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Today, is Zayne’s 3 year anniversary for receiving her gift of life – a new heart. At this time on July 28. 2015, Zayne was taken back for surgery that removed her diseased heart and replaced it with a healthy organ.

While we celebrate Zayne’s health and vitality, another family is grieving their horrible tragedy. While we watch Zayne growing and thriving, another family is wondering what their child would be like if tragic circumstances didn’t intervene. We celebrate while remembering and thanking the donor family for their unbelievable gift given during their grief and mourning.

Zayne’s health is great, and her heart is working perfectly as confirmed by a heart catheterization performed at the beginning of June. She is growing up, and for the first time, didn’t need to be sedated before the procedure.

As with every heart cath since Zayne was 14 months old, my parents traveled to Colorado.

Much to my dismay, we were adopted by a stray cat. Zayne loves Scottie, but is not allowed near the litterbox due to being immunosurpressed.

Zayne is enjoying horseback riding lessons.

No nap all day.  She stayed up late.

Running up and down the halls.

Walking long distances.

Interested in food.

The neck central line was removed – No more accessories!  I helped the nurse and spent 30 minutes trying to carefully remove all of the tape.  The nurse couldn’t pull out all the stitches, so she called the charge nurse.  The charge nurse wasn’t sure how to get the stitches out without causing Zayne considerable pain, so she called the resource nurse.  A scalpel was used, and there were tears, but it is gone.

Zayne is doing so well, that she has been discharged from CICU and is now in the regular cardiac care unit (CCU).  We had multiple parades with our 4th of July gear.  Zayne even left the CCU to go to another part of the hospital to watch fireworks. I grabbed the room stethoscope so Zayne could listen to her heart – she loved the thumping sound.

Cyclosporin levels needs to be stabilized, renal functions tested, and some other thing.  This means blood draws that will hurt since Zayne no longer has tubes coming out of her.  This is the start of a long journey of pokes.  Cyclosporin is a medicine used to prevent organ rejection; Zayne will need to take twice daily for the rest of her life (or until better technology comes along).

We both got a good nights sleep, since things are much quieter in the CICU annex.  Zayne is back to being Zayne!

The echocardiogram (an ultrasound) was performed in her bed, and showed a minor tricuspid regurgitation (TR).  The leaky tricuspid valve separates the right atrium from the right ventricle.  Some studies show that TR is fairly common after transplant.  The transplant cardiologist thinks it may be due to the backup the new heart had in the beginning and that the right side may have stretched a little to accommodate all the blood.  Hopefully, the heart will shrink back down and the small leak will seal.

We have been walking all over the Cardiac Care Unit (CCU), however, Zayne is technically still a CICU patient so we can’t go into the main hospital area.  We even went outside to a small patio and got in trouble with a security guard.  Zayne asked if he was going to shoot us since he was carrying a gun.  We hung out in the shade and there was even a lady bug for Zayne to pickup.  She stood for a few minutes in the sun, but the medicines make her skin very sensitive.  Since Zayne has missed the neighborhood July 4th Bike Parade and the festivities in Golden, we have been having patriotic walks with red/white/blue shades and a flag.

Now that she is no longer catatonic in bed, we are filling the time with electronics, books, walks, and manicures (the nurse was a good sport).  She is reaching up to get her own squirt of hand sanitizer (wash in / wash out), put on a t-shirt, and climbed up on to a couch.

A medical student was in the OR during the transplant (I gave permission), and she told me what Zayne said just before they put the gas mask on her face:  “You guys have me all drugged up”

Happy July 4th!  We will try to watch fireworks from a window

Zayne was much more comfortable with the pre-medication before her 4 hour drip.  I’ll make sure she has the pre-meds prior to the next 2 sessions.

Even when the nurse wanted her to use the diaper, Zayne insists on using the toilet.  She took a long walk to the other side of the CICU.  She kept asking me to pick her up, but the nurse insisted on Zayne walking herself.  Zayne wasn’t shaking, and I told her that she needs to pass an exercise test to get out of the hospital.

The central line in her groin will be pulled on Friday. I start training on Friday on how to deal with Zayne and her meds.

Here’s the incision.

We got the room all packed up for the move only to have a last minute change to keep Zayne in the CICU since they had an available bed.  Arterial line removed and I got to witness my first arterial spray

The 4 hrs drip has started, but this time she was premedicated to help reduce side effects. 

The change from IV to oral medications are causing issues, as I expected.  She doesn’t want to open her mouth and dislikes constantly having people telling her what to put in her mouth. Or the constant lies “honey, this won’t hurt at all”.  She is tuning everyone out and won’t talk except to hold out her arms and say ‘Mommy’ – my queue to be in bed with her.   I’m pretty sure she would give everyone the finger if she knew how.

1:45 pm – on the 4 hrs drip and sleeping peacefully.