Hello, This blog is something I've been meaning to start, just to keep my head straight with all the doctors appointments and hospitalizations we've had, and have in store for us down the road. Our sweet Bailey Anne McIntire was born on January 22, 2017 at 6:08 p.m. weighing 7 lbs 14 oz and 19… Continue reading First Blog Post
The past several weeks Bailey's labs have shown the liver enzymes trending up (AST/ALT and GGT). She has been off of Prograf since the beginning of November to help her own body's immune system fight off the Ebstein Barr Virus that it got from her donor liver. But the EBV is being stubborn and keeps… Continue reading 2nd Liver Biopsy
Saturday, October 13th, 2018 I was supposed to go to work today. I woke up at 4 with a splitting headache so I got up and peed, then checked my blood pressure and it was as high as 165/92. I called into work. Waited about an hour. Rechecked it and it was back to normal… Continue reading The Fam is falling apart!
January 22, 2017 - Bailey is born (3 days) January 22 - January 24 admission, IV antibiotics for chorio and beginning of workup for Biliary Atresia January 28, 2017 - February 16, 2017 - Admitted for Kasai Surgery and "cholangitis" (20 days) January 30, 2017 - Kasai Surgery January 4, 2018 - January 12, 2018… Continue reading Timeline of Hospitalizations
I've been keeping up with all our clinic and lab visits in a notebook on paper (the old fashioned way), but I've decided to transfer all of that here, so everything can be in one place! I'll keep everything up to date on this one post, with the most recent being at the top. These… Continue reading Lab & Clinic Days POST Transplant
Monday, June 11th - Tuesday, June 12th (because these days really ran together too much for them to get their own separate sections) It was 10:15 pm, Bailey and I had just spent the afternoon at Nana and Grandpa's house swimming and eating REALLY good brisket. We just parked our car in the parking garage… Continue reading Transplant Day!
Hello still! The April/May blog post got really slow to load- I think maybe too many pictures in the beginning before we knew we'd be here for almost 2 months! So with it being a new month, I figured I'd start a new post. Same updates everyday, just on a fresh page so you lovely… Continue reading June Hospital Updates
Friday, April 13th - 1st full day Conjugated bili is up to 1.5. She's still running fever, it was as high as 102.3 at 2 am and we gave Tylenol then. It stayed down until about 11 am- back up to 101. They ordered 1/2 dose of Tylenol this time. They started her on Zosyn… Continue reading April/May Hospital Updates
It's almost midnight. I should be sleeping, B is asleep in her hospital crib and Grant is asleep but all these thoughts and "what if's" just keep flooding my head. Bailey has been running a fever since Monday. Highest it's been was yesterday 102.4. My mom took her to the doctor Tuesday and Dr. Miller… Continue reading Admitted… Again
Friday January 5, 2018 I haven’t gotten even a second to write down my thoughts and the events of the last 24 hours. We ended up taking Bailey into the ER last night around 7 for extreme fussiness, diarrhea, low grade fever, and excessive sleepiness- on top of the already elevated 0.6 conjugated bili. We… Continue reading Diagnosis: Cholangitis
As we get closer and closer to Bailey being 1 year old AND 1 year post Kasai surgery, I’ve been in the mindset that “we’re in the clear”. We had a follow-up with Bailey’s liver doctor today, Dr. Sonny, and he thought she looked great on exam (as did I), and she FINALLY gained enough… Continue reading When you least expect it…