Heading to CHOP
I can not believe I have not updated our blog in TWO MONTHS! Oh my… We have been through sickness, birthday parties, church services and exciting family changes. Dan and I have been to Florida and back and Paul has spent a glorious week with his grandmothers. We have been to cardiology- where things look pretty much the same- the heart function has been slowly improving over the last year. We have been to the park and to Belmont Greek Week (don’t judge- I still love that stuff) and to friends and families homes. Paul is almost walking all on his own. He has been gaining weight, eating well, and is working hard to drink some… So we are using the tube still and that’s ok.
We are praying that Paul remains stable until his next surgery. As you may know, we made a choice to transfer Paul’s surgical care to CHOP. We have been working with our team at VCH and a new team at CHOP as we make decisions and plans for Paul. Dr. Parra and nurse Karen remain our go to folks in caring for Paul and have been patient and kind to us as always.
On May 2nd we will travel to CHOP. This appointment will include an echo, ECG, blood work, and us getting to know our new Philadelphia family in person. We have a cardiologist named Dr. Jack Rychik who will be following Paul and Katie Dodds will be our clinic nurse practioner. They are both 99.9% sure that we will move forward with having a cardiac MRI on May 3rd. While Paul is in the MRI scanner, Dan and I will meet with our new surgeon, Dr. Thomas Spray. Paul will have his 3rd open heart surgery at CHOP and Dr. Spray will do that surgery.
We are doing the MRI to look at the following:
1) Right ventricle function
2) Valve regurgitation
3) The space where Paul’s Sano conduit was placed in his heart looks a bit suspicious on some echos- we will look at that.
4) The flow of any collateral vessels
5) His left pulmonary artery
We are praying hard that the MRI shows us:
Good function, no valve regurgitation, no real problem with the former conduit space, no horrible collateral flow, no worrisome dilation, a good looking pulmonary artery, and no other scary or strange findings. I hope they say to us- your all good for a while. Paul’s oxygen saturations have been a little lower lately and we pray that’s no big deal too.
Wish us well and we will keep you posted….