Category Archives: Rejection

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.

Just as we were getting IVIG down pat, we (I should say, Zayne) is done. I was told this is the last one, but I have learned that things can always change.

We got to try virtual reality (VR) for the first time. I tried for 3 minutes with Zayne screaming at me to give it back – I thought I was fine, but after I went back to my chair, I realized that I was motion sick (lasted for a couple of hours). Zayne loved it and was instantly addicted.

The new med, Entresto, is being slowly increased in hopes that we can make some progress. “A tad better” is the first positive news from her echo since we left the hosptial. Maybe Entresto (consists of two different medications) is working? We can no longer use BNP to measure heart failure, because Entresto increases BNP. The new measurement NT-proBNP is going down – that is good. I’m not explaining, because I would have to look up the technical reasons.

Still have to go to transplant clinic this week, since Entresto has been increased. Probably will have another clinic before the Nov 2 heart cath and Covid test #4. Children’s Hospital is not using the spit test ?

We had a little scare last week when riding bikes from parking lot to the pump track. There was a small incline and Zayne couldn’t catch her breath. I could hear her wheeze when she tried to breath. It was very scary for Zayne. It reminded me of the first symptom that I noticed the week before we were in the hospital for rejection – the same thing happened while biking up a steeper hill. She didn’t feel well for 4 days (even had to sleep with 2 pillows to breath better at night).

She still had fun at the track, but only 1 loop and rest at a time. Very different from the last time we visited when she rode her bike a couple of miles and then rode non-stop for an hour before riding back to the car.

Yesterday, IVIG #5 was completed. Once again, the IV went in nicely since Zayne worked to hydrate herself. Tylenol yesterday and today have helped with headaches. This time, the headaches weren’t as bad (the brand was changed since side effects were bad last time).

Because of last week’s biking incident, Zayne was given IV Lasix and has had her meds changed up. As usual, heart diagnostics aren’t showing any improvement (or un-improvement). Med changes include a Lasix increase and replacing Enalapril with Entresto. Entrosto was approved for pediatric use last October, and it has been shown to more effective in treating heart failure. She starts the new med on Sunday morning. Hopefully, Entrosto can help with heart failure and we can get her BNP to go down.

Another heart cath is scheduled in November instead of next June. Docs want to check out her heart to see if there is a reason for the lack of improvement.

The first couple of years we walked for the first day of school. The last couple of years, we rode bikes. This year, she sat in a chair, and I taped her schedule to the wall.

Exciting at first, but soon realized all day of school without other people can get boring. Especially for ADHD kids.

Last week’s clinc visit brought tears because Zayne learned she will be getting another COVID test in November. Since Zayne isn’t getting better, she is going to get another heart catherization (7 month earlier than anticipated). Maybe there will be another test by November that doesn’t require a cotton swab to the brain.

Since rejection med is a little low in her blood work, we have to head out to Children’s Hospital for blood work this week (only a finger poke so no big deal). Last week, we arrived for blood work at 6:45 am when the lab opens at 7 am. Blood draw did not happen until 7:45 – that is a whole lot of uncomfortable time in a waiting room with other people. Next week is IVIG #5

The day was spent watching TV and snacking. Water was guzzled the night before and in the morning – no tears this time around – IV went in smoothly on the first try. It was a good day (good for a 6-hr infusion).

I read some of an archaeology magazine to Zayne (we have a subscription), but after an hour it was time for TV and pizza for breakfast.

All the numbers were good (not better, but not worse). No donor antibodies. Heart failure indicator (BNP) still holding in the 800s. Heart rate still in the 130s. No change in echo or EKG.

No stomach issues this time around.

Last week there was some unexplained bad joint pain. Some extra tests showed nothing. Fingers crossed that joint pain doesn’t return.