I have always said God is good!! He is!! Having a baby is the most wonderful thing I think any woman can experience (my opinion of course). Having a baby and wondering how long you will have him should not be part of the equation. So what to do?? Take a deep breath... Sometimes a few more and live life! Love each other. Brody listens!
Brody had more appointment and the consenses is his heart function has still not fully recouped to where his function was prior to Philadelphia. We are still hopeful he will show improvements in the next months... But regardless it is known as heart failure. When he was born he had heart failure, obviously he was missing part of his heart, when I receive bills in the mail his clinical diagnosis is heart failure... But when a cardiologist flat out says heart failure it seems to hit home like it's the first time hearing it! Brody is in heart failure, again this is not new but having your cardiologist send you to be evaluated by a heart failure team is new! The past two years of our lives have been spent wrapped around hypoplastic left heart... Now even though B has HLHS, the palliative surgeries along with his new St. Jude's valve is as much as they can do. There are no more surgeries to help improve his heart.
What to do? We make the best decisions given the information at hand... We take him to the best Dr's and we love him and believe that everything will be ok! Everything will be ok!
At our last appointment when the words heart failure were used...more so than normal, Brody was started on a few new meds. Digioxin and another diuretic to help with his ventricular function.the combination of 9 different meds is know as a heart failure cocktail... I need a cocktail:)
In 5 weeks we will do another whole work up with echo's and ekg's to see if the meds are helping? To see if his function is improving? Regardless we will be referred to a heart failure team. We are still researching but it looks like we will take Brody to Stanford in California to be evaluated and treated by their heart failure team. In the heart world after the Fontan... The last of the 3 staged palliative surgeries, the time is known as the honeymoon phase. Everything is usually good for a time before the inevitable comes up.... Transplant. Unfortunately I dont think will get that phase. The unknown will eat you alive... So with that said I am really going to try and let it go! We can take Brody to the best team make the best decision and love him... The rest is in the hands of the man upstairs! When it comes time all we can do is pray.
As for now our plan is to enjoy each other! Enjoy life...enjoy my handsome man! My beautiful girl! And my amazing little man! Brody is here for a reason... And we intend to give him as many good times as we can!
God is good! Live for today! Kiss the ones you love... Tomorrow is never promised
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