This past Tuesday Jack had a followup with his cardiologist in town. It all went well, he was so cooperative (which surprised me after all he's been through), he had a great Echo and a beautiful X-ray. Dr. Weineke asked me if I had been watching his oxygen saturations at home and I told him that I had not. I explained that I needed a break from watching them. He told me to take a good break for the rest of the week but to start watching them again this coming week. Boo. Honestly his oxygen saturation is the most depressing thing for me right now. Its hard to look back at pictures and see how pink he was at 92. Now he has cyanotic episodes that are really hard to watch. Then his night saturations are REALLY terrifying! 50s and 60s are not good for anyone! I'm hoping and praying that his saturations are settling out and will stay in the 70s at night.
Otherwise Jack has been doing good since we've been home. He takes all his medication really well and hasn't been fighting the oxygen placement at night! I've noticed he is trying to say more even though I'm probably the only one who knows what he's saying. Tonight he didn't want the rest of his dinner so he said "Hudsie eat" and Hudson happily accepted it with a "tank too." It was cute! Jack had also been talking in his sleep. The other morning I got up and heard him say daddy over the monitor. I ran back to his room and he was sound asleep. Multiple nights he has said "Hudsie" and laughed but the other night he said "Bye Hudsie" and cried. It broke my heart because when I touched him I realized he was asleep. I'm sure those weeks were hard on both of them.
Our plans for now are too watch his saturations until his follow up week after. MUSC called and they are deciding which clinic to place him in, so I will let you know more on that later. We are going to SLOWLY resume therapy because I don't want to push him too quickly! I want him to be happy and to heal!!