Latest OR text: Zayne is safely in ICU! Everything went wonderfully. Thank you for letting us take care of her!
OR Update 5:40 am
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!
Filed under Transplant
OR Update 4:30 am
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!
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OR Update 3:30 am
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.
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OR Update 3:00 am
New heart is being placed in Zayne’s chest.
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OR Update 2:00 am
New heat is in the OR
This means the doc will remove her heart.
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OR 12:30 am update
Zayne is about to be placed on heart lung machine. Donor heart is coming in an hour.
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Here We Go Again
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.
Filed under Transplant
A Birthday and a Heart Cath
Zayne enjoyed Halloween and her 12th Birthday, but did not enjoy a heart catherization.
Zayne was a pirate for Halloween (yes, the horse is wearing the same hat that she wore for Halloween). She turned 12 on October 29th and had a birthday party at a trampoline park.
The heart cath was rough on Zayne, but she had a good outcome. There was a lot more pain after this cath than she had ever had before. This one was a little different because they had a team from the adult hospital as well as the Children’s Hospital team (and some observers to check out the new equipment), plus she had a high dose of blood thinner and was under for double the usual time. The hospital acquired equipment to enable high resolution measurements and images for Zayne. I was glad that she didn’t need to go to the adult hospital.
She had a high dose of blood thinner which caused bleeding in her throat from the breathing tube. Then someone ‘helped’ by siphoning out blood in her mouth which caused a large, bleeding bruise under her tongue. Zayne woke up with pain in her throat, pain under her tongue, a bruised lip, pain in arm and body achiness from a vaccine, pain in hand from 4 sticks to get a single IV going, pain from the cath site (where wires were inserted into vein and artery), and the discomfort of needing to lay flat for 4 hours. We did NOT need to spend the night in the hospital, but Zayne spent 2 days recovering at home. She is feeling much better, today.
The artery image shows a normal section vs the section that is narrowing. The perfect orange circle is the cath wire. The flow through the narrowed portion isn’t as bad as they thought, so Zayne does not need a stent at this time. Also, Zayne has had less heart pain the past few months, and that is probably due to the pressures in her heart going down to more normal levels. There is some minor cellular rejection; kids often go between 0 and 1R after rejection (which Zayne had in April 2020). So far, the plan is to repeat this type of heart cath in 6 months. The transplant team will meet next week to discuss her case, so plans may change.
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Filed under Medical Procedures, Uncategorized
Milky Way and Needing a New Heart
A couple of weeks ago, we went to family camp at Roundup River Ranch Family near Gypsum, CO. I don’t think we were every there without cloud cover. This time we could see the Milky Way, shooting stars, and watch satellites crossing the night sky. Zayne did the usual camp stuff – archery and boating. There was even a car show to enjoy.
During the drive, Zayne read from Colorado Roadside Geology book (for only 5 minutes, but it was a start).
Zayne’s heart isn’t doing so well. She has cardiac allograft vasculopathy (CAV) – this is where heart blood vessels become blocked. CAV a progressive type of coronary artery disease that is related to transplants – the only definitive long-term treatment for advanced CAV is re-transplantation. Right now, Zayne is on the heart transplant waiting list as a level 2 (this means it is not a rush). The car is packed, my cell phone is always on, and we are limited to being within a 2 hour drive of the hospital. Next month, she will have a special heart catherization where the blockage in her circumflex artery will be measured. If oxygen levels are reduced, a stent will be placed, and there will be a petition to move her up to the next waiting list level (more urgent need for a new heart). Unlike coronary artery disease (CAD), a stent will only be a temporary help for CAV – the plaque will grow over the stent.
So, play, ride horses, go to school (against Zayne’s wishes), and wait…..
We had fun at an amusement park
The old blog subscription add-on no longer works, so I’m trying a couple of things to enable email notifications for new blog posts.
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Filed under Fun