We spoke a little about all that has happened. His brain surgery, his new leg issues and continued fever for no reasons. We also spoke about the reaction that he had again now with his new patch in his brain.
He also thinks seeing an allergist will be a good idea to figure out if Broc does have allergies to Nylon and other synthetics.
While Broc was having his echo he was a champ. He layed so still watching a show on the ipad. Once Pam was done with his echo Dr C came in and asked for more pictures. That is when a moms heart stops and you know the next thing he is going to tell you isn't good news.
The aortic insufficiency or leakage of his aortic valve has gone from moderate to severe stage. We spoke about all the things to look for but we also know that Broc has never presented us with any noticable changes where we can say we think he is having some heart issues lets have him checked out. He did show signs in 2010 after his cardiac cath and we knew something was wrong. That led to OHS for his aortic valve repair. That is the only time Brocs body has shown us a sign that something was wrong.
Dr C would like Broc to be seen by Dr Hoyer down at Riley for an evaluation. He would like the Drs down there to see what he sees to make sure everyone is on the same page. He also wants to make sure no intervention is needed at this time. He doesn't think so but would like to make sure.
Within the next 6 months we will make an appointment with Brocs cardiac team down at Riley. Due to ins we cannot make it any earlier than 3 months otherwise they may not cover the cost and we would have to pay out of pocket for everything.
We do know that once again he could stay in this stage for a couple years but will have to be monitored more closely and may also have more restrictions.
It looks like Broc certainly will have a full schedule at least the next 6 months.
We need to make sure that his body has accepted the patch in his brain.
He will be having another brain MRI to make sure every went well with his brain surgery.
We need to figure out why his right leg has stopped growing.
He also needs to have 2 small GI surgeries too.
Then lastly he will have his heart eval at Riley.
Thank you everyone for all your love ,prayers and support.
Seems so overwhelming when you lay it all out. But one appointment at a time until you're standing on the other side...
ReplyDeleteThanks Pipa, One Day at a time is the only way we can manage.
DeleteI’m so sorry to hear his cardiology update didn’t bring the best news. I’m happy to hear that he can get his evaluation up to 6 months, as that gives you guys time with the insurance as well as appears the doctors don’t see it as an emergency at this time. Having said that, I know it is still disappointing to get those results and have to make yet another appointment. I’m so sorry. Sending hugs!
ReplyDeleteTonya
Thank you my friend we appreciate all the hugs and support.
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