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.
We’re going home today. I’m pretty mixed about this because I don’t feel she should be sent home with a central line and IV medication. They feel they have adequately trained me to care for her but it gets complicated with a toddler. The antivirul drug she is on, gancyclovir, has to […]
Zoe took in just over half of what her intake should be yesterday. They decided to give her another 24 hours to see how she does. I’m not sure what the long-term plan is since I don’t think she’s going to make 100% of her intake for today either and she lost […]
We took her tube out today at 11:00 to see how she does. Of course she promptly went to sleep and is still completely sacked out (it’s now 1:15). We’ll see what she can do with the rest of her day. She has until 11pm tonight to prove she’s ready for this next […]
We didn’t get to take her tube out today and try to let her feed on her own. Apparently the resident I talked to last night didn’t put in the orders to have her labs done this morning and then when my nurse called the team they said they needed to talk to the […]
Today Zoe is going to have her nasal tube pulled out and we’re going to see how much she can take orally without it annoying her. She’ll get to set her own eating schedule and we’ll see how well she does. There will be a minimum goal for hydration purposes and they will […]
Last week Zoe started reaching up and grabbing her toys when she’s on her playmat…..very fun to see her developing well.
Sorry I didn’t finish updating yesterday…it took until 3:15 for them to place her lines. The surgeon came to talk to me with a sheepish grin and said, “well, I was forewarned”. They had a really hard time placing her central line but it is in and the meds have been started. […]
I brought Zoe in this morning for her surgery to place the central line. Poor girl was a little hungry by the time they came for her but she spent some of the time smiling at me and her little friend (her pink elephant). They took her back at 12:00 and told me […]
This will have to be brief………although my last post showed Zoe is doing really well, one of her labs came back today with some disheartening news. She was positive for a virus called CMV which they routinely check for in transplant patients. It’s not a big deal if you or I catch it […]
Thanks to American Woman Health and Fitness who donated a one-year membership to me!