As you know, our lives and schedules change pretty quick. We were going to remove the line and then we weren't.....well.....
I received a phone call on Tuesday night around 7pm from Haven's Oncologist that we were to meet with the surgeon on Wednesday to get the approval for surgery to remove the line and have the surgeon check her over.
Kris and Haven went to the surgeon's office and signed all the paperwork to get that going. Dr. Price told Haven that this had to be the last surgery - he was tired of doing surgeries on her. He was joking with her but not really. I know he does not want her to have any more surgeries....I mean 6 in 1 1/2 years is A LOT!
Her surgery will be at the end of August sometime. Our surgeon is going on vacation for 2 weeks and then we will get the date of the surgery. I am happy to remove this line - it has been nothing but issues. I'll update on that when we have an exact date.
Learning sustainability for our family and taking care of kids. Becoming a chicken mom in 2020! Our oldest- Haven, 17, was diagnosed with Neuroblastoma Cancer and ROHHAD Syndrome at age 3. We continue to battle these today.
Subscribe to:
Post Comments (Atom)
ROHHAD in Ireland
I received this story in my email today. It still shocks me that my daughter has ROHHAD. It's a horrible disease that destroys a child&...
-
Hi everyone. It's been a long time since I sat and wrote about our daughter's extremely rare disease diagnosis. Literally 15 years a...
-
I received this story in my email today. It still shocks me that my daughter has ROHHAD. It's a horrible disease that destroys a child&...
No comments:
Post a Comment