Zayne is coming out of the OR. Her old heart was in bad shape and caused her to have high pulmonary pressure. The new heart is trying to pump at a normal rate, but that could damage the new heart. Zayne is on additional meds to help with the pressure. She has a catheter in her heart so pressures can be read in real time. Zayne will need to remain intubated for 24 – 36 hours to give her lungs a chance to get used to the pressure. I haven’t seen her yet, but she will be full of tubes. I’ll post a disturbing picture when I get to see her. I’m sure it will be difficult.
Update 2 hours
She is on heart-lung. Old heart out (looked very small and thick), and new heart is sitting in her chest. The surgeon will sew it in and let the blood flow to check for leaks. When the plumbing looks good, it will get started using electrical current. When she comes back to her ICU room, I will get kicked out for an hour while they get her situated.
Filed under Transplant
Update 1 Hour
Zayne’s chest is opened, and her current heart looks pretty bad. I was told that she definately needed a new heart. The donor heart is on the way by car. When the new heart is in the room, Zayne will be placed on a heart-lung bypass machine then her heart will be removed. She is doing well.
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Filed under Transplant
Hanging out and waiting
No info yet. Watching Frozen.
5 pm – drugged and waiting to go back.
Filed under Transplant
Just got the call – scheduled for 4 pm
Check in later. Hospital just called there is an available heart.
Filed under Transplant
Holter Monitor
Zayne is having cardiac check-ups every month. Since it has been over 1 year, it was time to wear the Holter Monitor (basically, a 24-hr EKG). She has experience wearing one at least once per year since she was wearing onesies. Just because she has done it before, doesn’t mean she likes it. At least she is getting better at wearing it and not crying. It seems that Zayne still has issues with the adhesives (just like Mommy and others in the family). Hopefully, the hospital can accommodate her skin sensitivity when she goes in for her transplant.
We are still in wait mode for the transplant, and don’t know where Zayne stands on the waiting list. We anxiously await the call ( (I really mean dread) .
Chasing a bunny
Holter bike riding
Not comfortable and starting to blister
Zayne wants to share a couple of pics of our second brood of baby robins. The mamma takes away the shells and the poop.
First time fishing.
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Filed under Fun, Medical Procedures
Checkup
A checkup isn’t complete without an iPad.
And a visit with the rabbits.
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And a little talk about death (not pictured) between the hospital staff and me (the mom). I sometimes wish that the choice for listing Zayne for a transplant would be easy. If she was sicker, I wouldn’t have questions. It is difficult when Zayne is so happy and seems “healthy”. I have to remind myself that it isn’t normal when she usually can’t walk from the car into her school. It isn’t normal that the stairs in our home are an obstacle (she often asks why we have stairs in the house). It isn’t normal that she is gasping for breath after putting on her pants. Then there are times when she can put on her pants, walk into the school, or run a short distance and proclaim that she doesn’t need a transplant.
Lung disease is a concern and her pulmonary pressures are already high enough to make a transplant more complicated. Maybe, I have waited too long to list her. Maybe the name of this blog post should be “A Mother’s Rambling Self Doubts”
Filed under Medical Procedures
Clear Creek Walk
Zayne was in a walking mood on this cool spring day. It is confusing because she wanted to walk and did OK, but gets out of breath going up any incline. I carried her through the rough spots and she would ask to come down to continue walking on the flats.
Cute goslings are running about and we only got hissed at a few times. The local feed store still has chicks to admire, but some are starting to get feathers.
Time is ticking and Zayne is accruing time.
Cardiology Checkup
Zayne is having her first cardiology checkup since being listed for a transplant. She is very exciting over getting the “goop” put on her for the echo. Actually, she just likes the chance to watch TV during the procedure.
Blood pressure measurement caught my eye, because it looked like it could have been my numbers. It is the highest that I have ever seen for Zayne, and makes me wonder if she is sicker than she looks. However, the doc was not concerned about her pressure. Zayne did well during the procedures and was fine sitting away from me. She is pretty confident with the checkups and is comfortable with the staff.
After the appointment, Zayne walked all the way from the exam room to the car. She has never walked that distance at the hospital, so I start to think that she is ‘getting better’, and wonder if I should put her through the ordeal of a transplant. Of course, being able to walk a little isn’t an indication that her illness has reversed, but it goes through my mind.
The reality of her transplant is right in front of me. At this point, Zayne is next in line at Children’s Hospital Colorado. This doesn’t mean that she is next on the list, because listing is by geographical region. I will probably receive the call in the next few months.
Filed under Medical Procedures