Today was the day that Keith and I spent 22 months of researching about; 22 months of looking for answers, becoming advocates, being cheerleaders, networking, and planning for this exact moment: The moment when JP would have surgery. We couldn't believe it was finally here and it became a bitter-sweet day.
We got to DuPont (a children's hospital) around 6:30AM where they brought us back to the pre-op room. The pre-op experience was so overwhelming; well, maybe just for Mommy. We met fabulous nurses who helped us through the preparations for JP's surgery and his surgeon/doctor came out to see us and talk us through what will happen one last time.
It really was a bitter-sweet day. All the RNs and (of course) JP's doctor were great and understood our emotions were running high, but for this Mommy and Daddy, it was strange. For as happy as we were happy the day was finally here for us to start "correcting" JPs birth defect, it was still so painful. JP did great. He did everything they needed and never fussed or complained. Daddy was strong and listened to everything that the RNs and Doctor said to us. Mommy, though, had a harder time. She cried at almost every conversation. Mommy thought she was so strong, but when it was time for her to hand over her baby for surgery she felt like she couldn't do it. It had nothing to do with what was about to be done; nothing towards the Doctor or nursing staff, but just the fact that she couldn't part with her baby for 6 hrs or so and know that when she saw him again there would be such pain. In fact, she felt shame - this women who speaks about FH and all the possibilities fell apart when it was time for her.
It was a long 6 hours being away from our sweet baby boy, but it went well and I was able to compose myself thanks to my amazing husband. He reminded me that this was the right decision and best decision for JP. Once the surgery was over, JPs amazing doctor (and our hero) came out to talk to us about how it went. JP had undergone 11 procedures that day (maybe the most in one day or at least that Friday). The Dr. also showed us pictures of before and after and it was so cool to see JPs new leg! Although the vision was fleeting for us (we can't really picture it anymore), we know it was amazing to see and can't wait for it to be our new "normal".
After surgery, we got to be with Jonathan in post-op. He wasn't doing great. He would sleep and then freak out for a while; he was having muscle spasms, which is common with his procedure. Once they gave him some medication to help (valium) with it, he was resting comfortably again.
After surgery, we got to be with Jonathan in post-op. He wasn't doing great. He would sleep and then freak out for a while; he was having muscle spasms, which is common with his procedure. Once they gave him some medication to help (valium) with it, he was resting comfortably again.
The first night he did great. He slept well barely waking for his meds and never making a sound. Unfortunately what he did do was roll over and break the line for his epidural while sleeping which meant they had to take it out and begin oral medication for pain. By early Sat morning, things had changed for the worse. JP had uncontrollable "freak outs" where there was no way we could comfort him. It was so hard and many tears where shed by him and Mommy. It got to a point where I questioned our decision. Was Lengthening the right choice for us? For him? Could JP handle it or should have we just amputated? Needless to say, Saturday was a very hard day for us; to watch your baby in pain and have no way to comfort him was just awful.
Later that night, we decided maybe it was time for JP to get out of the room and maybe it would help him to relax. So, we got a wagon and we walked the halls of DuPont. JP turned into himself again; starting to say hi to everyone we passed, enamored to see different scenes, and just relaxing - finally.
We soon realized JP hated to be in the hospital room anymore. In fact, he would only sleep in the wagon after we walked him around the halls. He just would not sleep in the hospital crib! So, Saturday night, Mommy and Daddy spent a lot of time walking the halls and finally getting JP to sleep.
Saturday night was rough, but only for the fact that every time he needed meds or his vital checks he would wake up and it would take a while to go to sleep which usually was walking him again through the halls in the wagon or sleeping on Mommy.
Sunday came and JP was like a new kid. We walked around a bit, played in the lounge, and had a nice visit with his big brother and grandparents. The old JP was slowly coming back and we realized we had made the right decision for our family. We also realized he just wanted to be at home in his own comfortable place.
A little later that day we got the okay to go home. It was a bit of relief for all of us! Although I was scared about going home without a nurse to assist us, I knew my baby would sleep and relax better and that was exactly the case! He went to bed on time, slept through the night and wasn't happy when we woke him up for his meds. A totally different experience then the hospital.
Monday was a little harder for us. JP had moments of unhappiness and we were still trying to figure out exactly what it was, but we also had moments of "our" JP. He is on the road to recovery and while it won't be easy, he's already figured out how to get around to do what he wants to do!
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