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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:

Getting our footing

Sorry we are not actively posting as much on this page anymore. We are still getting our footing with our new crazy life with Ezzy. We have so many people helping us in SO many different ways. I hope I will eventually be able to genuinely show my gratitude to them. Without all of you I am not sure how we would be able to get through this! My sweet friend dropped off a whole bag of syringe-sized tupperware that she labeled herself! I know things will begin to get easier as we get more and more organized.

Borrowed Heart

Another mom from the Fb page borrowed heart wrote this post. It explained exactly what I wanted to say about Ezras new life long health concerns.....please read!

Appointments with Specialists

Our new life outside of the hospital includes many appointments with specialists. Luckily, Children’s makes it easy for us and filters doctors in one after another for a single appointment. Most single appointments include cardiologist, transplant pharmacist, transplant coordinator, nurses, transplant psychologist, nutritionist, and occupational therapist.

Every bit helps

Now that Ezra is home from the hospital and we are moving away from day-to-day survival, we are working on longer-term goals. One of those is paying for Ezra's surgery and care. The costs associated with transplant often exceed half a million dollars and are a long-term problem. The hospital put us in touch with a charitable organization called the Children's Organ Transplant Association (COTA), an organization dedicated to organizing and guiding communities in the raising of money to cover transplant-related costs.

Date Night

Some people go on dates on the weekend. We draw all of Ezra's meds for the next day. It takes about 1.5 hours every night. We have a system down with bread tins for each time slot. We are extremely lucky to have the minimum number post transplant but it is still 14. Sadly, we also found out that insurances don't like to cover anti rejection meds. It will be $500-2k a month for the rest of his life. Looks like we are going to be creative for those future date nights. Creative suggestions welcome. Lol

Thriving

 

Ezra has been a rock star with catching up on milestones. He is able to do so much more now that he has good blood profusion with a new heart. He is holding up his head better and getting stuck when he rolls over. It's music to my ears when he whines and cries because frankly it means he is alive.

Blood Transfusion

Our nutrition specialist wants to keep Ezra on fortified formula still . It's basically the only thing that will help him fight off illness while he is immunosuppressed from his anti rejection meds. Clearly is doing the trick!

Here are comparison pictures of Ezra pre transplant at 2 1/2 months and post transplant at 5 months.

Coming Home

Ezra finally got discharged!

On Saturday Ezra got to leave the hospital. He still has high blood pressure because of his oversized donor heart for his small and restricted veins. He is on four blood pressure medicines, which make up a chunk of the total of 45 doses per day of post-transplants meds. We are happy that he is home, especially Danagan and Piper, but are overwhelmed trying to get a schedule organized to care for him.

 






 
 
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