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 saw the cardiology team today to just check up on her. We were also supposed to get her IV taken out but last night we noticed that the tape holding it in had lifted and the tubing had started to inch it’s way out. That is a major infection risk so we called the […]
Zoe’s diarrhea was a little better today and she nursed better so Dr. Law let us stay home again. If she isn’t getting a little better everyday then he wants us to come in to the heart clinic and have her checked. We’ll keep her IV until Wednesday “just in case”. The plan is to […]
Yesterday afternoon Zoe started getting dehydrated again so I pushed the pedialyte and called in around 4ish. The cardiologist who is on call this week is Dr. Law and he’s been treating her since last Saturday. He was really flexible and said it’s a 50/50 call whether she needs to be re-admitted; he said if […]
Apparently, Zoe. I took her in to her pediatrician yesterday because she was having lots of diarrhea and pretty much no wet diapers. He said she was dehydrated but gave me until 4pm to get enough Pedialyte down her to rehydrate. It didn’t work so at 6:00 Paul and I took her […]
Zoe wasn’t a whole lot better today but I don’t think she actually got her antibiotic last night. The thing gave her horrible stomach cramps and she ended up throwing up all her meds 10 minutes later. Ugh. Her pediatrician changed the antibiotic today to one that is easier on the stomach and GI tract […]
We’re home again. They sent us home with antibiotics and appointments for next week. She’ll see her pediatrician on Tuesday and the heart center on Wednesday. She’s also going to have a scope procedure done in the next couple weeks to check out her bladder anatomy a bit. Any child who […]
Monday night was not a great night in terms of her comfort. She spiked another fever in the evening and so late evening they decided she needed another blood culture done to look at whether an infection had spread to her blood stream. I repeatedly told them it was useless to try and […]
Zoe’s fever came and went yesterday but last night was much better for Zoe. She rested really well and her fever seemed to subside. This morning she slept a lot but actually ate a little food and played with toys for about 5 minutes. I was feeling like things were on the […]
We made it almost 9 whole months before having to be in the hospital but we are here again Friday night Zoe started running a temperature and it was much worse Saturday and by Saturday evening it was 102.6! We ended up in the ER last night where they drew blood to […]
Zoe’s biopsy results came in and she scored a zero which means NO REJECTION!! Very exciting! Next Wednesday the cardiologists will discuss her treatment plan and then we’ll probably switch her immunosuppressant as well as how suppressed she’ll be; she will probably have her level drastically lowered!
We did have to go in for labs today […]