MRI results and updates
The results are in and they are “tickled pink” and “pleasantly surprised.” The MRI was revealing and the following things apply to Pauls heart:
1) His valve leakage is trace and within the normal range (even for a healthy heart)
2) His collateral blood flow is 34% which is to be expected and may or may not need to be addressed with coiling before the next surgery.
3) Both of his pulmonary arteries are small but they are wide open- the hope is that over time they will grow. They have good blood flow and if they ever don’t have good blood flow, they can address it in the cath lab or via surgery.
4) His function is not bad at all. The ejection fraction measurement is 50%. CHOP has indicated that children with HLHS have an EF of 40-60%. They are not concerned until it gets below 40% so Paul is right in the middle. While his wall motion is depressed- meaning the rate at which his heart squeezes is slower in some places, this does not matter if the EF is in an okay range. So, the EF is the real measure of function and his is ok.
5) The left ventricle cavity is really little- that means its highly unlikely that he will ever have a bi-ventricle repair. That’s ok- we expected that.
6)They want to do the Fontan in the summer of 2014 and think he is an ideal candidate for that surgery.
Medical science changes everyday. 30 years ago, Paul would not have survived being born. CHOP is working towards helping these children live a normal life span. They shared with me that the 3rd surgery is not the answer to a forever life. It buys time and in some children its buying 2-3 decades worth of time- we only say 3 decades because that’s as long as the surgeries have been around, certainly there are folks who may get beyond that without the need for transplant. We are pretty sure that this physiology will not last an entire lifetime. That stinks but there is another side to the coin. In 10-20 years, they will have better ways to address the issues that often arise with the Fontan. So, the hope is that by the time Paul needs post- Fontan intervention there will be better ways to address the issues that arise, giving him the chance at a long and happy life. They indicated to us that on the bell curve of children with HLHS at Paul’s age and stage his is right in the middle- right where he should be.
So the plan for now and the hope is that in the summer of 2014, we will move to Philadelphia for round three. We will sublet a space there and stay until Paul is recovered. Please pray that Paul DOES lead a long and happy life. That the next surgery timing goes as planned and that he continues to grow stronger and healthier. Please pray that he gets to the other end of that bell curve… Things can change with HLHS quickly- I am trying hard to let go and focus on what’s real right now, today and pray that things stay ok and even get better with time.
Since being intubated for the MRI, Paul’s had some trouble swallowing and had some noisy breathing. No one is too concerned as his lungs sound ok. This means that we need to go back to a swallow study to assess for aspiration and that he might be noisy for a while. Please pray that the breathing subsides and that he can swallow safely again soon. Other than that, we are focused on letting him be a kid. He is walking and playing and climbing and is QUITE the personality these days. We love him so much, so deeply and continue to hope and pray that he outlives us.
In other BIG news- Dan’s last day in the workforce is TODAY- not forever just for a few years. He is going back to school full time in August to be an elementary school teacher. He is going to none other than my alma mater- Belmont University!!! I am beyond proud and excited for him. To that end, I’ll be working and with Paul and he’ll be schooling and with Paul. It’s a bit strange for me not to be with Paul all day everyday but we are adjusting nicely. Dan is amazing. He is the BEST parent I have ever seen and I strive to live my life with his sense of joy and calm. He is going to be an incredible teacher and we could not be prouder.
Finally, our family would like to ask for you to say one more prayer. Many of you who read this blog know my friend Becky. Becky has been battling lymphoma for a while now. She is one of my favorite people in the world and used to come sit with me in Paul’s room after a round of chemo in the adult hospital. I have known Becky for over half my life and I can not imagine life without her in it. Last week, she developed some significant respitory issues while on vacation. She is currently in the ICU, intubated in a medically induced coma waiting to get strong enough to be transported back home. Please pray for strong lungs and forward progress for her. I know if she were able to talk to me right now she’d would be cheering “go Pauly!” for the MRI results and telling me to let go a little and have some wine. We love you Becky and all of Paul’s virtual family is behind your recovery.
Every day is a precious gift. Every single day. I thank God for each of you and for who Paul will become.
Paul is playing in Mr. Kevin's office (the Fraternity/ Sorority advisor at Belmont) he's saying "go Daddy! go Bruins!" Thanks Kevin for always letting Paul be a kid with you!