This is the journey through our daughter’s Congenital Heart Defect and eventual heart transplant. When you “decide” to go down the transplant route as it is called there are certain things you find out after you sign on the dotted line.
Zoe had labs taken Saturday morning and because her antibiotic is giving her diahrrea they didn’t come out so hot. She’s still anemic, her Prograf medication level is back up to 16 (should be 7-9) so her kidneys are getting stressed again and the dehydration means her bicarb level is back down to 14. […]
We came home around 1:00 this afternoon. Yesterday went well even though we weren’t at home. Paul brought every last Christmas present to the hospital and my mom brought up breakfast so we were able to open gifts together and have some family time. His dad and sister + family came by during the day […]
Merry Christmas everyone. I’m writing this message to you from the hospital. Zoe just didn’t have a good week. Since we got home last Wednesday night she has refused to eat or drink much and her energy level steadily worsened. On Sunday morning we went and had labs drawn and then […]
At rounds yesterday we discussed her BNP hormone level and other reasons it could be high besides heart failure. It also is influenced by kidney stress (of which she had when admitted Sunday) and infection. Because they only tested the level once they can’t see if it was trending down, staying the same or getting […]
Written on Wednesday, but about Tuesday…
Yesterday was a bit up and down. She woke up in better spirits and hungry so I fed her a little applesauce which made a second appearance about 15 minutes later. She also threw up a little water about an hour later so they gave her an anti-nausea […]
Today was a rough day but ended well. Zoe’s fever continued and worsened during the day. She slept most of the day but when awake cried and moaned. Tylenol wasn’t controlling her fever well but around 7ish she woked up and her dad and brother were there to cheer her up. […]
Sunday afternoon Paul and I brought Zoe up to the ER because she woke up from her nap with a fever over 102, a rash and lots of moaning/lethargy. I kind of expected that her two week long cold had taken a bad turn into viral pneumonia but her chest x-rays looked clear. […]
I am beginning to rethink social isolation during the winter months. Like maybe it should be government mandated. I feel like we’ve been sick since October; we’ve definately been sick since Thanksgiving. Along with the pukes virus came a nasty respiratory cold (one-two punch) and we haven’t been able to shake it. All of us […]