We had our monthly cardio appt. yesterday and unfortunately the pressure in Evan's left pulmonary artery has gone over the mark - requiring intervention. We should be getting a call today with a heart cath. date. Following the heart cath. Evan will be presented to the heart board the following Monday and we should have a date for surgery the next day. Our hopes are this can be done in time that Evan is given enough of a recovery period to return to school with all the other kiddos in August. Evan of course understands all of this and had a good talk with is beloved cardio. His main concern was that he didn't want versed before the cath. Our cardio agreed that Evan would do fine without it so he and his Dr. made a plan to walk together into the cath lab and Evan will put the mask on himself. This made Evan feel much better. We told him the mask has a sleepy gas and he will fall asleep and Dr. M will take a tiny camera (I held up the post of the earring I was taking out and said - this size) and use a remote to guide it up to his heart to take pictures and then take the camera out and take the mask off and you will wake up and we will go home. Of course his response is... and then they will show the pictures to Dr. Austin and then I'll have to have surgery. I told him that, that is a possibility but reminded him of how awesome he did before. We talked for an hour at least... questions... answers... questions... answers... His need for security and stability are always so strong and he was only comforted when we were side by side talking or just being together. He slept well and the first words out of his mouth this morning were, "so it's just a cath right?" I'm praying he is having a good routine day at school. Teacher says he is doing fine.
A couple of weeks ago our support group, Team Brave Hearts, held a fundraising event at a UofL baseball event. It was an awesome day. Our Brave Heart kids got to come out on the field and our oldest Brave Heart read our mission statement. Evan got to throw the first pitch! After the 4th inning we had our Brave Hearts stand on top of the dug out holding signs that read THANK YOU while our oldest Brave Heart read a piece about our beloved surgeon, cardios and staff as they were brought on the field. It was a wonderful way for us to say thank you. UofL donated all food and drink monies that day to Team Brave Hearts - Thank you UofL for your awesome support. We have recently joined forces with Kosair Childrens Hospital Foundation and have an agreement to raise $100,000 to help build a Heart Patient only ICU. We are excited at the door opening to Kosair and our plans to help other families traveling the same path as ours. Enjoy the pictures of this awesome day.
Team Brave Hearts take the field
First Pitch
Receiving Baseballs (which Evan asked his surgeon to sign - how sweet)
Holding Thank You sign for the surgeon and cardiac team to see as they were entering the field to be recognized
Our Beloved Surgeon
Evan's favorite cardio nurses
Surgeon and a few of our Brave Heart kids (isn't it sweet that Evan & Alex are holding hands?)
1 comment:
First of all, what a wonderful experience for the Brave Hearts!! Wow! How cool.
I see a lot of the same things in Elijah that you talk about with Evan. Elijah, too, needs to always feel secure and reassured. I think our boys are a lot alike.
I'm so sorry to hear that you guys have to get a cath on the calendar so quickly. It is always a little scary when things have to happen so quickly. We will start praying now for a good report after the cath. Give that sweet sweet boy some big hugs for me. xo
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