A little clarification
I have gotten several questions about our last blog indicating that we were transferring care to CHOP. Please allow me to explain for those that are curious. CHOP is on of the best places in the world to treat HLHS and so is Vanderbilt. CHOP has a Single Ventricle Survivorship program that is led by Dr. Rychik and his team. In this program, adults with HLHS are seen and managed. Its specialized care that we feel is best for Paul to have because his course has been somewhat rocky. People with single ventricles from all over enroll in this program and we are getting an early start by developing relationships at CHOP. We will likely have Paul’s third surgery there so that the folks that are following him throughout his life know him and know us. However, we are not moving to Philadelphia nor are we leaving Vanderbilt. I am not sure how this will all work, but my understanding is that CHOP will see Paul once or twice a year and so will VCH. Our doctors and team at Vanderbilt will work in concert with our team at CHOP and locally they will be our go to team. Dr. Rychik speaks VERY highly of VCH and said “I trust anyone on that team- they are totally competent and would gladly work with any of them.” Its been hard for me because I feel like I am ½ mother and ½ doctor to Paul. I want to be all mother with a little doctor sprinkled in and for US this seems like a good way to make that happen. I want to say that Paul would not be here without VCH- he would not be alive. The team there, in particular our Dr. Parra, nurse Karen, and nutritionist Kayla are helping us raise our little one- we COULD NOT do this without them, literally. I rely on Karen our nurse so much. I probably talk to her once a week with worries and updates and she graciously and kindly listens to me and says “your not bothering me.” For Paul’s first birthday we are collecting donations for VCH in Karen’s honor. She will decide where the money goes and I know she’ll make a wonderful choice! Kayla is starting a tube weaning protocol at VCH and is going to help us wean Paul from his feeding tube when we deem it’s safe- she’s brilliant beyond her years and it makes me feel so good to know she’s on the case. Dr. Parra has spent countless hours reviewing images of Paul’s heart for us and listens when I am worried about things- he entertains my gut feelings even when they are wrong and a little crazy. We also have a cardiac fellow named Jessica who is a mother and compassionately explains things to us and even called me the day after Thanksgiving when we got the letter from Boston. There are countless speech therapists, nurses, fellows, care partners, and practitioners that have helped us on our journey. These are GOOD people- GOOD professionals and we would never want anyone to think that for any reason we don’t believe in them- if we did not believe in them we would be moving to Philadelphia! We just need to add to our team. Dr. Rychik will be the architect but VCH will be the builders if that makes sense. Anyway, I had a lot of questions and read and re-read what I wrote last time and understand how it may have been misconstrued. Also, I think the term in the medical field “primary care” means something different than “architect” – not sure what but I think those words were very finalizing.
In other news, the birthday is coming up!!! Can’t believe he’s going to be one tomorrow. What a year- we would not be here without all of you and we love and appreciate you so much!