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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

Checking for Clots

The nurses check his blood flow with a doppler three times a day. This gives them an idea of how the clots are doing.

Fighting many fronts

A few hours before Ezra went into transplant surgery his left leg began to change color from its usual gray color to a darker and bluer shade. His PICC line, was inserted into that leg, and when it was tested, it was not fully functional, confirming the presence of a clot. Ezra was put on IV anticoagulants to treat it. 

Day 13 Post Surgery

This week, on day 13 post surgery Ezra was discharged from the cardiac ICU to the recovery floor. The surgical recovery floor nurses have more patients, and parents are more hands-on with care. We are preparing for final discharge. This phase is more casual and we have the new privilege of taking him off his monitors and walking around the hospital with him, almost like a normal baby! We like to take him to the rooftop garden. It has sweeping views of the mountains and space needle. He loved the sun and breeze on his face. It feels good to be going downhill away from the transplant rather than slogging uphill toward it.

Checking everyone....

When Ezra was diagnosed, before he was born, we asked one of the cardiologists if he felt it would be prudent to get our other children checked for congenital heart defects, but he didn't feel it was necessary.

Precious Moments

Last night I stayed extra late with Ezra before going home to sleep. It was the first time we have taken him off his monitors in 2 1/2 months. I laid with him on my chest cord free and it was amazing! It was a sweet taste of finally having him back home very soon. I felt his completely healed chest and very strong healthy heart beating. Yet again I was overwhelmed with gratitude for his donor family and the difficult choice they made only 12 days ago.






 
 
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