No answers ~ constant limbo

They say white noise is helpful when you’re trying to sleep but I had no idea how much “white noise” I would hear tonight when I came back to my room at the Ron Don.  I opened my door to find a huge unit attached to the ceiling blowing air into my room yet it still felt like it was 80ish deg. in the room. 

Well then the unit shut off and it felt like it was 90ish deg in the room.  As I sat there sweating talking to Steve my brain kicked in and said “dummy, go downstairs, it’s freezing down there!”  So I went down to the main area in the Ron Don and shortly thereafter an announcement came on asking all residents to meet in the main area of the house to address the AC or lack thereof the AC issue.   Well come to find out the circuit breaker cannot handle 50 independent AC units for the house so they asked for volunteers to endure the portable ac units in their room for the night and the rest of the people would be shuttled to a hotel.   I volunteered as the noise isn’t going to bother me as much as being hot would.  Hopefully it stays on all night. So far so good.

Today was the big meeting with Cardiology, CT surgery and CVICU regarding “what do we do with Porter”.  As it stands, no one continues to be excited about surgery for Porter which leaves us in the constant state of LIMBO and the unknown.   We are waiting to talk to the Chief Surgeon for more information as to 1~why the “heck” are we here and 2~ do we need to consider relocating either temporarily or permanently~ and if so there better be one hell of a good reason for it.   Steve and I know there are people out there with much worse situations than ours but this life of limbo is weighing heavy on us and is absolutely exhausting.  It’s one thing to know there is something wrong with your child and having a clear picture of what the course of action is to make it better and then there is Porter time~ status changing day by day, prognosis changing week to week,  no clear answer as to how to “fix Porter”.  It is extremely scary, frustrating and emotionally draining to live day in and day out in a hospital with amazing minds and specialties yet not one single person has the answer.   I read a mom’s blog from the cardiomyopathy foundation about her child at home saying she wasn’t feeling right and then collapsing, turning blue, seizing; the mom performed CPR while the dad called 911 and all the while I thought what if this happens to us, what will we do?  She wrote to say that she always feared that day would come knowing her daughter had Hypertrophic Cardiomyopathy and has always lived in fear before and now but cherishes every day she has with her daughter.  We cherish every day we have with sweet Porter and embrace every smile and silent giggle he gives.  We don’t know what tomorrow is going to bring but we thank God for the positivity’s of today and hope for some answers soon.

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