Category Archives: Medical Procedures

November 11, 2022 · 4:16 pm

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.

Normal artery section (above) vs stenosis (below)

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

July 11, 2015 · 11:02 pm

First Week at Home

We have been home for nearly one week, and have gone for walks every day (even in the rain). Since Zayne was running inside the hospital, I expected her to go running down the sidewalk. She can walk much farther than before transplant, but not quite ready for a marathon. Thanks to her new energy, Zayne is not taking a nap during the day. This means that she sleeps very well at night. Zayne still needs to recover from the surgery, and let her muscles grow stronger. Then there is the issue of ‘how much exposure to the world’ is allowable. I had a doctor and a nurse tell me that I could take her out, but needed to be cautious. I was feeling like I was being overly protective by not letting her go back to summer camp. After the latest medical appointment, I received another story from a different doctor and nurse. The latest is that I should keep her at home with minimal exposure to other people. Apparently, Zayne may not be starting the fall preschool year with her classmates. Even playing with dirt is dangerous due to her severely weakened immune system. We are practicing a lot of hand washing and using much hand sanitizer.

For the next 3 months, we have to be at the hospital at 7 am every Monday and Thursday for a blood draw, echo, ECG, and exam. As you can imagine, the blood draw is a huge, painful issue for Zayne. The last appointment, had another painful surprise – stitch removal. The surgical tech told Zayne that it wouldn’t hurt, but Zayne was screaming and bleeding as the tech painfully tugged and cut the stitches. Zayne is learning to not believe medical professionals. As before the transplant, the echocardiogram (ultrasound) was enjoyable because it doesn’t hurt and she can watch TV.

The meds are a struggle. So far, we have done pretty well using Hershey’s Syrup and playing rocket ship (to me, the syringe looks like a rocket). However, it is starting to get old for Zayne, and she has had enough. This morning, she told me “I don’t like you. You always tell me what to do, and I don’t want to do it.” On the weekends, she has to take 6 different medications in the morning (not including the mouth wash for thrush, or the aspirin). For med transport, I bought travel toothbrush holders (perfect fit for a full syringe).

Check out the comparison between Zayne’s pre and post ECGs. The pre-transplant ECG is on top, and the post-transplant ECG is on the bottom. I have to get this framed for her bedroom.

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Filed under Medical Procedures, Transplant

June 14, 2015 · 9:58 pm

Holter Monitor

Zayne is having cardiac check-ups every month. Since it has been over 1 year, it was time to wear the Holter Monitor (basically, a 24-hr EKG). She has experience wearing one at least once per year since she was wearing onesies. Just because she has done it before, doesn’t mean she likes it. At least she is getting better at wearing it and not crying. It seems that Zayne still has issues with the adhesives (just like Mommy and others in the family). Hopefully, the hospital can accommodate her skin sensitivity when she goes in for her transplant.

We are still in wait mode for the transplant, and don’t know where Zayne stands on the waiting list. We anxiously await the call ( (I really mean dread) .

Chasing a bunny

Holter bike riding

Not comfortable and starting to blister

Zayne wants to share a couple of pics of our second brood of baby robins. The mamma takes away the shells and the poop.

First time fishing.

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Filed under Fun, Medical Procedures

May 13, 2015 · 12:20 pm

Checkup

A checkup isn’t complete without an iPad.

And a visit with the rabbits.

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And a little talk about death (not pictured) between the hospital staff and me (the mom). I sometimes wish that the choice for listing Zayne for a transplant would be easy. If she was sicker, I wouldn’t have questions. It is difficult when Zayne is so happy and seems “healthy”. I have to remind myself that it isn’t normal when she usually can’t walk from the car into her school. It isn’t normal that the stairs in our home are an obstacle (she often asks why we have stairs in the house). It isn’t normal that she is gasping for breath after putting on her pants. Then there are times when she can put on her pants, walk into the school, or run a short distance and proclaim that she doesn’t need a transplant.

Lung disease is a concern and her pulmonary pressures are already high enough to make a transplant more complicated. Maybe, I have waited too long to list her. Maybe the name of this blog post should be “A Mother’s Rambling Self Doubts”

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April 15, 2015 · 11:25 am

Cardiology Checkup

Zayne is having her first cardiology checkup since being listed for a transplant. She is very exciting over getting the “goop” put on her for the echo. Actually, she just likes the chance to watch TV during the procedure.

Blood pressure measurement caught my eye, because it looked like it could have been my numbers. It is the highest that I have ever seen for Zayne, and makes me wonder if she is sicker than she looks. However, the doc was not concerned about her pressure. Zayne did well during the procedures and was fine sitting away from me. She is pretty confident with the checkups and is comfortable with the staff.

After the appointment, Zayne walked all the way from the exam room to the car. She has never walked that distance at the hospital, so I start to think that she is ‘getting better’, and wonder if I should put her through the ordeal of a transplant. Of course, being able to walk a little isn’t an indication that her illness has reversed, but it goes through my mind.

The reality of her transplant is right in front of me. At this point, Zayne is next in line at Children’s Hospital Colorado. This doesn’t mean that she is next on the list, because listing is by geographical region. I will probably receive the call in the next few months.

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