Becca's Story Part 5: Post Transplant Journey Begins
After JR was back up to his room we left the hospital at 12:30, we were back at the hospital by 7:30 because we didn’t want to miss when the Doctors Rounded. (this was very important to us the next week to be there for rounds) The Doctors came around and we all fist-bumped, high-fived, blew kisses, and just had a moment to celebrate such a Joy!
Dr. Kindel and Dr. Raskin were very happy with how JR was doing less than 12-hours after surgery. He did have a little bit of a higher heart rate but they weren’t concerned since he was still so fresh after surgery. I can’t even remember how many medicines JR was on I want to say upwards of 20. Many of them anti-rejection medications along with pain meds.
After 5 days JR was able to get extubated and they also lowered his paralytic drug so he was able to start wiggling and holding our hands opening his eyes. The next few days JRs medications dropped significantly which also meant JR became insanely cranky. Between having withdrawals from his pains, horrible acid reflux, especially after feeds, and still not being able to hold him it was extremely rough! It was quite a while before the Doctors were able to figure out which medications were going to be best for him.
JR was usually a pretty chill baby when he would get tired or fussy he would just like to go to his crib. After the transplant, you couldn’t hold him set him down nothing he would just scream. It was quite trying but we made it through!! Roughly 2.5 weeks after going home it was determined that JR was going to be needing to get a GTube as he was not taking full feeds by mouth. He was getting the rest through an NG tube that was in his nose but they did not want to send him home with that especially since he pulled it out soooo many times!
We again had to prepare for JR to go under for another surgery which after sending him for his open heart definitely didn’t seem as bad but we still knew there were always the what-ifs. JR recovered very well from his GTube placement and thankfully had no hiccups.
A few days later when we were there for rounds we had heard the most magical words….As soon as JR has his one-month Heart Cath and everything comes back well we feel comfortable Sending him HOME!!! We were ecstatic!!! JR had his heart Transplant on January 17th we packed up our things and walked out of those hospital doors with our baby boy on February 15th!! It was the most amazing feeling to be able to hold our baby without being attached to any wires, monitors, or IVs!
We were so excited to get home and for Audrie to meet JR! We set JR down in his car seat and I’ll never forget Audrie saying
“Mom just get him out so he can walk around and play with me please!”
It was the cutest thing. After telling her he could not walk yet she grabbed the bobby pillow so she could finally hold her baby brother. My mom's heart melted immediately.
After we got settled in at home we quickly realized how crazy this was truly going to be. We had to get all of JR's medications in a safe place, figure out how we were going to store them, get all of his meds drawn up for that night along with get his feeding pump hooked up. Ooo yeah and then take care of 2 kids and ourselves! Thank goodness my parents were there and able to help us get a few things in line! Once the kiddos went to bed which thankfully they both zonked out quickly!
Joe and I then took on the task of organizing more things and getting JR's 15 medicines drawn up for the next day which some he needed multiple times a day. JR was also getting fortified Breast milk which meant we needed to make that up for the next day.
The next hurdle was Joe going back to work and family get-togethers. I was terrified to be home alone with two kiddos who both needed my attention the majority of the time it was at the same time!! JR needed his meds Audrie needed to go potty, JR needed a nap Audrie wanted to eat. Once again Mimi to the rescue and came to at least help me entertain Audrie!
Family get-togethers were very hard. JR was extremely immunocompromised so we had to be extremely careful. If anyone had any sign of sickness we couldn’t be near them. Many times we would go to get-togethers later after people were gone or one of us would stay home with JR.
Next thing we knew JR was 3 months post Transplant and was due for his Heart Cath to check the function of his new heart and for any signs of Rejection. The nerves were high!!
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