We are in Cincinnati and Jake has been a happy kid. He and Aidan were so good during the 3 hour trip (So much better than the 9 hour drive we usually take to Philly). Jake fussed for about 5 minutes when we were almost there but other than that they were both happy campers the whole time!
Our morning starts early tomorrow. I have to feed Jake at 6:45 because he can't have any food after 7:30 and I want to give him time to eat. He can have pedialyte at 11pm but nothing after that because of the sedation for the echo. That means he should be getting hungry around the time for his pulmonary visit.. hope he likes pedialyte.
We meet with pulmonology at 10am. They are not doing any testing because its his first visit with them but we may have to come back next month for that. I want to discuss his breathing because the bethanechol has not helped at all and he has been on it for 4 months. Jake will then have a sedated heart echo at 1:30pm. It is not cardiac anethesia just a twilight kind of drug to make him sleepy. Otherwise he would fight them so bad they wouldn't be able to see anything.
I am really praying everything looks well on the echo. It has been a while since he has had one so I always get nervous. They will check his tricuspid regurgitation and hopefully it has not gotten any worse. This is leakage around the tricuspid valve. It happens because the right ventricle is enlarged so the valve doesn't quite match up. I am also hoping his heart function has improved. He is on Captopril because he has always been on the lower side of normal.
It will be a long day at the hospital so we decided that my mom and Aidan would not go and I would take Jake alone. My mom is taking Aidan to the aquarium.
The last time I was here I got the worst news of my life. I found out my baby had the most severe heart defect there was and that we needed to decide if we would have him or not. We couldn't terminate (If Jake was not going to make it I wanted to tell him I loved him and know I did everything possible for him) but we had to prepare that our baby may not survive. Thank GOD he did and we have much to be thankful for now a year later. I am hopeful we will get only GOOD news this trip. Please say a little prayer.
I will update tomorrow.