diagnosis for Gannon, we’ve been patiently awaiting his genetic testing results and a full month later than expected, Craig and I got the phone call while we were on our date on Wednesday. The moment you’ve been waiting for:
Gannon has nothing.
No connective tissue disorder, no Ehlers Danlos, zip, zilch, nada.
Which is good. It’s confusing and a little frustrating but it’s good. It would be so nice to put a bow on all of his symptoms and say “this is why he is the way he is” but Gannon is totally normal. Which is good. However, this doesn’t explain the:
Extreme constipation, PFO, anal achalasia, talus hindfoot valgus, undescended testicles, bloating, fibro lipoma of his spinal cord, dairy sensitivities, inguinal hernias, dilated pulmonary artery and aortic root, speech delay, occasional wheezing, gross motor delay, eczema, his velvety stretchy skin and his joints that literally fold in half to the point where we can’t get a normal shoe on his foot.
But, all those are manageable. Gannon lives a pretty normal life. Gannon isn’t in pain. Gannon is growing well. Gannon should by all means continue to live a fairly normal life.
When we first started investigating Gannon’s symptoms more seriously, at about this time last year we were waiting to get into Milwaukee, he was still vomiting daily, couldn’t poop without screaming, and choking on graham crackers. He was missing milestones and had undiagnosed significant hearing loss. He hadn’t gone for any of his 6 procedures/surgeries yet that he has had in the past year.
A year ago, we did not have the answers we have now. And even though this feels like a NOT answer, it’s still an answer, one that thousands of parents all over the country pray and pray for. So today, I’m celebrating Gannon’s NEGATIVE genetic testing results. I’m also patting myself on the damn back looking back on how far we’ve come in the past year.
It was 54 degrees when we left Iowa City. It’s currently 10 degrees with insane winds and snow. I’m so glad I don’t have to work tonight! We just about blew away on the way home. Holy wind. Sounds like Minnesota is getting hit pretty darn hard.
Gannon got car sick about 5 miles out of Iowa City. Ever try catching puke while navigating the 380 and I-80 interchange? 0/10 would not recommend.
Imagine this: trying to catch puke, driving down the interstate, then trying to pull over, then feeling too unsafe to pull over, flooring it to the nearest gas station like 3 miles down the interstate, unsuccessfully catching any puke, then the door damn near blowing off of my car while I clean up a screaming still half way drugged up Gannon, having to do a full clothing change, my phone kept ringing while I was busy, and that terrible wind – it was just a scene.
They used a different kind of sedation – ketamine – when we give kids ketamine in the ER they are more prone to puking too.
Less than 2% of kids with anal achalasia DON’T have a form of Hirschprung’s so in simpler terms, Gannon is rare. We have no idea why this last round of Botox didn’t work – maybe a bad batch? Admittedly, Gannon has our GI doctor scratching her head. She reached out to our GI team in Milwaukee to see if they have any more thoughts. She is in total agreement with my concerns – she always has been and she isn’t afraid to admit when she isn’t sure – my FAVORITE characteristic in a healthcare provider. Seriously. I’d rather you tell me you don’t know than to shut down any other options because you’re afraid to admit you aren’t certain of what to do next.
The team was so fabulous I sent them all a Jimmy Johns party platter after we left. Our GI doctor came in on her day off to do the procedure. She’s just awesome. We had several of our same nurses we’ve had other times – one nurse that cared for Gannon had worked with some people I worked with. She was also an ER/ICU nurse! Small world. She was so nice.
Enjoy some happy baby versed induced giggle pictures. We are home for the holidays and Santa is coming early tomorrow morning (Christmas Eve) because mommy has to work the rest of the week ?
My poor baby was in so much pain. For hours we sat on the bathroom floor and I just held him as he screamed and cried.
The Botox injections didn’t work. We don’t know why. If anything, everything got worse. He can really only pass stool if it’s liquid. He’s so anxious about pooping now that he think he gets even more scared if it’s harder for him to go.
This will now be our third week in a row driving to Iowa City.
Gannon needs to get the Botox injections again and hopefully they work this time or he’s going to have to have a bigger more permanent surgery.
So not only do we have to drive down for the Botox injections on Wednesday, we have to drive down tomorrow (Tuesday) to get him swabbed for Covid.
That’s two hours in a car on the way down there to get a swab jammed up his nose in two hours home.
They will not do it the morning of, it has to be done by 11 in the morning tomorrow so it’s not like we could even stay overnight.
I know it could be worse. But tonight I’m throwing myself a pity party and I’m throwing a pity party for Gannon.
I’m so mad that we don’t know why he suffers like this.
All I wanted for Christmas was the genetic testing results. They still aren’t back yet. There’s no way to contact the lab and find out the ETA.
I’m just so sick of this. I was trying to coordinate all of these appointments while I was at work and try to rearrange my schedule so I wouldn’t let my team down or my family down.
It’s just getting really hard and I’m really sick of this. I’m really sick of Covid. I’m really sick of having to drive to Iowa city. I hate that he has to have anesthesia again.
But more than anything, I’m willing to do whatever needs to be done so Gannon never has a morning like he did on Sunday again.
TUESDAY MORNING UPDATE: I’m feeling a little calmer this morning than when I wrote the post last night. I was a wreck on the way home from work – it all just kind of hit at once.
The on-call Gods are smiling upon me this morning and for some crazy reason – I’m on call! Craig is already on the way to Iowa City with Gannon, carver refused to wear pajamas for his pajama party, and I’m just chilling here on the couch typing this blog post.
I’m doing some more research on Gannon – there’s a condition called neural intestinal dysplasia which has a lot of symptoms that Gannon has. I’m reaching out to his GI team to see if we can do more imaging while we are down there as well. Maybe there’s a blockage higher up? Maybe we need to reach out to Milwaukee again?
I found another little friend named Anikin who struggles with much of what Gannon is struggling with. I reached out to Anikins mommy so maybe we could touch base. I find support groups extremely helpful.
I did get a message from the genetics counselor who said Gannons results should be in the next 1-2 weeks. I didn’t even know that it was a place you could call – I just know our blood samples are somewhere on the east coast.
Anyway, that’s all I know. Just trying to chill out. Thanks for all the support guys.
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.
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.
Hey guys – just wanted to jump on here quick and let you all know how Gannon is doing. I’ve gotten so many emails about how he is doing. You haven’t heard from me since last Friday when we had a really terrible day. Read more on that here.
As I’m writing this it is Tuesday afternoon and he has had a fever for 6 of the last 8 days, and his ear infection is 21 days old today. Gannon is not himself, is hesitant to eat, drink, or walk around. He’s pretty grumpy still. Gannon has been on three different antibiotics now and still is having fevers. Last night we were in urgent care again after he wasn’t taking a nap and spiked a temp again.
They did some blood work, Gannon’s white blood cell count was pretty low – normal is 5-10 and his was 2.2. There’s a number of reasons this could be – a virus, antibiotics he was on etc. but it does need follow up. Low white blood cell count can make it harder to fight infections which is probably why this has drug on so long. I’m sure there is a very simple explanation and when we get follow up blood work it will all be just fine. I just need to stay off of google in the meantime.
Speaking of follow up, it’s really hard with Gannon. He’s got a lot to consider. He’s got issues that don’t even have a diagnosis yet so it’s just really hard to approach this like a normal kiddo. Should we go to Iowa City? We only have specialists in Iowa City. Our GI doctor or our neuro doctor can’t help us with this. But Gannon may need more testing or different considerations that is more than our clinic can handle. It’s always a tug between the two.
Today he was woken up after 12 hours of sleep and then I had to wake him up from a 5 hour nap. He’s still punked out, still has a 101 fever, pale, has this sick look in his eyes. My mom gut is on high alert and I’m just trying to chill out until our follow up on Thursday and stay OFF OF GOOGLE. Because if I fall too far down the google rabbit hole I start looking at things like neutropenic fevers and pale and fatigue and low white blood cells and difficulty fighting infections and I’m not allowing myself to go there until we see how Thursday pans out.
I wish I had a better update. I tried posting my regular content but (and I mean this in the most loving way) people were more worried about Ganjo. And I am too. I’m ready to see the spark back in my peanut.