We tried to beat the ice storm on Tuesday. After I got off work at 7 pm, we drove the 2 hours down to Iowa City and got a hotel. Thank goodness we did (thanks for the suggestion mom) because the ice was THICK and many of the school districts were closed because of it.
Gannon’s appointment yesterday was okay. We don’t “love” our GI doctor.
I was hoping for “the answer” which wasn’t fair. That’s not reasonable to expect right now.
University of Iowa has done what they can. I had the conversation with our GI doctor. I said I don’t feel like we’ve been taken seriously. She got defensive and said “Well I’ve referred you to urology and surgery and more imaging isn’t helpful right now.” Which is true.
I expected the University of Iowa to be somewhere we could be officially diagnosed but they don’t have a motility clinic and they are also limited. All they can do is refer us on.
Gannon’s past two weeks have been complicated by an upper respiratory virus and possibly a stomach bug. It’s hard to say what is causing his vomiting. Maybe it’s related to his belly, maybe it is something different entirely, maybes it’s also related to a virus. All I know is Gannnon does better on formula than with real food. She dismissed that and told us to feed him whatever.
I asked how we can relieve his distention now. She said there isn’t much we can do. That’s when I asked about a G tube or a J tube (a surgically placed tube that goes directly into the bowels or stomach to relieve air and possibly deliver feedings). She said in her experience it doesn’t make much of a difference in kids like this. I have a feeling the motility clinic will say differently but again, we aren’t at the motility clinic.
That’s when I told her that his distention is a concern I need addressed before we leave today. She offered a rectal catheter but she said “I don’t think this will work or make much of a difference.”
The catheter is inserted into the rectum. It has perforations in the tubing to let gas out. Within five minutes, the room smelled like gas and Gannon had a noticeable decrease in his abdominal distention.
Our GI doctor said that the rectal catheter works well with treating Hershprungs kiddos and because it is working well for Gannon that leads her to believe this could be the chronic intestinal pseudo obstruction (CIPO). His distended bladder is also a sign of CIPO. Also his redundant or “extra” colon is also a sign of CIPO.
Just a refresher – they have tested Gannon over and over again for Hershprungs disease. That would mean there are NO nerves in the bowels/colon. That was what we were admitted for at St Marys. A biopsy ruled that out. CIPO is when the nerves or the bowel/colon don’t work. Manometry can test for that.
She also noted his liver is larger than normal on the X-ray. I’m typing this as we are waiting for an ultrasound of his liver. She said maybe this could be contributing to his distention.
I asked about genetic testing. She said the motility clinic would be able to tell us if that is a good option for Gannon.
We are planning on also doing an EGD (upper scope – like a colonoscopy only looking at his esophagus and stomach) when he has his testicle surgery in February. This will look at his upper GI tract and test for abnormalities. They may take a few biopsies then too.
Craig came with to this appointment which was so great. I like to have a second set of ears and I feel more confident being a stronger advocate for Gannon when I have someone with me.
I may come off as “fierce” or “strong” but when it came time to actually stand up to his GI doctor and say “I feel like we aren’t being taken seriously” it came out as “I just don’t know. I just….I don’t know…I feel like maybe we should be doing more….I don’t know.”
It’s hard. I don’t know as much as her. I really don’t. But I know Gannon. And I know this isn’t normal.
And I know what I’ve been reading on my CIPO support group. They are all an expert on this condition. They know the questions to ask and what helps and what doesn’t. They give me the courage to advocate.
I’m finishing this post as we are on our way home. The ultrasound took FOREVER. They kept coming back to his liver over and over again. Then someone else came in and took more pictures. It honestly took about an hour.
Gannon was so so so good considering how long it took! The lights on the ceiling helped too.
Milawakee is reviewing his case on Tuesday. I’ve been emailing Carly at the GI Access center there. She’s working on getting prior authorization from insurance and accepting the referral as well. She is one of those “behind the scenes” who holds a department together and I can tell she knows her stuff!
It’s a guessing game as to how long it will take to get into Milwaukee. Gannon’s doctor said she’s referred patients to Nationwide in Columbus Ohio and it’s taken 4 months to actually get in and be scheduled. Columbus’s motility program is also highly recommended but that’s about 10 hours from us vs. just 4 hours. Mayo (where we started this whole mess) is only 1.5 hours away but we weren’t impressed with them and they can’t do the full tract manometry that Gannon needs. So Milwaukee it is.
That’s all I know for now. Thanks for your well wishes. Gannon appreciates it too!
P.S. Gannon has always had “floaters” or “debris” in his bladder along with a distended bladder. The MD who finished up Gannon’s ultrasound noted that again today and showed them to us. Usually it is indicative of an infection but Gannon has never had one. Of course that never made it on the ultrasound report. All that was noted on the ultrasound of his organs was a “mildly prominent lover and spleen.” Whatever that means.
I said Gannon was doing better. He was doing much better. He went a whole 24 hours without throwing up last Thursday. But, Gannon is not better.
I want to preface this blog post with this: I know Gannon isn’t okay. We are working closely with his GI team. This include referring him on to a much more specialized care team. I know I need another opinion. We are working to get one. These things take time. I’m trying so hard to be patient.
Gannon has tummy troubles. If you are new to the blog, you can catch up on Gannon’s roller coaster here:
And last Thursday’s ER visit:
These will bring you up to speed.
Gannon began vomiting on December 29th. He would throw up at least once a day – sometimes up to three times a day. He had his ER visit, the next Monday he was STILL vomiting. We took him back to the doctor, blood work showed things were improving but now his belly was so big and distended.
Our primary doctor (who we LOVE) said he had an ileus which means a part of his bowel is so big and stretched out and full of air that it isn’t moving food through properly. There isn’t much to do about it but wait for it to pass. He was not “obstructed” but very slow moving.
This is the tube Gannon is set in for his xrays. He used to fight and scream but he’s pretty used to it by now. He’s looking at me like “really mom?” An xray confirmed that yes it is an ileus.
He still continued to vomit on and off through the week. He was eating table food SO WELL before he got sick. Now he sometimes couldn’t even keep formula down and we would give him apple juice or pedialyte for the rest of the day to rest his bowel.
Then last Saturday Gannon threw up again and his belly was even more distended. We sent Carver and Gannon to Grandma and Grandpa Debbie’s for the weekend. Gannon did pretty good there.
On a side note, Craig and I are planning AT LEAST one night a month where he goes to hang out with his buddies and I hang out with my girl friends. That was this weekend which was super fun! I think time apart is equally as important as time together!
Gannon came home on Sunday with a big huge belly. I was worried sick about him. I gave him his nightly miralax and sent him to bed. He was a bit wheezy (which isn’t uncommon) so we gave him a breathing treatment. Monday morning came and his belly looked like this:
I called his GI doctor and I told them I needed him to be seen. They are fitting us in today (as you’re reading this) we are on our way to the University of Iowa. Her and I have been emailing back and forth – she recommended being seen locally and getting an abdominal xray so we did. My amazing sister Kelli went to my mom’s house, picked up Gannon, and took him to the doctor.
When someone needs to poop, it is obvious on xray. The treatment for that is simple: POOP. Gannon’s bowels are full of air. FULL of air. The treatment for that is not so simple. I gave him an extra dose of miralax AND a glycerin suppository. It is very obvious Gannon doesn’t have any poop left to poop and yet this is his belly yesterday morning:
I chatted with his GI doctor this morning and she said we can hold off on any more stimulants until he is seen. It’s clear this is gas deep in his bowel and not an easy fix.
They told us to pack an overnight bag just in case. I’ll update what I know when I know it.
Gannon is really uncomfortable when he lays flat. He’s got a cold going on right now too. He’s very clingy and fussy. Other than that I don’t think he is much pain.
Next steps include a referral to Children’s of Milwaukee. It’s about 4-5 hours away. He needs something called manometry which measures the peristalsis (or the waves) in his intestines throughout his GI tract. They have an incredible motility center. I’m not sure how long the referral will take but I started the process yesterday.
We will also be requesting a nutritionist/dietician referral to see how and when it is safe to advance Gannon’s diet again. We also think he needs a referral to genetics to see if they have any insights to offer.
If Gannon has what I think he has, chronic intestinal pseudo obstruction disorder, we’ve got a long road ahead of us. He would be 9 of one million kiddos. We already know he is one in a million to us!
I’ve joined a support group on Facebook for this condition which has been so helpful and encouraging. I want to make sure I’m giving Gannon the best care in the country – even if that means driving hours on end. The people in the group are experts and have been so insightful.
We didn’t think much of it. Sometimes he finds a little piece of fuzz on the floor before we can catch him and he puts it in his mouth and it gags him enough so he throws up.
Mom messaged me while I was at work on Monday. Gannon threw up again. She had to change the sheets and his outfit. No fever, he was acting normal but mom wanted to let me know.
On Tuesday Gannon threw up twice. Now this was getting kind of weird. He had some respiratory junk and a cough so maybe that had something to do with it. No one else in the house was sick. He would act totally normal in between throwing up.
When Craig and I went out to eat on NYE he threw up all over himself at my mom’s house. When we got him home he threw up again.
I went to work on Thursday but I cautioned Craig to keep him hydrated and clear liquids through the night. Not to mention he hadn’t had a bowel movement in a few days either.
All night at work I just worried about him. I ran through every scenario in my mind and remembered all of his issues from when he was hospitalized and was convinced he had some kind of bowel obstruction.
I ended up calling down to the University of Iowa and spoke with a specialist on call from Gannon’s GI team. They told me to take him to the ER right away and that he needed fluids.
I brushed it off. No, he doesn’t need IV fluids. He’ll be fine. He looked fine when I left. He was still having wet diapers. He was still crying tears. That gastroenterologist didn’t know what they are talking about.
I ended up clocking out a little early after working 12 hour overnight shift so I could go home and see him and assess him.
I got home and Gannon was LETHARGIC like I’d never seen him before. In the 15 minutes I got home he had already thrown up. His eyes were open but he was limp. He looked miserable.
I didn’t even hesitate – I knew something wasn’t right. I took him right back to the ER. I was so confused though, he was acting dehydrated but he still was having wet diapers. I didn’t even know what could possibly be wrong.
I called my mom on the way there and she said, “Kalissa. You don’t have to have him diagnosed. You just have to bring him. Let them do their job.” I hate not knowing. I hate when the pieces don’t fit. I usually have some kind of inkling of what is wrong before I bring the kids in but with Gannon, I had nothing.
Gannon hardly flinched when they started the IV. He just melted into me. He slept, he slept hard, in between assessments and medications and tests.
After while they came in and switched his fluids over. They said his blood sugar was 50. Normal is usually 70 – 110. That’s pretty low.
Before I could even think “Oh my gosh does he have diabetes??” Fell out of my mouth. Which wouldn’t make any sense at all. When diabetics get sick their blood sugar goes UP not down.
But when I’m the one with the sick kid, I can’t think straight. It’s truly incredible how much my nursing instinct completely leaves me when it is my kid who is sick. I’ll call my mom and ask her what I should do for a fever or ask for medical advice. She finds that hilarious considering I’m an ER nurse.
Hour by hour he slowly started perking up. We were very close to being admitted for continuous fluids. His cough started getting worse and worse but he was perking up.
He ended up waking up enough to get discharged. He did throw up again at home that day and the next day. My mom was so sweet she let me sleep at her house with the boys.
I actually just got off the phone with mom and she said he just threw up twice again. UGH! Back to the doctor tomorrow morning. That will be 8 days in a row of vomiting!
I feel like those 129 days were awful. Everything progressed so quickly. We asked lots of questions to see if we may have missed something. Were the steroids that made him feel good actually bad for him? Did his surgery shake his tumor and spread the cancer everywhere? How long had the tumor been there? Have you ever seen cancer spread to the C2 like that? On and on, after about 45 minutes of tears and laughter, we got the closure we needed. By the end of the conversation, they asked us to be a part of Gundersen’s “Shine a Light” program.
Of course we agreed. We wanted to help spread awareness about lung cancer and screening for lung cancer.
Dad’s lung cancer was found on a “routine” CT scan to screen for lung cancer. Dad had been “slowing down” for a few months but we all just figured it was worsening COPD. By Christmas time, Mom had talked to him and was really concerned about his breathing and wanted him to ask his doctor for a CT scan of his chest.
He finally got up the nerve and asked his doctor for the CT scan. Dad qualified for the scan because he was over 55 years of age and had an 80 pack year history of smoking. Here is the criteria for screening for lung cancer from GO2 Foundation for Lung Cancer: https://go2foundation.org/
He got the CT scan where they found stage 3b lung cancer in his right lower lobe. It was a big tumor. In hindsight, this screening should have been offered to him when he turned 55. All patients who meet the criteria should be screened for lung cancer. It should be as normal as getting a mammogram or a colonoscopy. More specifically, we need to be focusing on patients who are high risk for lung cancer.
Existing High-Risk Criteria
You are between the ages of 55 – 80
You have a 30 pack-year smoking history
You are a current smoker or quit within the last 15 years
Across the country, Shine a Light events are being held in November for Lung Cancer awareness month to increase awareness, celebrate those who have passed, those who are being treated for lung cancer, and screening for those not yet diagnosed. Dad’s cancer team will also be attending the event.
And you guys I am so jazzed, they asked me to speak at the ceremony! They also said mom and I could give a speech together but Mom is letting me take the reigns.
I’ve got about a 5 minute time frame to come up with a speech about Dad, cancer, screening, lung cancer, WHATEVER I want to talk about!
If you’re in the area and want to attend, here are the details:
My mom was diagnosed with thyroid cancer in 2016. And yes, you are remembering correctly. My dad passed away from lung cancer this past June as well. More on that in another post.
Back to mom: A routine checkup with her new nurse practitioner detected a lump or a nodule on her thyroid. An ultrasound and needle biopsy (yes that it several giant needles into her neck to get a sample of the tissue while she’s awake) came back “inconclusive.” Not positive or negative, inconclusive. In other words, it might be cancer.
Mom had a choice: remove the entire thyroid, remove half of the thyroid where the nodule is, or monitor it. She opted to have the thyroid removed.
Surgery was minor. She recovered well. A few days later, the pathologist determined it WAS cancer and that it had just begun to grow into the blood supply to her thyroid making it Stage 3 Thyroid cancer. She was 50 years old then. And to think she had the choice if she wanted to remove it or not. We are so glad she did.
So mom has no thyroid. She does not want ANY thyroid tissue to grow back. Therefore she was prescribed A HIGH dose of Levothyroxine.
Levothyroxine is a pill that tricks her brain. It tells her brain to stop making any thyroid tissue. It says “Nah, we are good! We got this! Don’t stimulate the thyroid!” Which would in turn grow thyroid cancer cells. So during her recovery mom felt “normal” because her Levothyroxine was replacing the hormones her thyroid used to send.
Her surgery was in February and her cancer treatment/radioactive iodine was in April after her recovery. Mom had to STOP taking her Levothyroxine. For about 3 weeks mom lived without any thyroid hormones. It was hell.
Mom describes the symptoms she had when she was completely without any thryoid hormones as being “dry.” Every part of her body ached, every joint squeaked, her mouth and eyes and nose was so dry, she felt constantly dehydrated and constipated. Depression set in. Mom cried a lot. She felt so foggy and dizzy and whoozy and AWFUL. It was SO hard for us to see her like that. And then there’s the diet…
I’m trying to explain this the best way I can: Any cancer cells in her body needed to be completely starved of ANY iodine. That way, when mom takes the radioactive iodine, any thyroid cells or cancer cells are SO desperate for iodine they EAT the radioactive iodine when she takes the radioactive iodine pills.
That means she had to be on her very strict diet on top of having NO thyroid hormones (read more about that here: http://www.joscountryjunction.com/the-diet/ ) AND she had to be completely off of her thryoid replacement medicine.
Mom eventually took the radioactive iodine and was able to restart her hormones. Mom’s blood test, thyroglobulin tumor marker (let’s call it her TTM because that’s too long of a word to type, indicated the thyroid cancer had been TOTALLY irradicated as of October 14th, 2016. That means her TTM was 0.00 about 10 months after diagnosis.
Can you believe that is CARVER she is holding?!
Here’s a picture I snapped the day we got the good news:
In the meantime mom had had blood draws every 6 months to monitor her thyroid cancer. Her TTM began creeping up about a year after she took the radioactive iodine.
At first it was just minor – detectable at 0.04 or something. But it began doubling every 6 months. They kept telling us not to worry too much about it, we aren’t worried about a reoccurrence until it is above 5 or 6. At level 10 there is a reoccurrence somewhere. Every 6 months mom would go on her iodine free diet, get the full body scan, PET scan, get a chest CT scan, get the shots, get her blood drawn and usually get some kind of biopsy.
Over and over again mom’s scans came back clean and the biopsies came back negative. We played the “wait and see game” watching her TTM numbers double until they were 6.2 last April.
NONE of the scans showed anything. They have been watching the cancer grow and her numbers rise but they can’t find where it is in her body. About a month ago, moms number had gone from 6.2 in April to 17 in September. Mom had her blood redrawn on Monday and it was 26.
Her TTM number went up 9 points in less than a month. The cancer is back and we have to find it before we can treat it. We have to find it and surgically remove it before we can give her the radioactive iodine to give the best chance at fighting the cancer.
Which brings us to today: Friday. October 18th. Mom will be getting ready for Lacrosse as you read this. She has her scan in the morning, then she is going to EAT real food, and results in the afternoon.
We hope they find the cancer.
We hope it can be surgically removed as much as it can be.
We hope for strength to get us through whatever the results say.
I say we, because mom’s fight is our fight. In this family no one fights alone. We are #KramerStrong
If you have a Kramer strong t-shirt – wear it today! I’d love to see it and I know mom would appreciate the cyber support! <3
P.S. Just reading back through this it doesn’t seem to do justice to all that mom has been through in the past 3 years. This is a very condensed version. This doesn’t include all of the tears, the wondering, the questioning, the fear, every needle, medication, poke and prod.
“I’ll paint the kitchen neon, I’ll brighten up the sky I know I’ll never get it, there’s not a day that I won’t try”
– Soon You’ll Get Better by Taylor Swift ft. The Dixie Chicks
She wrote this beautiful heart wrenching song about her own mother’s battle with breast cancer and it really hits a nerve. Get your tissues guys.
I feel like the hype around Gannon’s appointment is not going to live up to what the actual appointment was. I’m just trying to manage expectations here.
So remember Gannon’s procedure? The rectal catheter and the contrast and the xrays? Remember he cleaned out afterwards? His tummy immediately was SOFT and his skin was so wrinkled – not taught like a balloon.
With various other interventions (a little too much to get into depth) he has continued to improve over the weekend to where now his belly looks normalish, he isn’t crying when he poops, we are overall pleased with the progress we’ve made.
We met with the pediatric surgeon and his team who were absolutely awesome. They throughly addresses every concern we had.
First of all, they AREN’T as concerned with the functionality of his anus/rectum which was a concern. As it turns out that was the only reason they even consulted surgery.
Gannon’s rectum/sigmoid colon is on the right side of his abdomen which is unusual but is okay.
Gannon may have “lazy intestines” and low motility which there actually isn’t a ton of research on. There are hospitals in Dublin and Greenland that can properly work up the nerve function and muscular function of the intestines but obviously not in the USA.
Prune belly syndrome is almost completely off the table – they say his belly just isn’t wrinkly enough. They said there could maybe possibly be some kind of variant but the kidneys look good.
Gannon will have the testicular surgery in January.
Why isn’t Gannon able to sit up by himself? We aren’t sure. We are going to monitor it. 10 months and we should be worried. He will be 8 months on the 25th.
We are going to keep our speech/swallowing evaluation for next Thursday.
Why is Gannon’s belly so big? Imagine a balloon that you blew up and deflated. It’s all stretched out still. That’s what they think has happened to Gannon’s colon and abdominal muscles. They think once his belly has been decompressed for several WEEKS we will start to see improvement. This includes keeping his stools soft.
A condition called Abdomino-phrenic dyssynergia is a failure of the abdominal wall muscle contraction and diaphragmatic relaxation to limit abdominal distension was brought up and talked about. This would explain a quiet cry and abdominal distention. Strengthening the abdominal muscles good help this but they weren’t ready to diagnose him with it.
We are on the wait and see schedule but that’s OKAY. We are going to try this for a few weeks and report back.
Gannon is HAPPY and CONTENT and doesn’t seem to be in PAIN.
We left about 6:40 am for a 9:00 appointment. First was our appointment with the urologist.
I brought up all of my concerns, why I thought he might have prune belly, we talked for a long time. He had a resident with him and she was very attentive as well.
The main lobby of the children’s hospital – pictures don’t do it justice!
There are several yellow flags that aren’t enough of a problem to hand out a diagnosis of prune belly. The number one reason his because his kidneys appear normal on imaging. Yes his bladder is consistently large. He does seem to have some sort of abnormal ab muscles and his testicles have not descended. But none of these symptoms are enough to cause a diagnosis. He went through each set of imaging with me and explained why he thought this was gastrointestinal tract related. This was helpful. He said maybe it could be a “variant” of prune belly but to use that as a last resort diagnosis AFTER he sees GI. We will set up a surgery with them in the next few months.
On to GI. Our main concern with GI is that Gannon cries when he poops and why does his belly look like that?
The Pediatric Specialties Clinic – this whole hospital is so well decorated and shiny and new 😍😍
GI thinks it still could be prune belly because if it is a variant their kidneys can appear normal but the distended bladder would be enough for a diagnosis.
GI ordered a “lower GI series” which consisted of Gannon being strapped down, a catheter inserted into his rectum and fed through the large bowel while administering contrast. Lots of contrast.
They had to strap Gannon down with his arms above his head to get the imaging they needed. He didn’t like that much but it had to be done. Motherhood is not for the faint of heart!
The staff were amazing. They did such a good job of explaining and taking care of Gannon. It was hard to watch but they made it okay.
We went to lunch after that while we were waiting for the images to result. Isn’t this a beautiful hospital?
In the meantime Gannon was…expelling the contrast in large quantity. I went to change his diaper, he started crying/pushing and PROJECTILE poopy contrast all over me and the bathroom, my pants, shirt, shoes, the floor, the changing table – everywhere.
The poop-explosion that I wore for the rest of the day! Not to mention my pants or shoes!
I stood there in shock for a good 3 minutes trying to figure out what to do. I wiped off as best as I could – I used all my wipes and I asked the receptionist to put the bathroom out of order until housekeeping could come 🤦♀️🤦♀️
Anyway, here’s what the lower GI study showed:
Gannon’s anatomy of his large bowel is abnormal. There’s lots of extra bowel, they call that “redundant.” Instead of the colon going to the left it goes to the right. He had monstrous amounts of stool his his colon despite being regular. His anus also appears abnormal. Possible prune belly. Possible Herschsprungs. Possible Chronic pseudo obstruction. Possible anus imperfecta. At this point anything is possible.
The contrast lights up the path of his large images tone
They consulted surgery who wants us to come back on Tuesday after the surgeon review his case. Likely whatever Gannon has needs to be fixed or diagnosed with surgery. So that will be 3:20 pm on Tuesday next week.
They listened to me. They believed me. The validated my concerns. They took action. They got other departments involved. This is not sad news – this is wonderful. To hope they would tell us “he’s just fine” is not what we want right now. We know there is something wrong and we want answers which I think we will get much closer on Tuesday.
Thanks to all who have reached out. I’ll let you know what I know when I know it.
By the time you’re reading this post, my 7 month old son Gannon and I are likely well on our way to Iowa City to the Stead Family Children’s Hospital. We’ve been awaiting this appointment for over a month now.
If you follow my mom’s blog or my personal Facebook page, you probably are aware of Gannon’s health issues. I say health issues because, well, we don’t have a diagnosis yet.
First of all, this is a little odd sharing with the world but it is just a body part: Gannon’s testicles never descended to where they need to be. I’m telling you this because it is an important part of the story. One is still hanging out up by his bladder and he will need surgery in the next few months to fix this. Anyway, onto the rest of the story…
Last March, Gannon was barely 6 weeks old. I brought him to the doctor after he had projectile vomited a few times and had like a 99 degree temperature. While assessing him we noticed Gannon’s belly was way over distended.
An abdominal xray showed LOTS of gas in his bowels and “the rectal vault was empty” therefore suggesting some sort of illeus or blockage somewhere in his digestive tract. The next day he wasn’t any better and he started having these “screaming spells” where he would pull his legs up to his chest and just scream every 5-10 minutes or so.
We brought him to the ER where I work this time instead of the clinic. They did an ultrasound – they found something called “intermittent intussusception” – his bowel was telescoping into itself.
We were sent to St. Mary’s Hospital in Rochester (the hospital associated with Mayo Clinic) and in the ER they repeated the ultrasound, did a rectal exam, started an IV, catheterized him for a urine sample and decided to admit him for further testing.
The ultrasound showed that the intermittent intasussception had relieved itself but while they were checking out the other organs, they couldn’t see what they needed to because his bladder was so distended/large and they saw “debris” in his bladder. That was about all that was said about it. This is a significant part of the story but not until just recently.
They also found during his rectal exam that he had a very narrow anus, rectum, and even colon. They were suspicious of Herschprung’s disease which required a rectal biopsy which eventually (4 days after he was admitted) came back negative.
I’ll be honest, our experience with Mayo wasn’t great. Testing took FOREVER. There was plenty of sitting and waiting. I had to beg them to give him Tylenol for when he was screaming. We were admitted on a Friday – he got a CT scan, a rectal biopsy was done at bedside, and that was it. We didn’t get any results until TUESDAY when they promptly rushed us out the door when all results came back negative. They told me to stop breast feeding because maybe he was allergic to milk. We bought really expensive formula to try at home. They told us to use glycerin suppositories to relieve his belly distention which was still very much a problem.
The CT scan at mayo ALSO confirmed he had a large distended bladder – but again – no one said anything.
I asked for a referral the the University of Iowa – about 2.5 hours SOUTH of our house. The referral was sent on Friday morning. I had a call by 12 pm telling me to come down to see a gastrointestinal specialist at 4 pm THAT DAY! Talk about service! We spend an overnight at the University – a brand new children’s hospital and had an xray, blood work, an ultrasound all by about 7 p.m. that night.
They rounded on him the next morning. They dismissed everything that Mayo said – he could breastfeed and he didn’t have to do any “anal dilation” and while they didn’t know why his belly was so big, he was released that day. A 16 hour hospital stay told us more than a 5 day hospital stay at Mayo.
While I wasn’t convinced that Gannon was “normal” I felt at peace with the U of I’s conclusion.
Flash forward to August 2019:
Gannon was 6 months old and he is NOT sitting up by himself – not even trying. Which isn’t a huge deal but something we have been monitoring. He’s almost 8 months now and while he’s “better” at sitting up he still topples over and can only sit up if he is using his hands to support him.
Gannon’s belly is still so big. He has soft spots in his belly. If he drinks a bottle I can feel the fluid slosh up against his stomach if I hold my hand over his belly.
Gannon cries every time he has a bowel movement – just screams – but his feces are soft and not what you would expect for constipation.
Gannon breaks out into this rash after he eats baby food. We still aren’t sure what is causing that.
Gannon chokes very often. Crackers are hard for him, even baby food will send him into a choking fit.
Gannon doesn’t babble or practice talking like other babies his age do and sometimes he isn’t very good at engaging or maintaining eye contact.
I think I have Gannon diagnosed. We won’t know if I’m right until tomorrow after we see the genito-urinary specialist:
I think Gannon has something called Prune Belly Syndrome (PBS) or Eagle-Barret syndrome. However this is usually diagnosed during an ultrasound during the pregnancy. If Gannon has this it would be a variant of the disease.
The three symptoms of PBS is undescended bilateral testicles, weak or missing abdominal muscles, and distended/large/not functioning urinary tract organs.
Gannon has all three without any further testing. Remember they couldn’t see his GI tract because his bladder was so big and descended? Remember it showed he had “debris” in his bladder? Remember his testicles haven’t descended? The big huge belly could be explained by weak or missing abdominal muscles. That’s probably why he isn’t able to sit up yet.
So as symptoms have progressed this past August/September we are again referred to the GI specialty and now GU. Both of those appointments are early tomorrow morning. Here’s what I hope to gain:
a surgery date for his testicular procedure
further imaging of his GI tract – preferably a VCUG (voiding cystourethrogram)
GI to advise on why he cries every time he poops (probably a rectal exam to determine if he needs more imaging)
I’d like to know how many abdominal muscles are actually present
How do we build up the ab muscles he has?
How do we monitor him long term?
So that is that. I feel crazy sometimes. Obviously something is not right but obviously he’s growing just fine. I do know what a sweet personality he has. We love him so so much. His diagnosis won’t change the way we feel about him whatsoever.