Sunday, July 14, 2013

I have Fear but I Have to have Faith

Well were approaching little man's next appointment with the cardiologist! It's on Monday to be exact! I'm nervous & fearful. I have that awful feeling in the pit of my stomach that nothing has changed. That he still has an aneurysm. I'm fearful that it could be worse. I'm fearful that he may need long term medicine.

If your new to my blog well you are probably wondering what in the world I am talking about & what is wrong with my child. If that is the case my now 14 month old son was diagnosed with Kawasaki Disease on May 29th.  You can read our full story Here & Here

It was rough & then having to wait 2 weeks for a follow up appointment with the cardiologist wondering what they would see. Well they saw enlargement to his left coronary artery which they call an aneurysm. The Dr said it could resolve by his next appointment which is Monday!

So now you can understand my fear of what Monday will bring! I have fear for what kind of obstacles my son may face & what his future with this disease may bring. There is so much unknown about the long term affects of this disease (which drives me absolutely nuts).

I search the Internet for hours many nights trying to learn & understand more. I have support groups where we all talk & some children are doing just fine other's are losing hair, have joint pain, get sick a lot, some are still on long term med's (aspirin or other anti-coagulants, some steroids) So it's basically like the mystery disease. What will it do to my child? (I don't know)

So many Dr's have said it is very unlikely to have another "flare-up" yet I have read about more children having 2nd bouts with Kawasaki Disease since finding other parents in my situation (it is so    frustrating to not have answers).

Through all of this fear I have to remind myself to have Faith. Have Faith that he will be ok, that they will find the answers to this "Mystery Disease" I think at this point having Faith is the only thing getting me through all of this. I need to have Faith that his heart will be ok if not through it's own healing that it will be through medicine.

Will update everyone of what we find out from Monday's appointment.


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