Brayden started feeling good enough to go to Johns incredible pizza about 430... he did great but then got extremely tired really fast..but kept pushing himself. He started having pains in his jaws, fever, vomiting, dissy and his heart is racing pretty fast.... not the best way to end his Birthday. Breaks my heart.....This heart stuff is driving me crazy... its scaring me...all the things they have told us to watch out for over the years are slowly happening ... he gets so tired so fast.... its very important his heart and lungs get enough rest even though his body wants to go go go...its hard to slow him down... we try to explain to him, his heart is failing...even though his body is not and remind him that he may not be tired but his heart and lungs are...they need rest. Some times he just doesnt want to hear it... He is laying next to me and I can just hear his heart pounding so loud and so hard... I can feel his heart beat on my bed. To be honest I just want to cry. My husband keeps reminding me he will be ok. We need to just breath. So Im just focusing on deep breaths to calm me down. Its so hard not to focus on the what could happen when you know the reality of this illness......we need to get these dang antibodies down faster so we can find him his perfect heart.... a new heart wont fix him...we are trading 1 illness for another. But it will make him feel better....which I cant wait for...i just want him to be a boy and not be in pain. Im so thankful his heart is beeping and pounding so hard even though it scares me.....its working its magic. Keeping him alive. Brayden is needing some birthday prayers...I do think we pushed him too hard this evening. We Thank you all for his birthday wishes. Really means a lot to us to know so many have thought about him today. He did enjoy his day even though he didnt feel great. ~mommy
Posted on: Tue, 02 Dec 2014 04:12:01 +0000
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