Zayne's Heart

Just wanted to let everyone know that Zayne is feeling better and isn’t short of breath anymore. She is using her pogo stick and running around outside.
Zayne is still in heart failure and seems to be on the slow road to recovery – it is looking like it could take 2 to 3 years. I’m still hoping for a full recovery…

School is still a struggle, especially when spending time taking self portraits during school hours.

New favorite snack is plain popcorn which isn’t going to help her gain weight.

CT Scan – no problems

Pulmonary function test – nothing (even recalibrated the machine to make sure it was reading correctly). Inhaler – didn’t help at all

Swallow test – not scheduled, yet. Just need to rule out any issues.

Possible diagnosis when everything else is ruled out: Vocal Cord Dysfunction (VCD)

Zayne thought the CT scan was fun, but didn’t like the Pulmonary Function Test since it made her very tired. Also, needed to rule out the inhaler so she had to go through the “burning” pain of using the inhaler and proving that it doesn’t help at all.

Walking around improved in the afternoon, so were were released. Her oxygen level is always high, so that isn’t a concern. Zayne is still tired and having more breathing issues – mostly making sounds when breathing in, so maybe it is VCD? We’ll be back in the hospital for more outpatient work.

I was really proud of her for walking out of the hospital and nearly making it to the car. She only used the wheelchair for a short distance.

We waited for hours to move from Pediatric Intensive Care Unit to new Cardiac Progressive Care Unit. When we finally got to the new room, we weren’t allowed to leave because they decided to use the negative COVID swab to test for a bunch of other viruses (all were negative).

Once freed from the room, we tried for a stroll, but Zayne had trouble walking and breathing, so she spent the day in bed. The ER X-ray shows some pulmonary hyperinflation.

The Plan for Friday:
– Lung CAT scan
– Maybe a swallow study (since both acute respiratory incidents occurred while eating)

We’ll see if anyone can figure out what is causing these incidents.

Stay tuned…..

Wow, I didn’t realize that it has been so long since I posted an update.  I had some posts in draft that didn’t get published. 

We are in the ER, again.  I’ve actually lost count of how many times we have been in the ER, and how many COVID tests that Zayne has endured.

Good news is that her heart pain has stopped (there were a couple of ER visits , but the last 2 visits have been for breathing difficulties). This has happened twice.  The first time was 3 weeks ago – all of a sudden, Zayne announces that she can’t breath.  Being a good Mom, I told her to go to sleep (I was hoping it would go away overnight). The next day, we ended up in the ER and spent the night in the 2 month old Cardiac Progressive Care Unit.  The new, modern unit is an improvement over the previous stay. 

This time, I could hear wheezing.  She was struggling to breathe but vitals seemed ok. Once again, the symptoms came on very suddenly. This time Docs could hear the wheezing and could see a lung issue on x-ray. A breathing treatment did nothing, but the 2nd treatment with another med was painful and set Zayne into a bad reaction. 

It has been a rough couple of hours.   I can’t stand it when she doesn’t see me and doesn’t talk.  Her body was shaking, legs kicking, staring blankly – this has been a pretty bad experience. When her vision and mind came back, there was excruciating stomach pain. It is nearly 1 am, and meds are here fir stomach pain.

This is from an older post that never got published:

Zayne and I have been having pogo contests in the living room, but we have finally moved the pogo sticks to outdoor use only.

Mostly, Zayne has been feeling fine, but still on the slow road to heart recovery.  We go for walks around the neighborhood and in Golden, and are still going to the hospital once each week (sometimes just for blood draws).  Supposedly, she should be only going once a month for clinic visits, but we seem so go more often.

Zayne had a stress test the day before Christmas Eve which results in severe heart pain that night and into the next day.  After consulting with her team, we ended up in the ER (and another COVID test), but they could not find any explanation for the sharp heart pain that continued until Sunday.  After a lot of exercise, Zayne experiences bad heart pain so I was expecting this to happen.  The stress test showed that her heart is still in failure, but they don’t see any concerning anomalies.  Also, Zayne does not have asthma (not a surprise to me).

This should be the last heart catherization of 2020. The numbers are slightly better by 1 or 2 points since the June cath. Better to be have a very small improvement than to have the numbers going in the wrong direction.

Antibody rejection is rated 0 (that is very good). Cellular rejection is at 1 R which is considered very mild and it is ignored.

The nasty antibodies floating around in her bloodstream are going down (and not attacking her heart).

Next heart cath is her annual in June 2021. The annual cath is more invasive, because they will go into her right (vein) and left (artery) sides of her heart. Also, her flat time will be 4 hours instead of 2 hours.

Zayne has had a rough week, because she received the painful Meningococcal Group B vaccination while she was under anesthesia. Even though she escaped the painful injection, she didn’t escape the side effects: very painful injection site (pain would wake her up during the night), feeling achy, sickly, and had a fever.

Back to transplant clinic in 2 weeks, and if things look stable, we will be down to once a month visits. Zayne’s heart is taking a long time to heal, and she is still in heart failure, but we hope it will continue to improve.