Jun 14, 2010

Coughing again

Cough.  Gag.  Sputter. Choke.  Repeat.

Oxygen saturation levels in the low 80's (WITH oxygen on) during these episodes. 

And of course they all happen in the middle of the night.  That's been our past few days.  It's concerning because the doctor said that kids with leukodystrophy can have a slow, steady decline OR they can get one cold and not be able to recover.  So every cough makes my heart skip a beat.

Saturday night was quite rough.  Last night started out the same way so I posted a prayer request on F*cebook and immediately, he stopped choking and coughing and started sleeping.  He slept pretty peacefully from 11:30pm until almost 8:30 am with only a few little stirs and coughs.  Man do I love prayer warriors and a loving Father. 

Today we went to the Doc and were relieved to hear the crud is not developed into pneumonia.  It's all upper congestion only.  Whew!  That's awesome news. 

And honestly, everything that was done at the hospital for him, I can do for him.   They purposely sent me home with all the equipment to be able to do all this at home.  Breathing treatments, shaking vest, suction machine, oxygen, pulse oximeter.  Everything except IV meds and fluids.  The gave me all this to prevent having to go back to the hospital ... where he's more likely to pick up a secondary infection. 

I have to say I'm exhausted though. Sure I got some sleep last night, but I'm exhausted.  It's like I'm afraid to exhale. 

What does that mean?  I have a peace that passes understanding, which means peace beyond what I should have.  I really do.  But it doesn't mean that I feel peace 100% of the time.  I find myself (like when he's sick and choking) holding all the tension in my body.  I don't even realize it for a little while but then realize I have a horrible headache or tension neck ache.  It can be just 5 minutes of this before I feel it physically in my body. 

And the antidote is always the same.  Stop the worry.  Claim peace and a sound mind.  Rebuke fears.  And I'd love to say that works completely every time ... but the truth is ... it doesn't.    Maybe there are people who can sit and watch their kid choke, not able to breathe and feel no fear, only peace.  But I am not there yet. 

So that's why I'm so completely thankful for you.  All of you who are reading this, passing along Manny's prayer request, making comments, offering prayers and support.  YOU are helping hold up my very tired arms. 

I've never looked back and thought, "What have we done?"  I've never once regretted the decision to bring Manny into our home, our family, our lives, our hearts.  Never once have I considered any alternatives for his care.  He is my son.  And whether we get to love him for months or for a lifetime, loving Manny will always be one of the best decisions of our life. 


  1. Amen.

    I love your heart, Bethie. You really resemble your Father.

  2. You truly are an awesome woman... Love is certainly unconditional... and you love with your whole heart soul mind and strength.. Always know you are loved and we continue to pray for you and your dear family all the time..Sending your big Hugs... love and miss you...

    Sherrie and Family

  3. Bless your heart...and Manny's too! I will be lifting you both up in prayer!

    Love and blessings,