Laura's blog

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

Blessing of Fantastic Nurses

Ezzy had had a really hard day keep things down because of all the nasty meds. Our poor nurse has changed her clothes twice already because of an assortment of projectile bodily liquids. Somehow she keeps on having a great attitude! I told her she is going to make an amazing mom someday!

Meanwhile, we better invest in a stream cleaner now before taking him home!

Missing my baby

When I got to the hospital today Ezra looked so much more grown up to me. It's hard missing on growing moments when he is in the hospital. On the other hand, we are extremely thankful for everyday we have him here on earth! He was dancing with his nurse to Justin Timberlake when I got to his room. It makes it so much better for this anxious mama when I find him with awesome nurses.

Ready to go home

These sad cheeks are done with the hospital. We are now doing blood tests daily. His potassium level has to be lowered and his immunosuppressant levels have to become stable at a therapeutic range. If you come close to his feet or legs he starts to cry because he knows a poke or a blood pressure cuff squeeze is coming. Home is so close but we know better than to be attached to a certain discharge day. We will leave our "welcome home" sign on our front porch window and hope that he can see it this week.

Training

Another part of our training this week was learning how to operate Ezra's feeding tube. Daniel did it first try like a pro. Thank goodness because both Ezra and I thought we were going to throw up. Ha.

LOL

Ezra has now lived in the hospital more days than he has been home. 86 hospital days and 59 days at home. Today he is still smiling and fighting!

We captured some of his cuteness on this video

https://www.youtube.com/watch?v=KW2BwffcYqA






 
 
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