-Aaron
This trip to fix Nathan in Minnesota has been a lot tougher than I thought it would be. Nathan has already been through more than any kid his age should have to suffer through. I thought this would be a piece of cake, after all he was doing externally great when we came here. Nothing but smiles and laughs. It's been a test of faith and suffering, but our boy is still here. He's alive under all of the meds and he's a fighter. This is the story of the day of his first surgery in Minnesota (3rd overall). I'm going back in the past a couple of weeks but it seemed like a good place to start.
Minnesota Day 3.
The morning of the big surgery started bright and early at 5AM. Nathan was allowed "only clear fluids" so we gave him his first cup of apple juice ever the morning before surgery and he drank it up like it was the best thing he ever tasted. They gave us this yellow disinfectant soap that we had to rub on him to prepare him for surgery so we stripped off his clothes and put him in the sink for a quick bath in yellow water. We dressed him up in a big white abominable snowman outfit and I tickled his tummy with nibbles one last time. He laughed hard so I did it over and over until he was sick of it and I was biting back tears.We took a couple of pictures with him even though we didn't feel much like smiling.
St. Mary's admitted us right away and took us down to the first floor where the OR is located. We had a private room but we could see others in their rooms looking nervous, waiting along with us. The nurse was thankfully friendly. She had things to do to prepare Nathan but he had just fallen asleep in his stroller so she let him rest until she couldn't wait any longer. They took him out of his snowman outfit and put him in a really cute surgery outfit that was white and had colored letters of the alphabet all over it. To help take my mind off things I took some pictures of him rolling around on the surgery bed, playing with his feet and giggling. They finally came in the room to take him. Two men came, one young the other older. The older man was probably in his 70's and his name was Dr. Oliver. We later found out he was the oldest living survivor of Cystic Fibrosis in the world. Both doctors were both extremely nice to us. The younger doctor asked us if we'd like to say goodbye so I picked Nathan up from the bed and turned around to the corner of the room. I held him, whispered I love you in his ear and cried. I turned and gave him to Jessica and she did the same but with more composure. She handed him off to the young doctor and they walked away with him out of the room and down the hall. They asked us if we wanted to follow and be there when they put him to sleep. We didn't.
Jessica and I got about 5 minutes alone together before being moved upstairs to the 5th floor waiting area. I don't know if any of you have ever waited to hear how someone is doing during a major surgery but every minute feels like an hour. Time drags on and you hope to hear something from the communicator, anything really, you just want to make sure the person you love is still there. We got periodic updates, once every couple of hours starting at 7:30AM. At some point, I think it was around 4 PM, Jessica got this terrible feeling like we'd lost him for a moment. She couldn't even talk the feeling was so strong. I rubbed her shoulders and told her he was fine and he'd make it out of there soon.
The surgery finally finished around 5:30PM. Technically speaking the surgery was a success. They replaced both the tricuspid and the pulmonary valves. They used this core matrix membrane stuff on the leaflets of his tricuspid valve that's supposed to act as a scaffold for the living tissue surrounding it. Over time the membrane will become living tissue if the experiment works. This amazing procedure has only been tried on 4 other people ever! Only time will tell how successful it is. Unfortunately Nathan was unable to come off bypass after the surgery. His heart couldn't squeeze strong enough to support a good blood pressure so they brought him back to the room on ECMO where we waited and watched over the next couple of days to see what he could do. This is where we end for this post, but will continue to write about the other days at a later time (it's a lot to write all at one time) ;)
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