Thursday, October 9, 2014

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 

Wednesday, October 8, 2014

Happy 3rd Birthday!.. #56

We celebrated Isaac's 3rd birthday on Sunday October 5th. He picked the Ninja Turtle theme :) Just like the 2 years past, the weather was in the 70's. Not bad for October in the Pacific Northwest. :) A few pictures below..

Friday, October 3, 2014

Well.. #54

Well the past 6 weeks or so have been pretty confusing. What we thought was some type of viral or bacterial GI infection seems to be some type of episodes. The reason I say that is, I can pin point other times this has happened this year which never mounted to being a full blown virus. No fever, no vomiting, no watery diarrhea. It has been soft mushy stool, intense stomach pains, and just this past few weeks mucus and blood.

We decided after seeing our surgeon that is NOT Hirschsprung's related. But it is GI related. So she suggested we meet with our GI dr right away. Which we did, on Wednesday. We had a pretty lengthy appointment. We discussed everything that has been going on and he felt we needed to take a look further into things. Which means having a Flex Sig and an upper GI study so he can see his small intestine and also his sigmoid colon. He will be looking at where this inflammation is coming from. The mucus and blood usually mean some type of inflammatory issue. He said it could be a wide range of things.. From a food intolerance, an autoimmune disease, IBS, or maybe even no cause behind it. There is a wide, wide range of things he said. He will take biopsies during the procedure. He is looking for specific things that will help with a diagnosis.

At first we had no time frame for these procedures because he wanted him to be in an "episode" so he could see what was actively going on. It's like how are you going to see the inflammation when it's resolved 2 weeks later? So we really didn't have a time frame for the testing. It could be next week, next month, or next year. But then today the symptoms started again and we believe he is in an episode.

His testing got fast tracked to this Monday. The 6th. Sunday is his 3rd birthday party and Wednesday the 8th is his actual 3rd birthday. I never ever figured we would be celebrating his birthday and dealing with these issues at the same time. But we are ready for some answers. I just pray it is nothing more than some type of food intolerance or even IBS would be ok. I just can't take another punch in the stomach with another diagnosis.

I have been having a lot of anxiety today thinking about Monday. I just don't even have the words for it. I am utterly speechless. Numb. Sad. Confused. Angry. And frustrated. I just keep praying that things will be ok and we breeze through this.

Please keep my baby in your prayers. That's all we ask for right now. I will update more this week and post a few pics from his birthday. ♡