Journal entry by Jessica Salow —
We headed down to Iowa City on 3/22 for Oliver’s surgery. The weather in Iowa was pretty bad…we left home at 6 am and didn’t get to Iowa City until 10:45! Normally it’s a little over a two hour drive. Oliver had to be “NPO” (nothing to eat or drink) starting at 5:45 am. Our dude loves to eat every three hours on the dot, so this was hard for him. Once we finally got to the hospital, they got all his pre-surgery stuff done. Then we watched some March Madness while trying to keep our hangry boy content. Around 1:30 pm they took Oliver back for surgery. They texted Mom and Dad updates throughout the surgery. It took about 4 hours for the whole thing. The fancy name for his surgery was an endorectal pull through and open ostomy takedown. Surgery took a tiny bit longer than expected, because there were some adhesions from the previous surgery that had to be removed. Other than that, it’s sounds like it went well!
Mom and Dad got to see Ollie in the PACU a tiny bit before 7 pm. We heard all the updates, and made our way upstairs to the pediatric unit, our home for the next week. Mom and Dad decided to stay with Oliver during this whole hospitalization. His room had a little pull out couch for us to sleep on. Don’t ask us how our backs are doing 😅
The first couple days of the hospital stay were focused on pain control and waiting for Oliver to poop! The team informed us that it can take as long as 4-5 days for the bowel to “wake up” after major surgery like his. The first days weren’t too bad, because they had Oliver on a morphine drip for pain. This medication also made him pretty sleepy, so he was unphased by everything. They had been working on lowering the morphine amount, and he was completely off it by Sunday night. Therefore, he started to notice how HUNGRY he was! They didn’t want Oliver to eat until they knew his bowels were working correctly. He was receiving IV fluids to keep him hydrated. Sunday night started the exhausting cycle of trying to keep our hungry boy content. He would somewhat settle down if we were bouncing/rocking him and holding the pacifier in his mouth for him.
Monday afternoon they decided to trial putting his NG tube to gravity vs the intermittent suction it had been at. He wasn’t getting much drainage out, and then around 7 pm he vomited green bile all over Mom. Poor little buddy. When we were getting him all cleaned up, we noticed the first little bit of poop though! Oliver had a pretty rough couple of hours with lots of vomiting and lots of poop. They obtained an X-ray of his tummy to make sure everything was okay, and it seemed fine. Next day during rounds the attending doctor explained that everything in his GI system must have started working at the same time, and it just knew it wanted to get out, so it went out any direction it could! Normally, they would have let him eat right after he started pooping, but they wanted to hold off and be extra cautious with all the vomiting that had happened.
The rest of Tuesday went by vomit free! We had the hangriest baby in the world though. It was getting pretty hard for Mom and Dad to listen to him scream for food and not be able to do anything about it. We fought to try and let him eat a little bit at night. He had barely napped all day, because the second we got him in a light sleep, the hunger would wake him up. We knew if he didn’t get a little food, he wouldn’t sleep at all. The main team was gone for the day, so it was just the resident on to make decisions, and she didn’t feel comfortable letting him eat without the “ok” from the higher ups. Tuesday night was hard. Oliver didn’t really sleep at all. It seemed the second we would somewhat get him in a slumber, he would either wake himself up from hunger, or staff would have to wake him up for other things (vitals, medications, looking at his tummy).
Finally late Wednesday morning after over 100 hours without eating, we got to feed our baby boy!! Oliver napped SO much on Wednesday. The second his tummy felt a little full, he just fell asleep in our arms.
We got discharged from the hospital late on Thursday. Oliver will be on antibiotics for the next three weeks until his follow-up appointment. Hirschsprung babies have a pretty high risk of getting enterocolitis, so this is preventative medication post-surgery. At his follow-up appointment, they will discuss/determine if we need to learn how to do dilations or irrigations with him. Right now we are working through the painful diaper rash that they say is basically inevitable with Hirschsprung babies. So far Oliver is not a fan of this pooping thing 😂
We are extremely happy to be back home to our bed and pets. Oliver is very happy to be back to his bathtub; the dude still loves his tub time! It was a pretty exhausting hospitalization, but we are still so appreciative for the team and everything they have done for Ollie. They saved our babies life, and we will always be grateful for that. 💜
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