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.
Kids are so normal. Even when life is abnormal they are SO NORMAL. When Noah was two he was fascinated with his nose. Mainly in the way things could go up it. Mostly the things would come back out but one day, soon after we moved here, Noah shoved a cooked […]
I met with a special mom tonight at the hospital whose little one is waiting for a heart and I just wanted to say a couple things to her and any other family who finds this blog.
It will seem overwhelming and probably discouraging to read about our life, but remember it isn’t your life and […]
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 […]
Zoe didn’t make it to the transplant picnic this year. Although she ditched the feeding tube this week her chest congestion got really ugly and she began coughing again. Tomorrow she will have a chest x-ray and be seen in clinic with a few labs thrown in for some real fun. All this meaning there […]
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 […]
Zoe has now been without major symptoms for a week and a half and I began discussing with the team how long the virus will hang around on our “stuff”. There really is no point in trying to clean it out of our house since Lysol won’t kill it on our furniture. I […]
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 […]
in the ER since she seemed so much worse in the morning. Around 5:30 in the morning she was nearly hysterical and I was running through a list of things: are you hungry, thirsty, tired, do you hurt, etc? In exasperation I finally asked if she wanted to go to the hospital. She stopped crying, […]
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.
we are waiting for some lab results. Wednesday evening (more likely afternoon) Zoe started a high fever. I wish now I had taken a video of her because I’ve never seen anything like this. Her fever was 103 and she was running around laughing and acting normal. The only reason I discovered her fever was […]