Laura's blog

Sweet Stories

Ezzy had to tell me a few jokes before we headed out for our weekly appointments. He was hilarious. The cardiologist are really happy with how his heart is shaping up. It's getting stronger and more flexible each day. Biopsy is in less than two weeks! We will see how much rejection he has once biopsy results are back.

Syringe Hero's

It takes a village to raise Mr Ezra. Syringe sterilization is always a family affair. Thankful for these cute helpers! #syringeheroes

Clean up Time

This Santa had too much to drink?

Between nasty tasting meds and a shallow gag reflex it does not take much to get ezra to puke 1-2 times a day. We thought it would get better when we leave his tube out. It sadly had not! Sigh...back to the drawing board.

Snow day

It snowed this week in Washington which means schools are closed! The kids were super excited to play in it but I had mixed feelings. We ended up having to miss Ezzys 4th scheduled swallow study test at the hospital. He is still not swallowing and taking bottles correctly so it takes a lot of trial and error everyday. We need the test to find out if he is aspirating into his sinuses before pushing more bottles or starting solid foods.

At least we now know this sweaty cardiac kid LOVES snow!

Teething

One of the side-effects of cyclosporine, a hazardous drug Ezra is taking to prevent rejection, is drug-induced gingival enlargement - an increase in the size and thickness of the gums.

It's usually not a critical medical problem, but it can make teething difficult. The transplant coordinators warned us to expect a prolonged teething process and also a more difficult one. We'll see what happens. He's been drooling and fussy lately, but so far no teeth.

Places of Comfort

There is a room in the very back of the cardiac ICU nicknamed the sad room because that's where the doctors bring people to give them bad news.

"I'm sorry the surgery did not go as planned."

"We did everything we could."

Focusing on Joy

Ezra is loving being the third wheel on our family outings. His siblings get the biggest smile out of him! There are many daily challenges we are still working through with his routine and our PTSD. We try to focus on the small moments of joy to carry us through his journey.

Sibling Love

One huge blessing to having a sibling with serious medical issues is increased compassion for everyone around you. Both kids use imaginative play to perform surgeries, homemade vaccines and intense rescues daily. We would not be surprised if one of them go into a career using these skills.

Miracles

This is Ezra moments after coming out of surgery early in the morning on August 24, with his new heart beating happily in his chest. SO many emotions this day. If you look hard enough you can see his new oversized donor heart beating hard on his chest.

We still can't believe that the very day before we were having a hard conversation with CICU doctors about how much life support we were willing to follow through with.

 

Flashback Friday-Transplant Doctor

Flashback Friday:






 
 
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