The Gannon Update – July 2021

If you’ve been a long time reader, you know my son Gannon has faced many health issues in his 2 years of life starting with hospitalization at 6 weeks old. Many tests, procedures, surgeries, later, he was finally diagnosed with something called anal achalasia which is also a form of Hirschprungs disease. The nerves in his anus don’t allow for relaxation and passing of stool causing extremely painful defecation, bloating, abdominal pain, and constipation. Gannon’s quality of life did a total 180 after he received botox to correct this malformation and other than varying degrees of constipation and a speech delay, Gannon lives a fairly normal life.

Though he tested negative for any genetic disorder, there is still a suspicion Gannon has a connective tissue disorder that can only be diagnosed as he gets older – closer to 6 years old or so. This causes various other health issues that require monitoring.

Early July we had an appointment day in Iowa City. We followed up with cardiology, we got an echo of his heart, and we saw urology. There was some concern that Gannon had dilated blood vessels in his heart (common with the connective tissue disorder) but those have since resolved. There was also some concern that Gannon has a hole in his heart called a PFO (patent foramen ovale) which is pretty common actually. BOTH of these issues have (mostly) resolved and Gannon no longer needs yearly cardiology follow up! They will see him again when he is 5!

Gannon also was born with undescended testicles and bilateral inguinal hernias. He underwent a surgery to correct this on his first birthday that was unfortunately unsuccessful. The right testicle will not work or function normally and is essentially “dead.” We follow up with urology to make sure that there aren’t any complications with that. We see Dr. Storm and if your child EVER needs a urologist, we 10/10 recommend him. He is our favorite doctor in Iowa City. He also said no need to follow up until kindergarten!

Gannon still gets REALLY sick and I wouldn’t be surprised if he struggles with asthma as he gets older. He’s had pneumonia twice now and has troubles breathing when he gets a cold. He’s regularly on steroids and breathing treatments or antibiotics for an ear infection.

Gannon still goes to speech therapy every Thursday which he just LOVES! We’ve seen so much progress in the past month it just blows my mind. I’m so proud of how far he has come and how hard he is working! We’ve fought so hard to get him to this point.

All of that fighting for answers and back and forth has all been worth it to get to this point where Gannon lives mostly pain free and is a normal kiddo! He is so goofy and always has us laughing. He loves legos, onion rings, and to play by himself. He melts any time he sees a baby and gets along with just about everyone. We have made ZERO progress on potty training but I’m not expecting any miracles in that department any time soon!

Many of you have been wondering about how he is doing since his bout of pneumonia last week and we honestly aren’t 100% positive it was pneumonia – Carver also started getting sick about a full week later with the same exact symptoms – so did several other kids at daycare. So who knows. Either way they are both coughing and hacking still but we are FEVER FREE and I’ve been home all week with them. It’s a very distinct loose congested cough. Gannon’s coughing fits are over which thank goodness – that was so hard to watch.

Thanks for reading friends!

To read more about Gannon, I’ve linked a few blog posts here:

Gannon Update – December


Gannon Update + Botox didn’t work + Tuesday AM update

Gannon Update: Botox Round #3

Milwaukee Day 1: Bowel Clean Out

Milwaukee Day 2: Overnight and Pre-Op

Milwaukee Day 2: A New Approach

Milwaukee Day 3: A DIAGNOSIS and treatment plan!

Milwaukee Day 3: MRI, COVID, and Evening Update

Milwaukee Day 4: HOME + MRI Results

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Gannon has Pneumonia + Weather Spotting!

It was an INTERSTING past few days to say the least! Gannon was sick like 2 weeks ago – typical virus – coughing, sneezing, runny nose, etc. His cough never quite went away. He got better but never fully recovered. On Tuesday night, Gannon was pretty whiny and clingy. I thought maybe he felt warm. He was coughing some more. I didn’t think much of it.

On Wednesday morning he woke up with a low grade fever and seemed to be coughing more. The boys had an eye doctor appointment in Decorah anyway so I thought I’d swing by the clinic and have Gannon checked out. I wanted to make sure he wasn’t getting yet another ear infection. Gannon seemed okay but had a tiny wheeze so she suggested to dose him with steroids and continue breathing treatments. We were hesitant to jump on antibiotics just yet because his symptoms were so mild. We got ice cream and headed home. Gannon had a coughing fit in the car – he coughed so hard he vomited that ice cream right back up all over his car seat.

On Wednesday evening, Craig came home early. We had an early supper and then the pager went off – severe weather. Most of Northeast Iowa was under some kind of tornado watch or warning. Craig and I are both storm spotters so we headed to the fire station to deploy. We dropped the boys off at moms. Gannon seemed to be coughing a LOT more but we had a duty to serve! Craig and I took the rig and watched the storm. Several tornadoes touched down within about an hour’s distance from us but we hardly got anything more than rain.

We were headed back to mom’s house to pick up the boys. She told me Gannon was not well, just laying on the floor coughing and coughing. We went and picked him up, did a breathing treatment with him but nothing helped. HE JUST WOULD NOT STOP COUGHING – for an hour I sat with him on the couch and held a bucket – cough cough PUKE cough cough gag PUKE. It was terrible for all of us. He couldn’t keep anything down – but not because he was actually vomiting but because he was coughing so hard he gagged and puked. His face was so swollen and puffy.

We went back and forth – take him in or not – by now his fever was 103 but he couldn’t keep anything down. We decided to lay him down and see how the night went. By 4 am his fever was even higher and he was lethargic. I drove him to the ER I used to work at and was so delighted to see my old night shift crew who took such good care of him. We decided to rule out COVID and RSV and Influenza. By now, we’ve all had COVID swabs and know how uncomfortable and painful it can be. Gannon didn’t even cry and he had to have two swabs. We also gave him antibiotics and THANKFULLY he kept them down so we didn’t have to do shots!

By process of elimination and the history of a virus two weeks ago, he was diagnosed with pneumonia. His oxygen was good and he wasn’t coughing as hard. We got to go home. I had to stop at Walmart and get rectal Tylenol in case he started throwing up again and the poor guy just laid his head on the shopping cart like this the whole time:

I felt so terrible even bringing him in the store but I couldn’t leave him in the car! Poor guy. We got home and we both slept from 7 am – 11 am and then again from 2 pm – 5 pm. We were both tuckered out and that fever would not let up! I’ve never seen him so punked out and this kid has been through the ringer.

Anywho, that’s our update for now! Thanks for reading guys!

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Gannon turns 2!!

My sweet little peanut turned two on Thursday! Craig and I tried to wrestle him for a selfie – he has been HATING pictures lately!

It’s hard to tell who was more excited about opening gifts – Carver or Gannon. Carver needed several reminders that these were GANNON’s gifts and not his. We’ve been working on letters and numbers with Gannon so we got him a few puzzles that we used with Carver (and subsequently lost all the pieces too)

Here is a link to the ABC puzzle that literally taught Carver his letters by the time he was 2. We worked on them every morning at breakfast while we ate our waffles. This is a GREAT and CHEAP gift for any 2 year old:

Here’s a matching letter puzzle too:

Again, we are really working on letters at home – we’ve had several of these leap frog refrigerator toys and eventually, the pieces dwindle down and we get another one because we love it so much! This one was a bus one that I got for him – he LOVES watching Carver get on the bus – he is always talking about BUS and his favorite color is yellow so it was perfect! I also got one for my niece Georgia – a great gift for a two year old. Here is the link:

Gannon has been carrying it around all morning! I was on a Zoom call for an interview for the paper and in the background the whole time Gannon was playing the wheels on the bus! More on that interview next week….

As we always do for birthdays, we all went around and said something we loved about the birthday boy, we all agreed Gannon is the calm to our chaos, such a sweet and gentle soul (unless you give him the wrong sippy cup) and we just love his nature.

In other news, Gannon had a huge blow out this morning – he needed to be immediately placed in the bathtub. Why am I telling you this? BECAUSE I COULD SMELL IT! THIS WAS THE FIRST POOPY DIAPER I COULD SMELL SINCE JANUARY 10th WHEN I WAS DIAGNOSED WITH COVID! I was never so happy to clean up a dirty diaper.

We are just chilling this morning, hanging out. I’ve got a work day planned out and he is content playing with his legos and watching TV. He’s just my hangout buddy.

Here’s a picture of Carver and Gannon exactly on the day they turned two – my boys look NOTHING a like – which is fitting because they act nothing alike too!

Anyway, thanks for reading friends! We will check in again tomorrow!

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Gannon Update!!!

Today was an amazing day – we learned more about Gannon today than we have in a long time.

Gannon has not been back to his normal self in…a long time. There was COVID, then the 13 days of vomiting, then this week brought the worst, most painful bowel movements Gannon has ever had. He spent a full 24 hours either in the fetal position or screaming and straining to have a bowel movement or he was just so clingy and fussy – straining so hard his eyes rolled back in his head for a minute. It was the worst we have ever dealt with. Mom and I and Gannon were all crying. I had enough.

I called Iowa City and I called our old GI doctor at Milwaukee. Something has got to give after nearly a month of misery. Our Milwaukee doctor got back to me first – he told me several things:

  1. A normal genetic test does not rule out a connective tissue disorder. Up to 30% of kiddos with Ehlers Danlos Syndrome test negative for the condition.
  2. He is leaving Children’s of Wisconsin next week. He is going to launch a new motility practice (I think in Chicago) and we are welcome to see him there.
  3. Gannon needs an X-ray when he has trouble pooping. He needs an X-ray to see how backed up he is, then he needs to be aggressively “cleaned out” to give us a fresh start. Then he needs a follow up X-ray to confirm he is cleaned out. THEN start the bowel regime back up (Miralax BID and Senna daily). Give it a month, keep a diary of his poops and meds and symptoms. He recommend the clean out is done under close supervision and said if we lived closer he would bring Gannon into the hospital to do the clean out.
  4. If Gannon is STILL having problems, he needs to go to a motility specialist again. He needs to get Botox again, it needs time to work (2 weeks) and then he needs to be fully cleaned out again and have the anorectal manometry again to see if the Botox works. If it doesn’t work, Gannon needs to be referred on to either Nationwide in Columbus, Ohio or Boston Children’s hospital for a procedure called a manectomy. Only a handful of surgeons in the country are qualified to do this. Under anesthesia they make a cut in the internal anus. If they cut the muscle and not the anus, Gannon would be incontinent for the rest of his life. This is extremely risky and would be a last resort.

So we are super sad that he is leaving Milwaukee but we will likely follow him wherever he goes.

With that, I called our PCP to get an X-ray like he recommended- they said he has to have an appointment and we can’t just get an X-ray. Okay, fine. I questioned whether or not we even needed one because Gannon had gone several times since yesterday – figured he was starting to get cleaned out.

We saw my doctor who has never seen Gannon before but he was AWESOME and totally agreed with our GI doc’s plan. We got an X-ray.

Gannon is backed up to high heaven. HARD stool throughout the intestines – even with daily miralax, even with having several bowel movements, even with the stimulants. So much so, he offered us to be admitted to the hospital for a full clean out including enemas and an NG tube to give him fluids to make him go – attack from both ends.

I declined, as an ER nurse I’ve given plenty of enemas in my day. This was nothing new for me.

We learned so much about Gannon today – we have a plan. We now know we can’t rely on regular bowel movements to tell if Gannon is constipated. He will probably need regular X-rays and clean outs to make sure it doesn’t get to this extreme again. I feel validated. I feel like the power is back in my hands. I feel like it isn’t my fault.

While he isn’t vomiting anymore, that likely had something to do with this. I just know that I never ever want to go through what we witnessed yesterday again. That was so so hard to watch. It was terrible. I wouldn’t wish it on my worst enemy.

Is this all TMI? Probably. But in our house, poop is a very important subject. Nothing embarrassing about it. Might as well be telling you about a bum shoulder or a sore throat. We need to normalize it for Gannon.

Anyway, thanks for reading friends! Cheers to progress in management of Gannon’s constipation!

Gannon Report…again

My sweet boy is still sick. He’s still puking, still irritable, still cranky, still not himself. Even with anti-nausea meds, today was rough.

He fell asleep at the dinner table today, didn’t even get an hour nap in before he woke up vomiting.

He coated me this morning while I was holding him – we both needed to shower STAT so I called mom who came over to help the boys get through the bath while I showered.

Even when he was a little more perky, you can tell he doesn’t feel well.

I’m just not sure what else to do at this point. We’ve consulted with our primary doctor and our pediatric gastroenterologist and quite honestly, he needs to stay hydrated. As long as he stays hydrated (I’ve been really careful to be sure of that) they’ve given us all the meds he can have.

Without any further symptoms (fever, pain, headaches, runny nose, cough) – I’m glad he doesn’t have any of that – there is a good chance this is just cyclic vomiting which has no rhyme or reason – it just happens and will go away on its own.

Tonight Carver went to bed early (he was CRANKY) so we got to spend time alone with Gannon and we started to see glimpses of our sweet boy again. He was giggly and happy and I can hear him sneaking out of his crib again as I type this.

We are just exhausted – loads and loads of laundry and washing sheets and several baths a day – he has yet to vomit in the toilet or a bucket so you can imagine how immune to puke I am by this point.

I work the next few nights in a row. We are hunkered down, listening to the wind howl, we got a TON of snow today and school was closed. School is already delayed tomorrow too.

I’ve been working on a few top secret projects with my spare time too that I can’t wait to share with you! I’ve been hinting at in on my facebook page so keep checking!