Today was a day full of Doctor appointments. We started out our day back at primary childrens. We were meeting with our main cardiologist, Dr. Cowley. He came recommended to us by several nurses and other moms with heart babies. When we got their he asked us for our med list. I have made a binder that is filled with all of Capris information. From her diagnosis to her meds to billing information. Her own little PCSP. As he looked at all of her meds and at all of the times she was taking them he told us that that was ridiculous. It is fine to have meds like that while you are in the hospital and you have nurses being paid to just watch over your baby. In the real world however, people just cant be expected to live like that. He went through the meds talked to her other doctors, took her off the iron which has been making her sick and came up with a new schedule. Now, instead of taking meds at 12am, 4am, 6am, 8am 12p, 4pm, 6pm and 10pm she takes them at 10pm, 6am and 2pm. That in itself made my life so much less stressful.
Then he looked at her stats. She was sitting at 98 being on 1/4 of a liter of oxygen. He said she didn't need the oxygen, it wasn't helping her any because she was already doing it all on her own. She now only needs to be on the oxygen while she sleeps. That also means she only needs the pulse ox while she sleeps, so during the day we only have one machine to carry around with her. We also talked about her future and surgeries that needed to be done. He told us how he is good friends with Dr. Dererani from the mayo clinic in Minnesota and how he would like us to fly out there to have the cone procedure done within the next year or two. That was one of the main reasons why we picked him as our doctor. He was willing to send people to the best doctors in the world, not just settle for one that lives close by.
After her appointment we rushed to West Jordan for A and B's well child check appointments. B just turned 3 so hers was a regular check up plus she had a wart on her toe that needed to be removed. I wanted the dr to check A because he has always had bad night sweats and has stayed at 34 pounds for almost 2 years now. With all of Cs heart issues I wanted to rule that out. " Both A and B have perfectly sounding hearts. Nothing is wrong. I do want to check Ashton for diabetes however because it presents the same issues with weight gain and night sweats". Last night I had talked to B about going to the dr and prepared her for getting a shot for her vaccines and that we would freeze the wart so it would hurt a little. When it was time to freeze it though Dr. Boud told her we could just do a topical medicine that would kill it and is painless. As A was holding her hand he kept telling her how bad it was gonna hurt and that she was gonna cry. I think he was a little disappointed when she was fine. She also didn't have any vaccinations that were due so she got out pretty easy. Ashton on the other hand, who I told wasn't going to get a shot, that we were just going to listen to his heart had to get a finger prick. He was not happy that I lied to him. As the nurse cleaned his finger and pricked it he was fine he didn't even jump. Then he saw the blood and the tears started to fall.. Apparently the sight of blood is worse than the actual pain. His blood levels came back normal and everything was fine. 3 doctor appointments 3 good outcomes. This is wonderful! Now baby C needs to just keep eating and getting stronger. Hopefully in the next month we can pull her nj tube back into her stomach and in the next 2 months take it completely out. We just have to keep asking for those miracles.