yesterday was a big long day at the hospital for us. we got a full in depth tour and explanation of how our otto’s heart surgery day is going to go. i hope that through all of this if anyone else is going through what we are going through they get a chance to read this and can prepare themselves a bit more. because with each appointment we are not 100% sure what we are supposed to expect. one thing we do know though every appointment is long so pack for a days journey haha. yesterday was our “pre surgical meeting” and we knew for sure he was going to get x-rays and labs but we weren’t sure what else.
we arrived at the pediatric cardiology unit and met with the P.A. that would be working with Otto throughout the day. i was surprised by how much i liked this guy. he was personable, he talked with us instead of to us and made us feel very comfortable with our decision to stay with our plan at Helen DeVos. i think the thing that stuck out to me was every time he asked “any other questions?” and we would say “no” then follow it up with “well…. insert question here” he never got annoyed he never hurried us. he took his time. we even talked sheep for a bit as he grew up on a little farm as well. i thin the most comforting moment was when we were talking about the schedule for the actual day of surgery and he saw my eyes fight back tears he just stopped mid sentence, looked me directly in the eyes and said “we are going to take good care of otto, i promise” and i really believe him. from that moment on i just felt this peace that these people… they don’t see otto as a number or insurance bill they see him as the little fighter he is and they are all part of his team. we are all part of his team.
from there we met with a child life care worker which after hanging out with him the rest of the day i think has to be one of the most interesting jobs. he will be assigned to otto throughout otto’s stay at the hospital as well. they explain things to children who are old enough obviously but work with families with small childrens to understand what is going on, make sure they are getting the proper developmental care while in the hospital and are called in to help comfort children while procedures and other check ups are going on. our guy took us all around the surgical floor and walked us through the exact steps we would be taking that day. all was good until we got to the “see you later door”. where we would eventually part ways with otto. i couldn’t really tell you what it looks like because it was like a big beige bastard block that shouldn’t ever need to exist. (ask me how i really feel). i’m quite pissed we have to meet up at that door again but i keep reassuring myself that after he comes back through that door he will be on his way to being well. to feeling better and to go on living a “normal” healthy life. i use the term normal loosely as we are his parents after all.
from there we were shown the waiting room where we will be until otto is in recovery and we can go see our sweet boy. we were prepped for what to expect the day after surgery, the days to follow and what recovery will look like. it feels good knowing that of all the things to worry and wonder about we will not be wondering where we are supposed to be when.
after that we got chest x rays done and then some blood work and we were on our way out the door. it was a super long day but like i said one more step to get otto well. walking through that tour i don’t think i’ve ever held him so tight. he did so good during his x rays and blood work. didn’t cry didn’t wiggle. i was so proud of him he just looked so brave. i wish i could explain to him what is going to happen, why we have to do this and that it’s not his fault. however the flip side of that is hopefully he will never ever remember any of this. someday joe and i will explain his scar to him and why he had to have it. i hope though he remembers how much we love him. how much we researched, called, traveled and most of all prayed for his healing. i hope he knows someday how many people were praying for him (even tony at the hospital smash burger who came and told us he prays for him), advocating for him and working for him. i hope he knows someday all of the beautiful wonderful things people did for our family while we were going through all of this. i hope he knows this world to be a beautiful place full of beautiful people.
this weekend we are going to spend as much of it together as possible. similar to how joe and i celebrated the days before otto came in to our lives. we are going to relax, reflect, breath and just be together before we embark on this big journey.
My heart breaks for you that you all have to go through this, but on the other hand it rejoices that there is help and lots of hope that Otto will get through this whole ordeal like the little fighter he is and that one day all this will be behind you and you will be worrying because he’s trying to climb a tree or swinging on monkey bars and you are afraid he’s going to fall!