Wednesday, March 30, 2016

Palliative Care: Part 4

            There will be more surgeries. At least one that we can count on, the Fontan, but it is, hopefully, a couple of years away. Still, our last visit with the doctors and trip to the hospital was comical. After all the stress we went through just attempting to have some semblance of normalcy, we walked into, well …

            We thought everything was going great. Our little man was full of energy, rambunctious, and working on trying to keep up with his brothers. So when time came for our six month checkup, I was ready for it. We went in Friday for the ultrasound, J3 was a champ, and we continued on with our weekend. Wednesday rolls around for the actual doctor’s appointment, they only come down to the clinic once a week, all five of us are chilling in our room when the doctor walks in.
            “So, have you decided to have the surgery Friday or wait until Monday?”
            We were shocked, having no idea what he was talking about. The doctor quickly realized the problem and explained that the archway that had a last minute procedure done to it during the bilateral Glenn was kinking and causing a drastic blood pressure difference between his upper and lower extremities. I should mention that he is always a little purple so we didn’t notice the difference. The doctor explains that they want to do an angioplasty to fix the problem.
            I call my mom and the decision is made for Monday. We have to go down Sunday to do all of the pre-operation procedures. We get a hotel for the evening and are back at the hospital early the next morning. At this point I would rank us as pros at dealing with the hospital. We take him to the back, they put him to sleep, my hubby and I go get breakfast and we wait.
            “Well, the procedure went great.” I do a little mental dance and cheer. “Unfortunately, it didn’t work.” Well, crap.
            The doctor explains that they want to go in through the side so that they don’t mess with the heart because it is working perfectly, as perfect as it can work, but that it will have to wait a couple of weeks until he recovers from the angioplasty. And it is at this point that my son shows just how strong he is.
            By the time he has recovered from the anesthesia, he is already standing up in bed. The nurse is doing the best she can to keep him preoccupied and sitting down. The surgeon comes down to check on him and decides that since he has already recovered so well, they can do the surgery in a couple of days. This works for us so that my mom doesn’t have to leave and then return two weeks later. The drive between us and where she lives is a ten hour drive. My hubby and I spent two days trying to keep our son happy. The nurses have brought in enough toys that our room looks like a play center.
            Wednesday comes and J3 goes back early. Hubby and I have breakfast, take a walk, and wait. The procedure went great. J3 is now more part cow. This is a personal pleasure of mine. I love cows and he has cow grafts because there is a less chance of rejection. So, now my son is part cow. :squee:
            First day out of surgery and he is already sitting up and spinning in circles. The poor nurse spends more time untangling J3 than anything else.
            Second day out of surgery and J3 is now actively trying to remove his cannula and Foley. The doctors decide to discontinue both. If he makes it through the night without any issues, they will pull his lines and downgrade him to intermediate which makes my hubby and I responsible for his care.
            Considering everything we went through during the first seven weeks at the hospital, everyone is surprised by his size, his amount of energy, and his recovery time. In a single week, he was prepped, went through two surgeries, rebounded from both, and was discharged.

            J3 is resilient, happy, and loving. He is smart and curious. He is my daily reminder that God exists and is amazing.

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