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’ll be meeting a new deparment at Children’s we haven’t yet encountered; pulmonology. Zoe’s chest x-ray today looked good and the congestion isn’t actually in her lungs but the question now is why isn’t she clearing it out. Her docs are now wondering if she doesn’t have some kind of asthma as a result of […]
On Wednesday Zoe had a nasty run-in with a certain slide at the park. I can’t exactly explain how but when her face smashed into the edge it cut her on both sides of the feeding tube leaving her with two small but bleeding cuts. As a result she needed the tube moved […]
this morning and she does indeed have a nasty virus called Adenovirus. It affects mostly infants and toddlers although Paul and I have successfully caught it (it’s much milder in adults so no fever, only cold symptoms). It is not a fun virus and the worst news is that it functions like her CMV in […]
The blood cultures are going to take 48 hours so we’ll know tomorrow night. We may take her in tomorrow just to be checked because it seems her face is a little puffy. More to come.
Sorry to leave everyone hanging regarding her biopsy results but they didn’t call until late Friday afternoon and then it was the weekend…and….and….(excuses, excuses-thanks for reminding me I needed to update this Heidi). Her rejection score is a big whopping 0! That makes it nearly two full years without rejection! I don’t have all the […]
We’re home and Zoe is getting ready to go to bed. Overall she did really well today and has bounced back fantastically. She even ate a good dinner! The challenge will be to slow her down over the next couple days while her cath site heals. She’s supposed to be subdoed for two days and […]
We’re in recovery now and she did very well even after she came out of anesthesia without us (we don’t see her until an hour after she comes out of surgery). The nurses took good care of her and braided her hair, got her a fuzzy new blanket and a new stuffed animal (of course). […]
We brought Zoe here at 6:15 and the girl was not really thrilled with the situation. She was not cooperating and actually took a swing at the nurse so when the anesthesiologist saw her he suggested giving her some meds to take the edge off before she went in the operating room so she wouldn’t […]
The pediatrician cleared her for anesthesia today so we will be checking in at Children’s tomorrow morning at 6:15am. So early but good since she can’t have anything to eat after midnight and nothing to drink after 4am. We’ll keep everyone posted.
she takes matters into her own hands. I found her “playing” in the toilet this morning and in a moment of clarity asked her if she was thirsty. “UH, HUH” she said to me. Unbelievably gross but apparently effective as I had no choice but to give her some real water. The docs have reduced […]