Zayne's Heart

It seems like it has been weeks since the transplant, but it was only yesterday. Sunday, April 28th 2024 was a really big day. The surgery started on Saturday, April 29, but most of the surgery took place on Sunday. In addition to having a transplant, there was a setback in the afternoon that involved blood loss and being placed on extracorporeal membrane oxygenation (ECMO) which is type of heart-lung bypass machine. ECMO does the work of the heart and lungs so the organs can rest. The machine takes blood from the heart, oxygenates, and then places back in the aorta.

It seems that after one day, Zayne’s new heart can push enough blood on its own, so she is scheduled for an OR appt at 7:30 am (in hospital speak, this probably means 9:30 am). After ECMO the vent should be gone within 2 or 3 days.

There isn’t much change to Zayne and if she was awake, she would tell me that I’m not allowed to post any more pictures of her. Instead, here is a picture of my private ER nurse – my sister Stacy, who is an instrumental part of this journey.

We (me and my sister Stacy) were able to come into Zayne’s cardiac ICU room. There were still a team of people working on her. The new heart still needs to recover from surgery and adapt to its new home. Zayne’s vascular system needs to recover from surgery and adjust to the new heart.

Zayne is still being sedated, is on a ventilator, is being given blood and lots of other medications. I count 10 pumps, but Stacy tells me not to count them. 

There are 3 drainage tubes and a pacemaker. She has two dedicated nurses that have not stopped working on her since we showed up an hour ago. Other specialists and docs come into the room. 

This will be a long road to recovery.

Latest OR text:  Zayne is safely in ICU! Everything went wonderfully. Thank you for letting us take care of her!

It has been a long night. Here is the latest text:

Okay! We were able to close up her incision. We are still working on that now. Everything has gone great. I expect we will be in ICU in about an hour! I will update again and let you know!

OR Text Message: Okay, cardiology is happy with function. Right now, we’re at the calming down ooziness stage. This could take a little bit of time. I will update again in about an hour to let you know where we are!

Text from OR:  The heart is in and now beating as her own! Next step is consulting cardiology and take a look and make sure everything is functioning as it should. After that, we will try to calm down any ooziness and then try to close her incision.

New heart is being placed in Zayne’s chest.

New heat is in the OR

This means the doc will remove her heart.

Zayne is about to be placed on heart lung machine. Donor heart is coming in an hour.

I had been planning on a posting an update, but Zayne was hesitant. However, she has had some health issues and agreed to pick photos to post. The photos in this post have all been picked by Zayne (she is a 7th grader).

Quick Health Update: Zayne had pneumonia at the end of February, but it took 1.5 weeks to diagnose. On Easter Sunday, Zayne had potential rejection symptoms so we went to the ER. It took a few days to determine that she doesn’t have rejection, but had walking pneumonia. Once they found the correct antibiotic, she started to get better and we were expecting to be discharged. But, Zayne’s kidneys decided to protest and she went into renal failure. After a few scary days (and hearing the word “dialysis”), we were discharged after 2 weeks. Five days later Zayne was re-admitted since her heart wasn’t squeezing well and she had a lot of excess fluid.

A heart cath on Wednesday showed major and minor arteries are blocked. This is a significant downturn in just 9 months, and showed that her heart if failing. She was changed to transplant status 1B and came home on Friday with a PICC line and continual drip of heart medication.

We spent one night at home and I received a phone call during my intake session with the home healthcare nurse. It turns out that I no longer need home healthcare because Zayne received an offer for a new heart. I was still doing laundry and did not have my ‘go bag’ packed since I had only been home for 15 hours.

At 11:24 pm on Saturday, April 27, 2024 – Zayne is in the operating room to receive a new heart. The surgery may take 8 to 10 hours. A second heart transplant is more complex.