Gannon’s Surgery: Complications Part Three

So there we were – admitted to our ninth floor room. Craig had left and it was just Gannon and I.

Gannon slept for most of the afternoon but was fussy enough he always wanted me to hold him. He was prescribed oxycodone which was a pretty strong narcotic pain medication and we gave that to him but sparingly because it can really cause constipation and God knows Gannon doesn’t need that.

The child life specialist on the floor found out it was Gannon’s birthday and brought him toys! Not just to play with, but brand new toys still in the package for Gannon to keep and take home! How sweet was that?

We ended up getting to bed around 10 pm. By 11 I woke up to our night nurse Jody talking to someone in the room. She was on the phone with anesthesia and paging them to assess Gannon. His breathing was worse again and he had that barky coupy cough that he had after anesthesia. Gannon’s oxygen was okay but he was working to breathe.

The urology resident also came to assess him and agreed that we need to give him a breathing treatment called racemic epinephrine which is specific to the upper airway. Gannon wasn’t able to get any more steroids because it had only been 12 hours or so since his last dose.

That really helped Gannon and we both went back to sleep. I was so dang tired – also keep in mind I had been up since 4 am the day before. I didn’t wake up until 8 am – the pull out couch as actually pretty comfy!

The nurses reassured me that they had been taking care of Gannon and that Dr. Storm would be rounding soon. Of course when he did come, Gannon’s breathing still wasn’t super and he wanted to keep him for just a few more hours to make sure he didn’t “rebound” from the racemic epinephrine treatment which means that his airway would swell up really fast again.

Gannon watching Blippi on Youtube on his room’s tablet

I ordered breakfast on the room’s tablet – check this out. I can browse the internet, watch Netflix, order food, control the TV, review test results, see who is on my care team, see scheduled medications for Gannon, it is so cool!

We ended up going on a walk around the unit. It you’re familiar with the University of Iowa’s children’s hospital, you may know they are known for the “Iowa Wave.” Kinnick stadium is right across the street from the University of Iowa’s children’s hospital so during every home game during the third quarter, the entire stadium turns and waves at the children watching the game from the hospital. The athletes do a ton of PR with the children’s hospital as well. It’s really a cool thing.

I wanted to get out of the room for a bit, a volunteer came and asked if she could take Gannon for another walk – YES! That was exactly enough time to get some air, get some coffee and refresh. By then Dr. Storm had rounded and we were ready for discharge! I’ve been in the hospital enough to know that “ready for discharge” means “you might leave in three hours.”

They coordinated our appointment that was originally scheduled for Thursday morning which is a texture swallow study so we got that taken care of before we left so we didn’t have to drive back the 2 hours both ways the next day.

The swallow study was disappointing. Gannon does okay with graham crackers, pudding texture, milk, puree etc. Anything more than that Gannon coughs, gags and chokes. Well they did the test. We found out Gannon does great with graham crackers, milk, pudding and puree baby food! Seriously – that’s all they gave him. I pointed out that yes we already know he does well with those foods but try giving him a tiny piece of kiwi and see how that goes. *sigh*

Not to mention, Gannon is usually so calm and chill for tests. Not the swallow study – he was MAD. It did not go well. To have put him through that to find out what we already know was annoying. Not to mention it delayed our discharge by about 3 hours.

We made it home about 6 pm, ate some pizza, bathed the kids, and we were off to bed. I dosed up Gannon with Tylenol and Ibuprofen. Everything went just fine until 4 am…

Okay – off to bed. Check back again tonight at 5:30 pm for hopefully the fourth and final chapter of this roller coaster of a week.

Gannon’s Surgery: Complications Part Two

Whew! Are you still hanging on from that cliff hanger?

If you aren’t sure what I’m talking about, here’s this morning’s blog post – you should read it first or this post will be rather confusing.

After he left, he told us that Gannon was in recovery and we could go see him soon and someone would come to get us. We waited..and waited..and waited…45 minutes had passed. Where was Gannon?

FINALLY – probably a full hour after Dr. Storm told us the surgery had gone well, I was about to go ask someone what was going on, our nurse offered to take us back to recovery so we could see him.

Gannon’s recovery nurse Liz was busy working with him. Gannon was pretty slow to wake up but doing okay with some extra oxygen. Here is what we walked into:

It was kind of scary – I won’t lie. She was having trouble waking him up so I started talking to him. I couldn’t wake him up either – until I told him “Gannon! Mommy has a Ba-Ba for you!” (That’s what we call his bottle) and he started coming around.

Then things really got freaky, Gannon started coughing and coughing and having stridor – I found a video of what croup sounds like so you can hear what we heard. Gannon was struggling to move air through his larynx/voice box not only when he coughed but just when he was breathing.

I have heard this cough 1,000 times in the ER around 3 am. You can hear them checking in and everyone goes “Yup! That’s croup!” Carver had croup A LOT when he was little. It’s a narrowing of the upper airway.

Our nurse Liz seemed super surprised too. She called anesthesia right away and explained the situation. Usually Decadron (a steroid) does the trick and reduces the swelling so that’s what was ordered for Gannon. Just in general Gannon’s breathing wasn’t super. He had a lot of loose congestion and rattled when he breathed. We assumed the airway swelling was a result of the intubation from the surgery.

We were finally sent back to our previous room and now it was time to get Gannon to eat and drink. He was doing pretty good. They had given him Tylenol in the OR. They gave him a dose of Toradol in his IV, he still had the caudal block, and a dose of oxycodone. He was still pretty zonked from the surgery but overall recovering well except for that darn stridor/cough. We were actually told we were ready to be discharged and I asked if we could stay just a little longer until his breathing seemed better.

Gannon was comfortable – and then he wasn’t. Gannon started SCREAMING. He cried and cried and screamed and nothing made him comfortable. I couldn’t comfort him at All. He had already received all the pain meds he could get and he was still inconsolable. Craig and I rocked him and bounced him and tried laying him down. We even tried putting ice over his diaper to help with pain/swelling/bruising. This went on about 45 minutes. Our arms were jello from holding him and passing him back and forth.

Then Dr. Storm showed up at our door. He was surprised we were still here. He took one look at Gannon and said “We need to tuck him in for the night. There’s no way we can send him home with pain like this. Would you guys be okay with that?” YES. Not to mention every time Gannon became upset his breathing got worse and worse.

I LOVE that I didn’t have to ask or question anyone whether or not we could handle his pain at home. I so appreciate that Dr. Storm took lead and made the call to admit him. Our nurse Kelly totally agreed and we talked about how helpless we felt when he was screaming like this.

This was all great and fine but I had some phone calls to make. I took a walk to the cafeteria and got some AMAZING vanilla bean cheesecake and I called mom.

As much as Gannon is a priority in our life, Craig had a very important test to take the next day to become certified in pesticide application before planting season. Craig has been studying for weeks and it’s really difficult to reschedule. We needed to get Craig home. I would stay with Gannon. (by the way, way to go Craig! He passed with flying colors!)

So began operation skinny Pete – ha! You can read that post here if you’re up for a good laugh:

Craig stayed long enough for us to get settled into our BEAUTIFUL room for the night:

Check out our view! We were on the ninth floor room nine which happened to be the exact same room we were in when Gannon was hospitalized a year ago! What are the odds?

Gannon in the same room and same bed as when he was hospitalized at 6 weeks old at the University of Iowa

Well, again, what a long blog post. I’m going to break this up into two more chunks. Sorry guys, nap time is calling me and the boys! Check back tomorrow morning At 5:30 am and tomorrow evening At 5:30 pm for the rest of the saga.

Find out about the rest of our hospital stay, the sweet thing they did for Gannon’s birthday, why Gannon is now on antibiotics, and why we had an ER visit this morning at 0430 am!

Gannon’s Surgery: Complications Part One

Remember how I said I wasn’t going to post about Gannon for a fourth day in a row? I lied.

As many of you know, Gannon’s “simple” procedure got a lot more complicated than we expected. We ended up staying a full 24 hours in the hospital longer than we initially expected to.

The lobby of the children’s hospital is BEAUTIFUL!

Gannon was scheduled for an orchiopexy surgery. When a baby boy is forming in utero, the testicles begin in the abdomen and move their way down into the scrotum. Gannon’s left testicle made it about halfway there and then came down on its own when he was about 3 months old but the right one never did. This is fairly common and a simple procedure around the age of one can take care of it. They end up pinning the testicle in place.

Craig and I woke up early Tuesday morning – our alarm was set for 4 am. We live 2 hours away from Iowa City where Gannon’s specialists are and the University of Iowa Stead Family Children’s hospital. Our arrival time was 7 am so we needed to be on the road at least by 4:45.

We got all settled, got into our PACU (peri anesthesia care unit) (aka your room where you prep for surgery and recover from surgery). About a million people came and introduced themselves to us and asked a million questions each.

We met a few of our favorites who stuck with us throughout the day. Dr. Storm is Gannon’s urologist. He came in and introduced himself again. We had only seen him once in October for Gannon’s pre op appointment. He explained the procedure. He had several people following him and learning from him so we met all of them too.

Our PACU nurse Kelly was so so so great. She had a student – Ana following her who was equally as awesome. Ana spent plenty of extra time with Gannon and followed him all the way from arrival through surgery and our admission.

We also met Gannon’s anesthesia team who explained all pain relief measures they would be taking to keep Gannon comfortable. They ended up giving Gannon a block – similar to an epidural – called a caudle block to last several hours after his surgery. They also gave him some “sleepy juice” to make sure Gannon doesn’t remember the pre op and post op care.

Gannon tolerates all of this so so well. He lets them take his blood pressure and put the pulse ox on his foot, he’s just so chill. Usually babies fight everything so much. Not my Ganjo. He’s as patient as the day is long.

Before long Gannon was off. We were told it was a 2.5 hour procedure which I had no idea it would take that long. I was expecting it to take maybe 1/2 hour. Everything up until this point made me believe it was pretty quick and simple.

Gannon and his anesthesiologists.

We got updates every half hour. We were told to keep my phone on loud and not to leave the hospital and there was a patient liaison that called to give updates. Then an unexpected call came.

It was Dr. Storm. Everything was okay but they found two inguinal hernias (holes in the abdominal wall) in Gannon’s groin and wanted my permission to repair them. Of course I said yes.

Our DELICIOUS breakfast!

We continued to wait. We got an AWESOME breakfast in the cafeteria. About 2 hours later Dr. Storm came to talk to us. I’m trying to figure out how to explain this next part but it’s complicated.

Essentially there are two blood supplies to the testicle: One from up above and one from down below. Gannon’s blood vessels from up top didn’t allow them to stretch the testicle down to where it needed to be so they cut off the blood supply from above completely and will rely on the other form of blood flow to perfuse the testicle. This only happens in about 15% of cases of cryptorchidism or undescended testicles.

Then the inguinal hernias were discovered which created two more incisions than initially planned. Then they also noticed a hydrocele of the left testicle which is extra fluid and needed to drain that as well.

So instead of 3 incisions, Gannon has 7. This is all okay and fine but again, just more than we expected. We thanked Dr. Storm. Obviously he did a phenomenal job and was so great about explaining EVERYTHING to us in detail.

After he left, he told us that Gannon was in recovery and we could go see him soon and someone would come to get us. We waited..and waited..and waited…45 minutes had passed. Where was Gannon?

OOFDA! This is getting to be a LONG blog post. I’m going to have to break it into chunks. Check back again at 5:30 PM tonight for Part II of this blog post. I’m off to bed in my VERY OWN BED after I showered in my VERY OWN SHOWER! I’m learning to appreciate normalcy!

See you again tonight! Sorry for the cliff hanger – I’m zonked out tired!

Gannon’s Birth Story

February 19th, 2019. My dad was recovering in the hospital from a failed attempt to remove a tumor from his right lung. Craig and I came up to see him in the hospital. The next morning we had an ultrasound to check on Baby #2 who was much much larger than expected. I was measuring 44 weeks pregnant and was told to expect a 10+ pound baby. They told me I needed a c-section as I had a shoulder dystocia with Carver at 8lbs 6oz. There was “no way” I could attempt a vaginal delivery with Gannon.

The C-section was schedule for my 39 week mark. March 4th. I was devastated. I had planned my entire life around having the baby the week of February 25th. I had work off, it worked out with my Dad’s surgery schedule, I was so uncomfortable, I begged them to take me early. Keep in mind, I was measuring 44 WEEKS PREGNANT at 38 weeks pregnant while balancing 2 jobs and a 2 year old at home. They wouldn’t budge.

That weekend we had a horrible blizzard. Roads were shut down for days. We spent the entire day Sunday nestled in on the couch listening to the -20 below winds howl. Roads were not passable. Tow ban in effect. Northeast Iowa was SHUT. DOWN.

I couldn’t sleep for anything Sunday night. This giant baby kept kicking my bladder and as the night went on I knew something was up. I started bleeding.

I was covering childcare for mom so she could stay in the hospital with Dad. I was already awake when my alarm went off. I went to the bathroom one more time and as I stood to pull my pants up, my water broke.

YES! I was going to have a baby. BUT THE ROADS WERE STILL SHUT DOWN!

I called my mom frantically. Who was going to watch childcare kids? We can’t even get out of our driveway! What do we do with Carver? How’s Dad? Is he coming home today? Oh my God this is such a mess. I’m leaking all over. Where’s Craig? No mom I’m NOT calling 911…

Oh boy…That was a contraction…

“CRAIG! MY WATER BROKE!”

Well we did get out of our driveway. We found someone to cover childcare. I did call 911 to ask someone to plow out our road. Contractions did pick up. No maxi pad made on this earth could contain my amniotic fluid. Craig rolled his eyes when I made him go get me a wheelchair once we got the hospital – not because I couldn’t walk but every time I took a step I leaked even more and I had new boots I didn’t want to ruin.

On our way to the hospital

They actually had to test me to make sure it was amniotic fluid. I remember laughing and laughing because DUH! OBVIOUSLY! No one in this world has enough pee in their bladder to get those two confused. Those contractions were getting harder and harder as we waited. I remember telling my nurse, “Yeah these are kind of starting to suck a lot.” She reassured me we were soon on our way to the OR.

3 hours after my water broke, in an OR suite my 8 POUND 12 OUNCE boy was born. Gannon was no where near the 10+ pounds they told us he would be.

At 38 weeks gestation, Gannon Joseph Friedman was born via cesarean section at 10:34 am in Decorah, Iowa weighing 8 lbs and 12 ounces measuring 22 inches long.

They placed him in the crook of my neck. I will never forget those moments with him. The warmth of his body against mine. His little tiny hands on my cheek. Maybe it was the morphine in my spine but it was pure euphoria.

I kept asking him “What’s your name?” We had a few ideas before we came into the hospital but nothing concrete. I could not shake the feeling that his name needed to start with a G. I kept saying the G sound over and over.

G G G G G. Craig agreed. “Grant? Graham? Gavin? I really like Grant!” We had Jennings, Gentry, Brannon, and Graham all in mind before we came to the hospital but there was only one name that clicked:

“Gannon.” I had only heard that name once before. Makinzey McKee on Teen Mom 3 named her baby Gannon and I’ve always liked the name. Plus I love first names that sound like last names. Craig agreed. Now we needed a middle name. It was pretty easy – my mom’s nickname is Jo and I want a baby named after her somehow and I don’t know if we will ever get a girl so Joseph (my mom’s name is Jo) it is!

Our WONDERFUL OB nurse showing me Gannon

In recovery we sat with our OB nurse who we just loved. (You’re so great Steph!) She helped us go through names, helped me breastfeed, checked on me and Gannon, wrote his name out on the board so we could see how it looked or if we liked it. She took care of us the next few days too. She always made sure to include Craig in the process which we both appreciated.

Breastfeeding Gannon was such a wonderful experience and I hope if/when we have a third that I will be able to do so again. I breastfed all the way to 4 months! Breastfeeding Carver was MISERABLE and I would NEVER wish that experience on anyone. I only lasted 8 weeks.

Mom and Dad were our first visitors. They stopped in on the way home from Lacrosse after being discharged after dad’s surgery. Dad wasn’t feeling well AT ALL and the visit was cut short.

Craig and I soaked up baby snuggles the entire afternoon until we had a very special visitor come…

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1 Year of Gannon

Yesterday was a blog post all about Gannon and Georgia. Today it’s all about Gannon because IT IS HIS BIRTHDAY TOMORROW! That’s right, we will have a one year old!

As a part of his Keystone Early Access assessment we had to talk about all the things we love about Gannon which is so so easy.

Gannon is the easiest baby ever. He is so content. Gannon is so observant. Gannon is kind and CUTE. Gannon is our empath and knows exactly when a snuggle is needed. Speaking of snuggles, he is so loving and truly sweet. He is resilient and slow to anger. He is everything I could have hoped for in a son. The very best part about Gannon is he is SUCH a Mama’s BOY! 🙂

I now present to you, one year of Gannon Joseph Friedman.

2 minutes
4 days
1 week
3 weeks
6 weeks
2 months
2.5 months
3 months
3.5 months
4 months
4.5 months
5 months
5.5 months
6 months
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Gannon and Georgia

Gannon and Georgia have their birthday party today! We aren’t planning anything elaborate – we will take lots of pictures to share later in the week!

Gannon is my one year old son, his birthday is Tuesday. Georgia is my sister Kelli’s daughter (named after me, Kalissa Georgia Friedman) and she turns one year old on March fourth. They are exactly one week apart.

In such a dark year for our family, these two have been such a light for us. They made us laugh, they distracted us, they reminded us just how precious life can be.

Born one week apart, I present to you Gannon and Georgia aka G1 and G2, the cousin twins, Gorgeous Georgeous and Ganjo, Pie Girl and Ganny:

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My name is Kalissa and I’m a workaholic.

I work too much.

I. Work. Way. Too. Much.

I’m at the tail end of a 21 day stretch. That means I have not had a day off since February 2nd. I’ve worked every single day including overnights and early mornings, anywhere between 6 hours/day to 12 hours/day. As you’re reading this, I am getting off a 12 hour shift and I have 48 hours of time off.

I’ve learned a lot about myself and my stretch-ability in the past 21 days. I want to share this with you not only because it will make a good blog post but as a good reminder when I’m ready to jump feet first into two jobs again next fall why I might need to reconsider.

  1. I can DO anything. I can physically make my body arrive on time and make myself do the things I need to do. I can stay awake a full 12 hours after working an overnight. THAT DOESN’T MEAN I SHOULD. That doesn’t mean that I should. That doesn’t mean that I should. That also doesn’t mean I’m doing a good job or that I’m pleasant to be around or that I’m truly present. It means that when the going gets tough, so do I. That doesn’t mean I should.
  2. If you don’t prepare, you won’t be prepared. Remember my blog post about productive days? It is still one of my most popular posts – I’ll link it below. How can one possibly prepare for 21 straight days of work? The answer is: you can’t. So you’re not prepared. The laundry is never ending, fast food is so much easier than meal prep at 4 am before work, heck I didn’t even have enough time to leave Craig a to do list.
  3. Time home is time spent wishing you were sleeping. I have no energy to give my family when I get home. We sit on the couch and watch TV together and go to bed by 8 pm at the latest. That’s not living. That’s not fair to the boys.
  4. Marriages need maintenance. When I’m always gone and running and swinging between one job and another, Craig and I barely have enough time for hello and goodbye and handing off the boys. There is no room for a date night or real conversation beyond the “need to know” like “HI! has Gannon pooped? Was Carver good at daycare? Can you empty the pop cans? Supper is in the fridge. BYE!” That’s not fun for anyone.
  5. That’s not fair to the boys. Period. It just isn’t.
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Family night at the Kramer house!

I had the best night last week.

Craig hadn’t met our new nephew JASPER yet. Kayla brought him up north to my mom’s house to visit! My sister Kelli was there with my niece Georgia. Craig and I brought the boys, Karl was there too! It was so much fun!

Comparing forehead wrinkles

We all just hung out, had a few drinks, made some pizza and played with the kiddos! We all get along pretty good and even more so now after having kids. We were missing our brother Buck, his girlfriend Lora and their kids Scotty and Lucy.

Kelli let Carver “write” all of the birthdays in her planner. This is so cringey. NO ONE writes in my planner but me! Kelli is so brave and Carver had so much fun he stopped a few times mid-writing to give Kelli a hug and tell her he loved her.

Here is Auntie Kelli with the cousin twins Gannon and Georgia! They are having a joint birthday party next weekend when they turn one! Kelli is so good with kids. She’s so naturally maternal. We all made pizza/supper and she kept the kids occupied.

I got to do one of my favorite things: take pictures. I told you last week that I invested in my new Macbook Pro. Well, now my eyes are set on a DSLR camera so I can launch into photography. As for now, I have a lot of fun with my iPhone 11. I love catching candid photos. Check these out:

Then it was time to meet cousin Carver. He did SO WELL with him. Jasper on the other hand Jasper did not do so well with Carver until he got his passy. Carver did so well and was even rubbing his head. He just loves babies, he always has.

While we had good lighting we thought we would try and get a few cousin pictures. You can see how well that went:

We love family nights and this one was especially fun!I can’t wait to watch all these cousins grow up together! What a fun bunch!

Thanks for tuning in! See you all again tomorrow!


Also – let’s stay in touch! If I came out with a newsletter – would you subscribe? Let’s be more than friends… and by that I mean can I slide into your inbox once in awhile? No spam, I promise! Your email is safe with me.

Dad’s Real Plate

My Dad HATED paper plates. In hindsight, I don’t really know why. Mom would dish out paper plates to all of us kids, especially on pizza night. Dad would always say, “I want a REAL plate not a paper plate!”

One day I found a plastic plate that looked just like a paper plate. It was his father’s day present one year when I was still in high school. The plate was moved to my parent’s new house in town and just the other day, (remember how I said our favorite pizza place has $13 supreme pizzas this month? Yeah – we’ve been using that coupon to the full extent) we brought mom some pizza.

Craig told me to just use paper plates to save on dishes. I went in the cupboard and found this. Roger’s “real” plate. It made me smile.

The past two weeks have just been really heavy. I’ve really been missing Dad and so has Carver. Craig mentioned how he misses talking to him about woodworking and having someone to talk farming with. I think we are all in a bit of a slump. Carver has been talking about Papa Moo non-stop which is great but makes a hard day a little harder. There are little reminders are everywhere. Some days they make me laugh, some days they bring me to my knees.

Thanks for reading. See you all again tomorrow morning bright and early at 0530.

For more content on grieving and the loss of my father, check out more posts from my “Fatherless Daughter” category or see these posts:

This may be awkward..

I once had ringworm on my butt cheek.

Yup. That’s how this blog post is going to start.

I was about 8 or 9 years old and my mom took me to the doctor. I was so nervous to show someone my actual butt. Turns out, the treatment for ring worm is over the counter Lotrimin.

Every day, my mom would take me into our teeny tiny bathroom that all 7 of us shared in the farm house and spray Lotrimin cream on my butt cheek.

This was all very private. None of my siblings knew about my “issue” until one day, we were all sitting around the kitchen table and my mom said “Come on Kalissa, let’s go spray your butt!”

I. Was. Mortified.

I started just bawling and was so embarrassed that everyone now knew about my personal problem. I didn’t think I’d ever live it down.

Well I did.

Why am I telling you this story? Well first of all, I’m an over sharer. Second of all, my sweet sweet Gannon.

He just loves cottage cheese!

Gannon cries when he poops.

Gannon has to have a rectal catheter to relieve gas from his bowels.

Gannon may end up with a colostomy bag some day.

Gannon’s anus may be deformed.

Gannon’s testicles never descended.

Honestly, there are things we have to do with Gannon to help him poop that make me blush that I haven’t shared.

If Gannon has what we think he has, we are forever going to be talking about Gannon’s bowels. Does he want that? Will he be embarrassed? Would you want your mom discussing your poop with the world? Will he be mad that I’ve been so open about his medical issues? Will his classmate’s mom read my blog and tell her kid about Gannon’s issues and tease him about it?

On the other hand, the less we talk about it and the more we keep it a secret, shame festers. I don’t ever want Gannon to be embarrassed or ashamed about his body. I don’t ever want him to feel like his medical problems are a secret. I want him to feel as comfortable talking about his bowel issues with me as comfortable as he is telling me he hurt his elbow. If we are going to be talking about his bowels every day for the rest of his life, we had better start with a pretty open honest conversation.

Not only that, but the more I talk about Gannon’s issues, the more awareness is brought to his condition. Maybe someone else is struggling with similar issues. Maybe some else is bouncing around between specialists desperate for answers. How can I advocate for my son if I’m embarrassed to discuss his medical issues?

I don’t know what the answer is. I imagine this is something we will decide as a family as Gannon gets older and can speak for himself. For now, I’m choosing to share. That may change. It may be limited. It’s a tough spot to be in but the support I receive by being open and honest with our struggles has proven to be worth the risk of over sharing.

Oh my sweet sweet Gannon. If you’re reading this someday, please know my intentions are pure. I would never intentionally do anything to embarrass you. Every decision we make is our best possible option at the time with the information we have. There is no manual on how to raise a sick child. I just hope I’m being the best advocate I can for you.