The surgery went smoothly, the mic-key button was placed and they also took 3 new biopsies from her liver. She has had 6 liver biopsies total now in her little life. The day before the surgery and the day of she did great. In the recovery room she was resting peacefully and all her stats were good so we went back into her room fairly quickly. Once there she woke up more and it was apparent she was in a lot of pain.
She received morphine through the night and she also continued TPN and steroids through the night and let the g-tube to gravity (which means letting it drain anything in the stomach by gravity). She slept well the whole night due to anesthesia and pain meds. A couple times she rolled on to her stomach and awoke due to the pain. The next morning (day 1 post placement) is when things changed. We started feeds with 2 oz of pedialite at a very slow rate (10 mL/hr) and she tolerated it great so we moved onto 2 oz pediasure at the same rate and every 4 hours decrease TPN to wean her off. Not long into the feed she threw it all up, so we took her off the feeds and back onto full TPN. We tried again and once again she threw it all up about halfway into the feed. This would continue to happen all day long. Her pain wasn't as bad and was coping with a mixture of oxycodine and tylenol. However 15 minutes before she would vomit she would cry in excruciating pain. She spent all day 1 post placement in bed, throwing up. That evening we gave her zofran (an anti-nausea medicine) before we tried yet again, another feed. She tolerated her feed almost all night, I thought we were turning the corner, but first thing she did when she woke up was throw up.
Day 2 post placement was full of more vomiting (this is the day we originally were supposed to be discharged) . Without fail she would throw up before the feeding was complete. Needless to say, I (and my family) did A LOT of loads of laundry. I even did some in the sink when I couldn't sneak away. Gotta do what ya gotta do right?
Day 4 post placement brought a new ray of sunshine! Areli held her night time feeds down! In the morning she was allowed off of TPN and she was visibly feeling much better.
The weeks following surgery were filled with ups and downs. As you can see from the pictures from the park she was able to walk again fully after a week being home and working on it with her. She lost weight from her troubles with her feeds and went down to 19 lbs. She also ended up with a staph infection in her stoma (the hole in her body that the g-tube goes into),but luckily I caught it very quickly and we avoided more hospital time and treated with antibiotics. It was a close call because if I would have given it another day or two to find out if she did have an infection we would have spent Christmas in the hospital, but since we were able to treat with antibiotics right away we avoided the infection getting out of control. Now we are battling granulation tissue (tissue that grows because the body recognizes there is a hole in it and it is attempting to grow tissue to cover the hole) it is nasty growth that is raw and bleeds and it is hard to battle.
This is the pretty, less intimidating way her button can look...
But we cannot always dress it like this because it doesn't secure her tube enough and the movement creates more granulation tissue. Usually this is the way her tube looks..
We also named her button "Benjamin", ya know, for Benjamin Button!
I want to also thank everyone who helped us out during the hospital stay and after. Amazing family and friends who dropped everything to be with us and do laundry, bring or send food, bring toys for Areli and smuggle in wine for Mommy :) Fellow Mito mommy's who have enough on their own plates took the time to bring us care packages. We really did feel the support and love from our friends and family and mito community. I couldn't have done it without ANY of you, so thank you!