Becca's Story Part 3: The Waiting Game
After we had gotten the news that JR was officially on the Transplant list time seemed to slow down. During this time there was not a whole lot going on. JR overall was doing great with the occasional scare of plummeting o2 levels, going Brady, and just doing everything to get him to snap out of it. Along with plummeting O2 levels, JR did receive 4 blood transfusions so he would have more volume of blood to raise his O2 levels I'll never forget the beeps and boops learning which each one meant some scarier than others.
Our biggest thing was for JR to gain weight! He received OT and PT every other day along with speech therapy to make sure he was taking his feeds ok and learning the proper way to suck suck swallow. JR also got Music Therapy which was by far his favorite! The therapist would play her guitar sing beautiful songs to him and have many things for JR to touch, shake and look at. To this day Music will instantly calm JR down and make him happy!
During this time, we also had to balance quite a bit. We had to keep the Christmas spirit and magic alive for Audrie and make sure she had an amazing Christmas! We did as many activities with her as possible, which was also hard because we wanted nothing more than JR to be home with us experiencing all the Christmas traditions. Joe also went back to work as we still needed to pay the bills.
We had been living with my parents during all of this crazy and after New Year's we decided to move back home! It was January 13, 2021, I was visiting JR per usual he of course had to drop his O2 levels to get some excitement for the day. After that Dr. Kindel came in and talked with me about scheduling a Heart Cath for him in February to see if he would be a candidate for the Glen procedure.
I'll never forget before Dr. Kindel was about to head out he said or what would be even better is he gets his heart this weekend and the Cath can be for his one-month post-transplant! I called Joe and told him, and we prayed that that would be what would happen. It was getting so hard not having JR home with us and we were worrying for the future.
January 16th,2021 8:23 am we are getting ready to head down to the hospital to see JR. My phone rings I see CHOW so of course I answer thinking well I just need to bring more milk, or we had missed rounds that morning. Boy was I wrong!!!
"Hi Becca, it's Alyssa from the Transplant Team....we have a potential heart for JR!!!"
Fairly confident my response was...
"What are you serious?? Holy shit seriously there is a Heart??"
I immediately blacked out and handed the phone to Joe. He got all the details while I jumped for Joy with Audrie that her brother was going to be getting a New Heart!! Once finding out the details Joe and I packed up our bags dropped Audrie at my parents' house and went down to the hospital to figure out what the next few days were going to be like!
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