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 home! They decided to discharge us yesterday. It was a crazy day trying to meet with all the doctors, nurses and specialists. Things are VERY crazy with her feeding schedule and she had to come home with a feeding tube. We’re trying to get her to gain two pounds before transplant. Although it’s wonderful […]
We’re still here…..working on feeding issues. The occupational therapist came today and whipped together a feeding plan so we could try to get off the feeding tube. We’re also learning how to use the feeding tube, put one in, check its placement, etc so that we can go home before her feeding is perfect. Right […]
We’re still working on feeding and weight gain. She’s doing a little bit better with the feeding and she did gain a little weight yesterday. Since I’ve been monitoring her tube feedings more carefully, she hasn’t thrown up at all. I discovered she was sometimes getting a little too much for her stomach and […]
We got moved out of the ICU onto the cardiac recovery floor on Tuesday. Things are REALLY different down here because the nurses have several patients and you are basically the main caregiver for your child. What that means is that one of us has to be with Zoe at all times.
The plus side […]
Zoe had a big day. She had the c-pac removed last night and is doing okay without it but her breathing seems to fluctuate throughout the day; she’s still on oxygen. She was moved into a crib and then they moved her to a new room (again); we are the nomads of the ICU. The […]
There are more photos of Zoe in the links section of this site, or you can cut and paste the following URL’s into your web browser:
http://www.flickr.com/photos/75669603@N00/sets/72157594193621647/
http://www.flickr.com/photos/75669603@N00/sets/72157594193638271/
Jenny
They’re still messing with her breathing. They’ve put something on her called a c-pac that delivers pressurized air through her nose (a similar setup to getting oxygen through the nose). It has done wonders for her! She is no longer congested and is finally RESTING well. She was so uncomfortable earlier and struggling with her […]
Zoe finally got her breathing tube out this morning. It takes them awhile before they breathe easily (they sound like they have croupe) so she has to be suctioned a lot and we’re encouraging her to cough a lot. She’s also got some swelling in her vocal cords partially due to having the tube and […]
As Jen said, Zoe’s surgery went really well. She got out at about 5:30 or so and Dr. Cohen (her surgeon) said she did very well. Her anesthesiologist said she reacted to the anesthesia exactly how they would want her to. We were pretty nervous to go back and see her afterwards because we had […]
Jen Zug writing…
Zoe came through surgery and looks great! They were able to monitor oxygen levels to her brain through a patch on her forehead and she received good levels throughout. She now has a little pacemaker inside her.
I don’t know anything more specific as I only spoke to her Auntie briefly, but wanted to […]