This is what the first day of 4th Grade looks like during COVID-19 Panedmic
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
Chilly Water – good thing I keep extra clothes in the car
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.
After IVIG – The flowers were not there in the morning
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.
A few days ago, I was asked “Does the tooth fairy really exists?” I was surprised, because I didn’t think that she really believed in the tooth fairy. I didn’t want to lie or to dash another bit of her childhood, so I told her that people imagine that the tooth fairy exists. Zayne told me that she thinks that I leave her the money, and that the tooth fairy writes her the notes and certificates.
Next week is IVIG #4 out of 6. We’ll have a full day at the hospital. Last week, we had a scare, and I thought Zayne might get admitted. The echo tech raised concerns at her echo which resulted in an extra round of blood work and spending a few more hours in the hospital.
Lasix was added back into the med regime to see if it could lead to any improvements. Zayne’s heart has not really improved since we were discharged from the hosptial. One of her immune meds is measuring too low in her body, so we had to add another pill to increase the dosage by .25 mg.
Enjoying cream cheese for the first time, ever
Biking in the rain
Backyard bird nest
Fly fishing at elevation. Difficult for Z to catch her breath when moving.
Checking out micro organisms
Tiger after swimming
Is it raining? Let me out!
Comments Off on Does the Tooth Fairy Really Exist?
The 3rd IVIG is done, and there are 3 more to go. I think Zayne learned the importance of drinking a lot of water prior to an IV poke. She refused to guzzle water the night before and the morning of the procedure; the IV insertion did not go well. On the positive front, there wasn’t a COVID test. Even though we were told that there wouldn’t be a COVID test, Zayne was stressing about it.
IVIG – what is it? Intravenous immune globulin is a product made up of antibodies that can be given through a vein. Antibodies are proteins that your body makes to help fight infections. Each antibody made by your body is slightly different, because it fits like a lock and key to every foreign substance (such as a virus or a donor heart) that gets into your body. Since Zayne created antibodies to destroy her donor heart, all of her antibodies had to be wiped out (unfortunately, there isn’t a way to only target the wayward antibody). It is bad timing to have antibodies wiped out when there is a pandemic.
How much longer?
IVIG is prepared from the blood donated by thousands of people, to make a super-concentrated and very diverse collection of antibodies.
Only three more 6-hr monthly sessions needed. After IVIG is completed, then back to getting vaccinations (the first round landed Zayne in the ER and the dreaded COVID test). Zayne was only the 2nd kid at Children’s Hospital Colorado to undergo Eculizumab treatment for heart rejection. This is a chemotherapy drug that stops antibody production (need to stop all antibody production since the donor specific antibody cannot be targeted), and has a side effect of allowing meningococcal infections. After Zayne, there have been other kids to have this treatment, but Zayne was the only one that had a severe reaction to the first set of meningococcal vaccinations. She is not looking forward to the next set of vaccinations.
Loves being outside in the rain
How is she doing? Numbers are holding steady and not getting worse. Heart Echo and EKG show no change. Donor specific antibodies are dormant, resting heart rate is still in the 130s (occasionally high 120s), and BNP is below 1,000 ng/l for the first time since rejection. BNP is a protein that measures heart failure. Before rejection, her level was below 100. Zayne still gets out of breath, and has to ask me to slow down.
Other exciting news is getting a new, smaller pill box with removable sections. Zayne is doing great swallowing all pills with water. She is down to regular rejection meds, except for one. When she gets out of heart failure, then she can stop taking that extra medication.
Waiting for Metamorphosis
Letting butterfly go free to promptly get eaten by a bird
Rain!
More Rain
Cooling off
A girl of many interests: LOL doll riding Dimorphodon while playing with train set
Tree climber
Not touching the playground
Eating kale chips to increase magnesium levels – it worked
June 29, 2020 marks the 5th anniversary of Zayne’s heart transplant surgery. This year, the celebration seems dampened by the rejection episode. For the first time, I didn’t bake a cake because she told me that she didn’t want one (we just had a “pill” celebration cake, and I would end up eating most of it). She wanted to celebrate by going back to the Wild Animal Sanctuary after today’s transplant clinic appointment.
Results from today’s heart transplant clinic appointment: no change, everything is the same. However, another medication bites the dust – Lasix was stopped on Friday, and isn’t needed anymore since Zayne is the same as last week. Down to 4 meds.
Another week of the same or slightly better results. We’ll take it. Her echo show very slight improvement, BNP managed to go down from the unexpected high a couple of weeks ago (still a little higher than the lowest number after rejection). No nasty donor specific antibodies – we want to keep those at zero.
Last week, we went to visit the Wild Animal Sanctuary It was our first public outing that didn’t involve the hospital (besides walks and bike rides). We went on a cold, rainy week day – perfect for us! It was empty, and the animals were active. Zayne loved it.
Tree Climber
I guess she wants a fish? She made this all on her own.
After alterations, the N95 mask fits
Mud play
A little grizzly in the background
Checking out animals with our binoculars
Hot chocolate on a cold, rainy day. We had the snack bar to ourselves.
Recovery is going slowly, but it is going. We’re hoping that last week’s high BNP (measures heart failure) is an anomaly, because all other indicators are the same or improving. We’ll get PRA (antibodies) and BNP next Monday (oh no, that means a vein poke).
Zayne attempted to eat the sidewalk (bike fall), and it looks like she only has some sore teeth. I told her “next time, turn your head”.
Medical News
Aspirin has been stopped
Magnesium is stopped for now – the team is researching different types of magnesium with less side effects.
Switched from Tacro liquid to capsule (levels have been stable, so the change was allowed)
Dropping down to 1 hospital appointment every week
Every other week vein poke
Next cath in 1 year
Exploring an old dam
Flat land bike ride
Checking out the underside of a bridge (and get out of the sun)
Painted Lady pet (due to cat disfiguring the butterfly)
My mommy helped me hack the exam room computer to watch cat videos. This is what happens when we have to wait.
Only made it a few bars, but maybe more next time.
Labs came back, and there isn’t bad news, so that is gg% Levels are the same or slightly better. Pathology showed a small amount of Antibody-Mediated Rejection, but the Donor specific antibodies are down. We are will take any bit of good news. The recovery is slow and could take 1 year. We don’t know why BNP went up, but trends are followed along with clinical assessment and other tests.
A close look
We will continue to go twice each week to the hospital, instead of dropping to once each week. However, we may be able to have venous blood draws every other week. I sure hope so, because continued pain is not good for Zayne.
Today was a mixed bag. Besides the terror of another COVID test (the 3rd in 6 weeks), the cath seemed to go well. Pressures in Zayne’s heart have gone down from April 27, 2020, but they are still high. For the first time, they were able to use intra-vascular ultrasound (IVUS) and fractional flow reserve (FFR) into her coronary artery. Flow rate was good, and there was NO gunk/plaque could be found along her arterial walls (the doc had only seen this in one other transplant patient).
Unfortunately, the BNP (indicates heart failure) has gone up instead of continuing a downward trend. There was talk of spending the night, but without having the pathology report or antibody result, they can’t treat or have a plan of action. Right now, it us unknown why the BNP has gone up.
Zayne’s cornorary arteries and sternum wires from heart transplant surgery
The future is unclear, and we may be back in the hospital. Most likely discomfort and pain for Zayne will continue with additional IVs and venous blood draws from non-complying veins.
It has been a long day – we left the house at 5 am and returned at 7 pm. The 6 hour IVIG extended hospital time into the evening. Hopefully, this infusion will add some helpful antibodies.
A little too much pre-anesthesia sedation. A few minutes later, she could no longer talk. Next time, she will skip this medication. Why isn’t this an option to help endure a COVID test?
“Why do I need another COVID test” and “I’m scared of the COVID test” is repeated multiple times every day. Zayne was supposed to have the test on Saturday, but she asked to have it the day of the catherization (we’ll need to be at the hospital at 6 am Monday so they have time to process the test). We’ll probably need to go even earlier, because there will be a lot of stalling and crying.
Two heating pads on both arms, a special light, and they still can’t draw blood without multiple pokes and lots of painful ‘needle searching for vein’. Apparently, Zayne doesn’t have good veins for blood draws. The successful poke was in her hand – which Zayne finds to be more painful.
The first time an echo tech shared the bed with Zayne – very strange
Zayne is not liking the hospital anymore, because hospital = pain.
Results from Thursday (June 4, 2020) clinic visit was good. Heat rate is still “down” in the 120s and no change on echo. Donor specific antibodies have not increased (we’ll find out more after the results from her biopsy on Monday). Platelets are a little too high, and Magnesium too low; aspirin has been added to the med list and Magnesium increased.
We’ll go for a bike ride this weekend to help her get her mind off of Monday. Today, Zayne seems to be eating a little more and she her stamina is slowly improving.
Eating breakfast for a change on our more comfortable chairs with new fabric. The older fabric had deteriorated, and sitting was not comfortable anymore.
