After taking the chest tube out yesterday her lungs slowly started getting worse.
After about 12 hours the team decided to put Kylie on lasix to see if that would help her lungs look better. We did a repeat X-ray around 12am and 4am. We finally were starting to see improvement!
She was looking so good that they decided to see how she would do off the vent! And she is living her best life! She is making everyone work extra hard. She is so wiggly and trying to get into everything.
She is making us all laugh.
Until….
she decided to pull her GJ tube out…
So now she will be going downstairs for a procedure soon
She is getting her third plasma treatment today to clean out the antibodies in her body.
Her heart rate has continued to be high. The ICU team came to me and asked what I think about it. I told them that since it doesn’t seem pain related (she is so happy) then I believe she is starting to get dehydrated and I would start slowly giving small amounts of pedalyte to see if her HR comes down. They agreed and within a hour her HR was down to almost normal range. I have to say how much respect I have for any doctor who comes to a parent and asks their opinion (especially with a medically complex child) and actually listens to them (if it’s reasonable).
