Flex Sig - procedure day.. #55

Last Friday, the 3rd, we decided to go ahead with the Flex Sig and additional testing under sedation. With the continuing episodes of mucus in the stool and stomach pains, we thought it would be a good idea to just go ahead with it. So they got us on the schedule for Monday October 6th. Check in time 10am, procedure time 11am. I really felt like I had been punched in the gut. Usually I feel like I have time to prepare, we had an additional barium enema and exam under general anesthesia with our surgeon and we had at least 2 weeks to plan for those. This was scheduled for 3 days away. His 3rd birthday party was Sunday. I was already stressing about preparing for that. 

We arrived at the hospital in the day surgery area. Had to get all checked in. When they brought us back to the pre-op (not necessarily called that but I don't know what else to call it lol) room they went over all the standard info - medical history, allergies, etc. They also explained to us how they have critical care nurses and a critical care dr in the room during the procedure. I was expecting things to be less formal. This seemed like surgery all over again. It was kind of anxiety provoking but I felt reassured that they were doing all the steps necessary to keep my son safe. We got to meet the pediatric critical care dr. We really liked him a lot. We also got to see Isaac's GI dr who reassured us everything would be ok. I was a complete mess. It's really scary having your child go through anything. Surgery, exams under anesthesia, sedated procedures. It just really got me emotional and upset. Luckily, our GI dr is super amazing and reassured me, and I obviously trust him without a doubt. He is an amazing dr. I was really struggling emotionally with this. I wasn't scared to find out the results, I was scared to let him be sedated. Plus, they do that through an IV and my son has always been hard to get IV's in. Lots of hours, screaming crying, miserable times trying to get the IV's in. So I was really nervous about this IV deal. But they do a lot of prep work and have a lot of tricks for kids who are hard sticks. I was truly amazed at their technique. 

First, they put lidocaine on 4 different areas of his hands/arms. 4 places prepped so they could get an IV in. Then they put little hot packs on them. The IV went in right away and he didn't even notice. Didn't even make a peep. How amazing. A child life specialists was entertaining him on the iPad which really really helped. I can't even believe how fast and efficient this team was. It made everything so much easier on Isaac and us. 

The actual procedure only lasted about 15 minutes. Originally he was just supposed to have a flex sig which just looks at his sigmoid colon but since his dr was not seeing anything concerning he decided to do a whole colonoscopy. He said to the naked eye he did not see anything concerning or anything that could tell us why these episodes were happening. There was no inflammation there. He did take 10 biopsies though while he was in there. He said everything looked great. Which was excellent news. 

Isaac never missed a beat. He woke up, asked for the goldfish crackers he was promised and the juice. :) He was charming his nurse and he even got a present from the staff since his birthday was just a few days away. I cannot believe how brave my son is. He never acted scared. Not once. NOT ONCE. He is only 3. He amazes me every single day. 

We got word on Tuesday night that all his biopsies were NEGATIVE. His dr thinks that the texture of his stool (which he saw on the colonoscopy) - gritty and thick - is the culprit behind the mucus and occasional blood. We are working on getting his stool and colon more hydrated, keeping the moisture in, and see if that helps with these episodes. Which makes sense. So as of now, that is our plan for care. We will see his GI back in less than 2 months. WHAT A RELIEF! 

Here is my BRAVE guy :) 

This last picture shows where he took the biopsies and the area that is circled is where his surgeon removed the diseased bowel and reconnected down 

Made it to this next crucial step.. #5

Well not much of anything had happened since the biopsy. Wednesday was the 12th of October and basically we just sat by Isaac's bedside all day. We prayed a lot too. We were hoping for the biopsy to come back negative, but deep down inside we knew what was going to happen. I got up really early that Thursday morning the 13th to go over to the NICU. I usually got there around 6 or 7am. And I usually didn't leave until 2am.. I was there all the time. Sometimes I would go back to the Tree House and only be able to sleep one hour so I would sneak out in the middle of the night and go back to Isaac. And as soon as I got by his bedside, I got so tired. Sometimes I would doze off in the rocking chair. I really wished I was able to sleep there.. I would have gotten a lot more sleep that way. Something about being there and being able to watch over him made me feel calm and able to sleep. I just couldn't be away from him.

I think back on these times and thank God that he was too small to remember any of this and not able to be mobile. As I type this, he is almost 5 months old, being a wild man in our bed. He's sleeping next to me. If he were the age he is now or older, there would have been NO way it would have went down as smoothly as it did.

I took a shower, got myself dressed, and then woke up Jose and he got ready. We said one last prayer and headed over to see Isaac. The walk over there was all of 2 blocks but seemed like we couldn't get there fast enough. We  had no idea what time we would see or hear anything. I was prepared to wait all day. But when we got there, within minutes Dr. Golden the neonatologist came over to talk to us. He said that he had looked at the pathologist reports and it was Hirschsprung's Disease. My heart sank. He said Dr. Acierno would be by, I can't even remember what time he said because all I could think about was what he just had told us, to let us know the plan for his care. We both cried. We were devastated. But in a way relieved because from what we had been told and what we had researched, this was a minimally invasive surgery with next to no life time complications. That's IF he had short segment. If he had long segment we knew he worst case scenario he could possibly have a colostomy bag and have numerous surgeries. We didn't want to jump to any conclusions yet, we wanted to see what she said first.

When Dr. Acierno came by she discussed with us the plan for tomorrow, Friday October 14th. She explained to us that she was almost positive he had only a minimal area affected and she was confident she could do the pull through operation. She said she was going to do a small incision below his belly button and do another biopsy in surgery to find the area that had ganglion cells. She wanted to make sure the area she was attaching to had a lot of healthy cells. Then she would perform the surgery to take out the affected area of his intestine and make the healthy connection. She didn't have a time frame for surgery because it all depended on what she saw when she got him in there. Tomorrow would be a really big day because that was the day we got ALL the answers. We asked her a whole host of questions. Mainly we wanted to know when we could bring our sweet baby home. She said anywhere from 5 days at the least to 2 weeks, just depending on what she saw when she got in there, how the surgery goes, and how fast he bounces back. She said typically it's around 5 days. We were ecstatic to hear that. We had a glimmer of hope.. This was the best news we had heard in a long time. Now to mentally prepare ourselves for tomorrow.. Uh if we could ever be prepared for something like this. TOMORROW WAS THE DAY. One step closer to bringing our baby HOME.