Yesterday, at 5pm, we switched Caleigh's feeds over to pedialyte. She received the clear liquid until 4am today when we turned her pump off. At 1:26am I got up with Caleigh to go potty. She's been letting me know when she needs to go in the middle of the night. Usually it's between 4-6, but since her feeds were off schedule her tummy was too. So we don't have dirty diapers in the morning. It's been about 2 weeks now. We are thrilled. At 2:23am we got up again because Caleigh was retching. We helped her get through it and then returned to bed. At 4am our alarm went off. At 4:30am we proceeded to try and give Caleigh a 250ml saline enema that her GI wanted. After 30 minutes of trying, we only got about 30ml in. Caleigh has what is known as a microcolon. Small colon. Basically because of the numerous surgeries, scar tissue, lack of blood flow, etc. her colon never grew like it should. It's teeny tiny. Which explains our enema predicament. It wasn't pretty for any of us.
We made it to the hospital a little after 6am. We actually made it through registration quickly and back in the prep area fast. Then we waited. As soon as we pulled out Caleigh's iPad and got settled in, she told us she needed to go potty. We went and sat on the potty and she went. She's been a rock star with trying out new restrooms lately. The anesthesiologist talked with us and at first he was just going to give her some laughing gas and then try for IV access. We nixed that, and asked for some versed since getting an IV on Caleigh isn't easy. Since Caleigh reacts negatively to sugars and dyes he decided to give the IV versed through her G-button. The whole time he was talking to us, Caleigh was telling me that she felt scared. A totally normal feeling. I would be scarred too. Poor girl.
It wasn't too long after the happy juice that Caleigh was smiling and giggling to herself. She was bright eyed and happy. I'm pretty sure the happy juice took away some of that scared she was feeling.
They took her back and by the time Eric and I got coffee, tea and a muffin they were done. It was about an hour. We sat down and talked to Caleigh's GI. He gave us photos of everywhere he went. The good news is that Caleigh's colitis isn't a problem right now. Her villi weren't bleeding when touched. Her esophagus looked good even with the amount of retching she does. She still has some of the surgically created narrowings that were there before. 3 actually. These narrow passes create a bit of a pool behind them causing bacteria to build-up. Nothing we can really do about it at this point. Caleigh's fundo looks good too. Biopsies were taken for bacteria and to check her enzymes. The GI thinks that bacteria is to blame for the recent issues. He thinks it is a good possibility that Caleigh picked up a virus which caused the bacteria irritation. Virus or stress is his guess. We should have the results by Friday.
Overall she did really well. The biggest problem was IV access during the beginning of the procedure. We have counted 6 attempt holes. The successful IV was placed in her foot. Eric and I went back and waited an hour, after the breathing tube was removed, for Caleigh to wake up. She was out and nothing we did was going to wake her. Her tummy was huge from all the air trapped in there. When she did wake up, she was uncomfortable, passed quite a bit of air and then had a medium bloody stool. After that she woke up well and we gave her some pedialyte. We checked out and made it home about 11:30.
She took a good 2 hour nap, followed by more potty time, and we are now hanging out on the couch watching Dora. She's tired and weak, but there are occasional smiles peeking through. Her tummy is still large, but much better than right after the procedure.
Yesterday, we got the cultures back from the urine we sent in. Caleigh has a UTI identified with E-coli. Common with lots of stool hanging out in the same area. So today she will start an antibiotic, which will undoubtedly mess up that tummy balance some more. We will follow the antibiotic with some heavy duty pro-biotics. Can't catch a break in the antibiotic department lately. She's been on something since the first of August. It stinks.
Thank you to everyone for your many thoughts and prayers. It's been a long time since we have needed them for a procedure. A year and eight months to be exact. I'm sure everyone misses all of the diaper, poop, stool and colon talk too! We are asking for continued prayers for the bleeding from the biopsy sites to stop quickly and for Caleigh's pain and trapped air to decrease. A fast fix for this UTI as well. We would love to learn something from the biopsies. Something helpful for Caleigh's journey, but sometimes no news is good news too.
We are proud of our brave girl. She did great. It looks like Eric and I will be buying another baby doll in the next few days.....