As the one year anniversary of Gannon’s first hospitalization is here this week, I kept seeing my posts and updates come up in my memories on Facebook. I thought I’d chronologically document the first week of crazy that was our hospitalization at St. Mary’s in Rochester:
Spending the night at St. Mary’s with Gannon. Still not sure what exactly is going on but having lots of tummy troubles. As of now it sounds like he will have diagnostic surgery in the morning. Shout out to my WMC fam for taking such good care of him the past two days!
We don’t have much to report yet today. It’s a Saturday so things are moving slowly. He will be going for an upper GI and lower GI study to make sure everything is anatomically correct. We were originally sent up to St. Mary’s for intussusception causing an illeus which is when the bowel grows into itself creating a narrowing or obstruction. Now that seems to be the lowest concern in the list. We’ve heard so many guesses from so many doctors. Guesses range from could be a milk protein allergy all the way to birth defects of the colon. Gannon is comfortable for the most part as long as he is swaddled up tight. He gets intermittent pains that result in screaming episodes which are hard to watch. He hasn’t had anything to eat since noon yesterday and hasn’t had any bowel movements since Thursday.
I’m overwhelmed with the messages and well wishes. Thank you all so much. People have been asking about Gannon’s symptoms – it began on Wednesday when he just couldn’t get comfortable and his belly was very swollen and oddly shaped. Then he wasn’t having many wet and dirty diapers, his appetite decreased, his belly got even more swollen, and then he began having these screaming episodes. Anyway, I’ll keep you posted. Craig and I are pretty bored. Gannon is most comfortable if we don’t hold him so we don’t even have a baby to snuggle. Thanks again for your thoughts and prayers, messages, and well wishes.
Saturday night update: I’ve been debating whether to post pictures or not – these can be hard to look at. His poor belly is just so swollen. Tonight they put in an NG tube down to decompress his belly which is so so needed. I got to breast feed him tonight which was so so nice. We were both relieved. It really is an amazing bonding experience. He then threw everything back up. Today all we got done was a CT scan which is too bad. Lower GI study is pushed to tomorrow. We were told we will be here until AT LEAST Monday.
We got a little break tonight – ran to target to get some personal items which was nice. They have a washer and dryer on the unit which is great – we threw in a load of laundry to have clean clothes. They are working towards a diagnosis and have narrowed it down to a few possibilities. Tomorrow we should know more. They mentioned that the GI study is scheduled for 8 am. Craig and I know better. That’s all for tonight. I’ll post again in the morning
I said I would post an update this morning but I didn’t – and I had a good reason too. This is A LONG post. Today is just a waiting day. We were going to do the lower GI study which is a picture with contrast injected into his bowel to find where the blocking/stenosis is but they determined the test is unnecessary and would not change the course of their care regardless of the results. Therefore we still have the biopsy tomorrow. This will be very similar to a “baby colonoscopy.” They will take samples of his colon to look at under a microscope. This is where it gets tricky. I’m going to try my best to explain it. They suspect (as of now, this can change and does every day) something called Hirschsprung’s disease. This is a birth defect of the intestine. We’ve heard of this disease consistently thrown around since admission but now we are narrowing it down and they are comfortable telling us that this is their best guess at a diagnosis. What happened when the intestine was forming was there was a part of the intestine (in Gannon this happened to be the very last part of his large intestine near his rectum) there are no nerves or ganglion. SO therefore that part of the intestine doesn’t move stool through to the exit. It’s essentially “dead” (not necrosis though). Then everything backs up – way up – which causes a big old swollen belly. The biopsy is looking for NO nerves. Therefore it is going to take longer to read the pathology – essentially because we are looking for nothing. We are looking for the absence of nerves. This can take several days. So we have NO IDEA when we will get discharged. IF the diagnosis is confirmed, Gannon would need a surgery to remove the part of the bowel that isn’t working and reconnect it. This is CURABLE and TREATABLE with surgery which is THE BEST PART. He should go on to live a normal life.
So like I said it is a waiting day. We had the best company today. Sometimes you just need your mom. Today we each got our mom’s. Debbie Friedman and Roger Jo Kramer rode up together and spent the morning/afternoon with us. It was exactly what we needed. We went out for lunch and mom and I went shopping for some clothes. I’ll still post partum – some clothes fit – most don’t. It was so nice to get a few things. Gannon is doing well with the NG tube but most comfortable after a dose of Tylenol. One really incredible thing – our church – St. John’s is having a prayer service for Gannon and my dad tonight at 6 pm. When we read that we all started bawling – what an amazing thing to do. We wish we could be there to thank each and every one of those praying for us and sending us messages. The Kramer family has been hit hard this year so far. Everyone has been so unbelievably kind.
You guys, SO. SO. KIND. Overwhelmingly generous. So that’s what I know. Gannon is going to get a bath tonight. Craig and I got a shower this morning which is AWESOME. That’s all I have for now. If I know more, I’ll make a post. I know a lot of you are keeping a close eye on us.
Update from room 3127:
The biopsy went well this morning. Gannon tolerates it great. It was actually just done at the bedside and he didn’t require more than tylenol. He’s been sleeping great ever since. These results won’t be available until tomorrow afternoon at the EARLIEST. IF it is Hirschsprung’s, he *might* have surgery on Thursday. If not, we are back to the drawing board.
In the meantime we are still hooked up to IV fluids. He isn’t tolerating feedings well at all. Last night he pretty much screamed on and off from 8 pm when I fed him until 1 am. We’ve switched to pedialyte to keep him full feeling. I’m worried he is losing weight without the calories though. They have mentioned trying a different formula as well. It’s all still up in the air. We do know he can’t go home until he tolerates feedings. Meanwhile, life goes on. The reality is we have a son who hasn’t seen his parents since Thursday. We MISS Carver SO MUCH. He cried when he saw a picture of Gannon with all the lines and tape. He needs us and honestly I need him. We’ve made the decision that I will go home tonight to see him, work tomorrow, see Carver again tomorrow night and come back on Wednesday morning. We won’t find out anything until then anyway. We need to refresh our clothes and somehow find some kind of normal for a day or two.
It’s a lot of sitting and waiting and Craig will sit and wait with Gannon and I will take the role of working mom with Carver. We expect to be here for awhile. Gannon will need me here more later this week than he will on a waiting day. This decision has been very hard to come to with Craig but we have to divide and conquer as my mom would say. It’s so hard leaving half of my heart here in Minnesota. That’s all I know today and all I probably will know for tomorrow too. I read every comment and I’m so thankful for all of your prayers and love.
You may have read in my earlier post that Carver started crying when he saw a picture of Gannon with all the tubes and wires and tape. That just broke my heart when I heard that. I picked Carver up from Grandma Debbie. I flew his door open and the FIRST thing he said to me was “baby Gannon?” He just ADORES his brother. He asked the whole way home when he could see baby Gannon. Here I was all upset because I’m sure he misses his mom and dad but he just really misses his brother. I told Carver that Gannon was so silly he put tape on his nose! Carver laughed and laughed and said “Silly Gannon!” I told him he was even sillier for putting a sock on his hand! (to cover the IV). Carver brought it up lots of times and said “Silly Gannon!!” Tonight we video chatted with Craig and Gannon and my Aunt Wendy Johnson and cousin Carly Von Bank who were keeping Craig company at the hospital. Carver saw the tape and the sock and the tubes and wires and he just laughed and said “Silly Gannon!” And then he took his own socks off to put on his hand and went and got a sticker from my mom’s sticker drawer for his nose so he could be just like Gannon. There’s your funny for the night. I’m off to bed. Alarm is set for 3:50 am to be to the hospital to work at 5 am. I think it will be good for me. I’m worried people will try to guilt trip me. I really need to work. It’s really okay. Craig is really okay at the hospital with Gannon. If Craig went to work and I stayed with Gannon people wouldn’t think anything of it. I’m pushing gender stereotypes here folks and I’m just doing what needs to be done for my family. Tomorrow I’ll get Carver all to myself again before heading North to be with Gannon on Wednesday.
Well this isn’t where I expected to be. It is a long story but I’m here now.
I’m going to start with the good news: Gannon does not have Hirschsprung’s disease. Gannon is doing much better. This morning they came in and clamped his NG tube and stopped his IV fluids to see how he would do. He is tolerating both well. Another piece of good news is we should be going home in the morning. Now I’ll tell you the okay news: They *suspect* Gannon is allergic to milk protein. Gannon has been in a trial of Alementum while he is here and it’s has been going well. This is a very super expensive fancy hypoallergenic formula. This means I either have to completely cut dairy and soy from my diet – no exceptions – to breastfeed him or I have to be done breastfeeding. This absolutely and completely breaks my heart. I’m not quite ready to talk about how much that upsets me. Gannon does have some abnormal anatomy towards the end of his digestive tract which they *suspect* in combination with the *possible* milk protein allergy caused his problems. This can be treated with simple dilation. Do you notice how many *maybes* are involved in all of these *possible* diagnoses?
I’m frustrated. I’m sad. I wanted a definitive answer. I didn’t want thousands of dollars workup to be told to switch to formula. I don’t want to quit breastfeeding. I’m thankful Gannon is feeling better. I’m thankful we will be able to go home. I’m thankful it was nothing serious. Mixed emotions here tonight. We will continue the trial of allimentum through the night and make sure he tolerates feedings. We will likely head home in the morning. Supposedly he is fixed. Supposedly he will be fine but my mom gut still isn’t all the way convinced. Stay tuned.
This little man gets to head home this morning. We are waiting for the head honcho’s blessing before we head out. He did okay throughout the night – he seems much more hungry on the Alimentum formula. The good news is I’ve been reassured by several people that I can *maybe* try adding breast milk back in slowly to see how he tolerates it after we’ve done a week or two of the dilation. That gives me hope. I had no idea how much I enjoyed breastfeeding or how much I would miss it until it isn’t my choice anymore. I didn’t breastfeed Carver – he could not figure it out and we would both end up frustrated. Gannon has been a breastfeeding champ from the get go and it’s been an awesome bonding experience and it’s free. So we go from free milk to the most expensive milk. It’s all okay. I’m so so so so happy that he doesn’t need surgery. I’m so thankful he is feeling better. Prayers have been answered! Now back to admiring those ADORABLE forehead wrinkles.
Going home from the hospital on 2/29/19 vs. going home from the hospital on on 4/3/19 (he really grew into that outfit!)
The Gannon update:
We’ve been doing okay since we came home. The alimentum does not keep him full at all so it seems like he is eating all the time! Gannon’s belly is pretty distended again but doesn’t seem to bother him too much. We have a follow up with Gannon’s regular doctor tomorrow afternoon so we will see what he says. Gannon just doesn’t seem happy. He still seems uncomfortable, he still seems like he has gas that is bothering him, just not himself. A week ago we started all this mess and a week out we still don’t really have an answer – just a lot of educated guesses and trial and error. We are still open to suggestions if you have any. The blue marks are where we have been measuring his belly. We are still so overwhelmed by everyone’s well wishes, cards, texts, comments and kind gestures. It really takes a village and this past week we found out how big that village is. Especially thankful for Kelli Jo Hanken Debbie Friedman and Roger Jo Kramer.
Gannon does not seem thrilled about another weekend of testing in the hospital for sure…It’s been a whirlwind of a day. Here we are at the University of Iowa hospitals and clinics and we are getting admitted for the weekend for an NG tube to decompress (again) and diagnostic testing to figure out why he needs an NG tube anyway. First up is another ultrasound. Our new and improved pediatric GI doctor already has some concerns that Mayo has not addressed which is a relief. We felt very dismissed by Mayo. They continue recommending glycerin suppositories to relieve the distention. We is he distended in the first place? No belly should look like that. A 39 day old should be able to poop on his own without help.
I had our local pediatrician put in a referral to the U of I this morning and the process moved pretty quickly from there! Thank you to my Facebook friends who encouraged us to seek a second opinion. I’m glad we did and so is our GI doc. I just feel so crazy knowing something is wrong and everyone tells me he is fine! Craig will come up tomorrow – I’ll keep you guys posted. I know so many people are keeping track of us! I feel the love!
We are HOME. For good.
We got the closure we needed from UIHC. I’m so angry we didn’t start this crazy 10 days in Iowa City instead of Rochester. We will not make that mistake again. Gannon’s belly looks great. We had tons of bloodwork, another ultrasound, an X-ray, and IV fluids. Overnight things seemed to have finally tamed down and his abdomen is not as distended.
Our Pediatric GI doctor looked at all of the imaging and was able to trace a gas pattern that looks more like Gannon is swallowing a ridiculous amount of air which cannot be absorbed by the gut. This totally makes sense to us which explains why he has so much air in his belly to begin with. That’s a simple fix – we will be trialing new bottles to find one that works for us. We are using Phillips Avent bottles now on the size one nipple – any bottle suggestions are welcome. As far as Gannon’s “screaming episodes” we know that when he gets backed up and bloated his bowels telescope into each other called intussusception. We’ve caught this on ultrasound but then it corrects itself. To prevent this he needs less air in his belly. Intussusception can be very painful hence the on and off screaming. There’s nothing really to treat this. If it doesn’t seem to correct itself or is inconsolable he needs a barium enema to treat and diagnose it. The key is to prevent as much air swallowing as possible. Gannon CAN RESUME BREASTFEEDING. They HIGHLY doubt that he has a milk protein allergy and have dismissed Mayo’s diagnosis and told me to keep feeding him breastmilk which is so wonderful. Gannon has NEVER had blood in his stool or blood in his vomit which is key in diagnosing cows milk protein allergy. In the meantime I have two full cans of alimentum if you know someone who needs them.
I learned a lot this last week. Biggest piece of advice to anyone seeking care for their kids is ask for a referral to the university of Iowa. Don’t mess around with anywhere else. That’s all folks. Thanks for all the love and messages and letters and support. If I haven’t got back to you I’m sorry it’s just been nuts.
So that’s the beginning. Obviously a lot has happened in the past year but it was really interesting reading our journey back over again. I wish I would have fought harder at Mayo. I wish I would have pushed for more testing at the University of Iowa. Hindsight is 20/20. With our referral to Milwaukee postponed again we are that much farther away from answers and an actual diagnosis. For the most recent Gannon update, check out tomorrow’s blog post.