Thursday, December 18, 2014

And Again...

It's been one crazy, messed up week!  Today was just about trying to survive.

I slept only 2.5 hours last night and had a full day of work today, in fact, I just got home!

So, life is interesting.

Well, enough small talk...where to start?

First off, it's been interesting to watch Shelbie and Sam today.  Shelbie has been very protective of Sam.  At our appointment yesterday, as soon as the doctor told us Sam was having mini strokes, Shelbie started crying.  The doctor said, "Why are you boobing?" It sounded kind of harsh at first but it really wasn't.  He was very gentle.  Shelbie told him that is was just too hard to hear that something is wrong with her brother.

Today, twice while they were out, people asked Sam about his heart.  Shelbie jumped in and said that nothing was wrong.  While that isn't entirely true, at all, she did it for Sam.  He has been in a very sad place for about the past 6 months.  Since getting pneumonia, it's gotten even worse.  He has no desire to live.  He doesn't see the point to anything anymore.  Shelbie just didn't want to get into a big discussion about it in front of him because he gets so upset.

Anyways, on to the report about Shelbie from yesterday's appointment.  Again, I was floored at what he discovered, or thinks he discovered.  As if one major problem with one kid isn't enough!

I've mentioned before how Shelbie stops breathing when she sleeps.  I just wanted this doctor to check her asthma and make sure everything is in check.  Well, we brought up the breathing issues and he began to ask a string of questions which seemed completely random and unrelated.  He asked if she gets hives, swelling, edema in her hands and feet...she answered yes to all of these.  These symptoms, in  conjunction with her throat closing up actually amounts to a rare, autosomal genetic disease called C-1 Esterase and C4A Esterase Deficiencies.

He said that what she is describing when she stops breathing is laryngospasms.  The muscles and nerves around her larynx and vocal chords clamp down and she wakes up without being able to take a breath.  It's literally impossible for her to breathe.  She stumbles out of bed and tries to get me or Sam to wake up but she usually collapses before we get to her and by then, she is breathing again but terrified.  

Apparently, all these symptoms go hand in hand and has something to do with a protein deficiency at a cellular level.  I have yet to really do some serious reading about this so don't quote me on this.

We will draw a ton of blood and test for this disease.  I would like to say I doubt she has it but after this week, anything can happen.  There is no treatment and if can sometimes result in sudden death because if the muscles don't stop spasoming and relax, the person essentially suffocates.

Next week, we will go back to the hospital about an hour and half from here and run the same pulmonary function tests that Sam had a few weeks ago.  I'm really hoping we don't have to add this disease to the growing list of problems!  I just hope it's an asthma flare and medications will calm things down.

I can't even put words to this week!  It's the craziest thing I've ever imagined.  Actually, who could imagine a week like this?  I have been completely thrown off my game.

Tomorrow, Shelbie goes in the hospital for her transfusion. I was thinking last Sunday how this will be our last hospital stay for 2014!  Boy was I wrong! Between now and Christmas alone, we will be at one hospital or another every...single...day!   From the day after Christmas til New Years...looks like more of the same.  I have no idea what happened.

Today, I have bounced between not okay and numb.  And then, every so often, I feel panicked about Spencer.  Just pure, unadulterated anxiety!   He has not one clue a thing that has taken place since he left.  When he gets home, he is going to be totally dumbfounded at what his siblings have been through!  I'm so grateful that he is where he is and that angels are lifting him and blessing him daily.  He has never been healthier as he has on his mission.  It's nothing short of miracle.

Maybe I'm wrong in not telling him what we deal with on a daily basis.  When things get really bad, I will sometimes ask him to say a few extra prayers for some 'tough things' that have come up but that's as much detail as I give him!  He just needs to focus on being happy and serving, not worrying about advancing poor health at home.

I sure love my kids.  They are going through some terrifying things but today, you wouldn't know it.  They are trying so hard to be cheerful.

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