We checked in and got our badges. Once we got settled into the waiting room, a nurse came out to say hello and to let us know it would be another hour before we went back. Jack did the best waiting of his life and entertained himself with crayons and markers.. And ended it with some tablet time.
We got called back and signed our paperwork. Jack settled in on his big bed with all of his friends and his very special, very loved Soxy blanket from his auntie Lynne. He was even super excited to change from his regular clothes to a Johnny.
From there, the anesthesiologist came in to check his lungs.. Which Jack reluctantly agreed to.. Until they checked Fred the ted, piggy and soxy's lungs too.
Before they took him to put him all the way under, they gave him a medicine to drink to make him a little loopy. I'm my mind I was fully prepared to have to scrub in and take him in because there was NO way my little bear of a moose was going to be taken so easily... But I was wrong. He relaxed, got happy and then sleepy. He was still awake before they wheeled him off. I stroked his head and told him he was going to go to sleep and when he woke up mama and daddy would be there. He just looked at me, no words and off he went.
The nurses told us they'd be calling with an update every hour...And they have. Each time they call us, they tell us another hour. We went to lunch, our for a drink and a coffee... Which sounds like a nice day date.. But when you know your son is out with a breathing tube in his throat and caths up his groin and down his neck, it's anything but nice.
We got the call that he was out and headed up to see him. They had tucked him in nice with his blankets and all of his friends were gathered around his face for when it was time to wake up. We spoke to the nurses and the doctor that performed the cath. They said everything looked good and went well.. they didn’t place any coils, but they did put some “chemical surgical foam” on both sides to block blood flow to help the surgeons on Wednesday. Jack had to stay laying flat for 6 hours after his cath because he can’t reopen the entry sight on his thigh.
While we waited for jack to wake up in the lab, his surgeon Dr. Quinonez came in to talk to us. He sat down and took a deep breath and we knew we were in for it. From there on, things got fuzzy and scary. Because of jacks anatomy and the position of his heart, his Fontan is more complex and trickier than a typical Fontan. He was speaking but all of a sudden it was like we were driving through a tunnel and the radio loses signal and cuts out.. then the tears came. He closed the door, the nurse handed me tissues and then I snapped back into mom mode. He talked about what they’d have to do for the Fontan, repairing his leaky valve (which is also more complex because valves on heterotaxy kids aren’t smooth like a typical valve), risks, long term effects, how long surgery would be (8-10 hours), recovery (2 weeks)... And as scary and hard as it was to have this conversation, I am beyond happy and relieved that we got to have it with this man. He's amazing.
Dr.Quinonez left and his nurse Marybeth came in to check the bandage on his thigh.. It looked good and she left. As soon as she stepped out, Jack's eyes fluttered open and he immediately wanted to get up and moved his legs. The nurse came back in and went to check his bandage. I hear her say "shoot" and in the next second i see blood on her bare fingers and 2 nurses come flying in and are applying pressure and handing her gloves. It was all so calm and seamless that even though it was shocking that my son was bleeding, these amazing nurses knew exactly what to do before I could even begin to process what was happening . After some time , the bleeding stopped and they bandaged him back up. Unfortunately, that reset his 6 hours for having to stay still and laying down (Aka every 3 year olds favorite things to do).
He woke up again and we got moved to the floor.. A spacious double with no roommate and a lovely view of Longwood ave and the parking garage. He was awake when we got here and happily ate half an orange and red popsicle and downed THREE Apple juice boxes. Jeremy and I were happy to be greeted by 2 familiar faces... Nurses Danielle and Hannah! They took care of Jack during his last stay and even remembered us.
Jack is now resting comfortably (or at least as comfortable as someone can be with multiple IVs and monitors attached to them), Jeremy is back home and I'm bedside reflecting on this long day. Long doesn't really seem fitting to describe it really... And Wednesday is only going to be even longer. So if anyone out there knows of any words that mean longer than long, could you let me know so I can edit this post later?
Thanks!
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