On our way home from Worland Capri went into a long episode of SVT. After 3 hours we finally decided to convert her with Ice and fixed her rhythm right away. Nothing like smothering your child in a bathroom stall at a rest stop in the middle of nowhere. Her diaper rash has continued to get worse. Her poor bum is so sore she has skin breakdown all over it. We tried antibiotics for a week and a medicated oral cream for a few days but nothing was helping so we decided to bring her into primary childrens once we got back to Salt lake. I feel so silly bringing her in for a diaper rash. i am trying not to be that mom who freaks out over every little thing but this rash has gotten so bad.
After the brought her into the ER and did a few tests they noticed she was struggling to breathe and had an extra heart beat in her waves. They decided to admit her and try to figure out why she was not able to have normal poops.
We have chalked it up to when we increased her calorie intake it was too much for her body to handle and so instead of absorbing the calories she is just pooping them out. After several discussions with pediatricians, cardiologists and the nutrionist we have decided that putting her back on a feeding tube is the best option for now. That way we can pump her with a new formula to get her to gain weight before OHS in two months. As much as i REALLY don't want to be back on a feeding tube i want my baby to grow so she can survive surgery. We will do whatever it takes!