UPDATE BELOW!
this past Friday, Gianna had a routine heart echo and full evaluation. She was so brave and for the FIRST time did not cry at all during her echo…..I was SO proud of her as she squeezed my hand and grinded her teeth…..I could tell how hard she was trying. WARRIOR!
She asked for a balloon and OF COURSE she got one……GO GIA!
According to her echo with her local cardiologist, there’s a “significant” rise in pressure on the right side, with back flow on her left ventricle (her new ventricle ). …. this indicates a possible left ventricle decreased function and compromise. And With her lack of growth on the growth chart….this adds to the concern that her heart could be struggling. But she needs monitoring. The cardiologist says for her to come back in January for a full evaluation then to decide from there the possible next steps if pressure continues to rise. Perhaps a heart catherization?
Her pressures jumped significantly since her May 8th echo.. w back flow on left seen yesterday .
I worry that waiting till January to do another echo is just too long.
What if pressure gets worse quickly?
Truthfully, I am not ok with this plan without consulting another trusted opinion.
So, I wanted to contact her Boston team.
I Emailed them and they told me to send her records asap…I’ll feel better when they see the info first hand and chime in. They have held her heart in their hands. ….I’ll have a peace when I know what they recommend for our next step to be.
I won’t try to pretend this didn’t feel like a surprise gut-punch …….
but, we also know that the miracle surgery that she recieved was of such a complicated, delicate, and risky nature that it is not surprising that there could be possible post-op difficulties. We will continue to trust our God who holds her heart in His hands. He knows….He has a plan. So we pray …..
Thank you for loving our Gia and praying with us…..she’s a brave fighter and we just gotta get that heart of hers back to a “happy place” …. wink emoticon
UPDATE AFTER SPEAKING WITH HER BOSTON CARDIOLOGIST:
We are still awaiting the opinion and review of Gianna’s Boston surgeon, but her Boston Cardiologist reviewed her latest echo and her past Post-op echoes.
He called me today and It is determined that Gianna has Mitral valve stenosis (blockage in her artificial mitral valve)….this is causing the higher pressure and back flow in the left ventricle.
That’s the bad news.
But, the good news is that there is NOT a HUGE change from her May echo to her September echo……Although, he did want me to know that every heart is different and that this does not necessarily mean that her blockage will not get worse but it also could mean that it may stay the same.
Worst case scenario: replacing the mitral valve with heart surgery :(.
Best case scenario: everything stays the same and does not get worse and we continue to monitor closely!! (PRAYING!!!)
miracle-case scenario: the blockage DISAPPEARS!!!! Pressures go back to a safe level and all is perfect!
WE PRAY FOR THE IMPOSSIBLE, FOR NOTHIN IS IMPOSSIBLE WITH GOD!
All in all, he agrees that this needs to be monitored and he agrees with her getting a follow-up in January to see and measure if all stays the same or gets worse and then decide the next steps from there, which would be a catherization if the pressures get higher and the blockage greater……
and he offered the option for Gianna to come up to Boston for a follow-up so he can see her first hand, and to see how she is doing “clinically.”
However, if she appears to show signs of struggle at all from now till January (he gave me things to look for that would indicate greater pressures) then, she is to be seen asap!
Again, we are still waiting to see what the surgeon says….the amazing doctor who performed her bi-ventricular repair….we are assuming he will be in agreement?
But, for now….we are thankful that we have all the way to January to pray for miracles! We covet your prayers for healing and that her blockage does not get worse!
and lets not forget Our little Gianna has a HUGE “MAKE-A-WISH to stay healthy for…so
We covet your prayers for her!
THANK YOU SO MUCH and we will keep all her prayer warriors update
