May 14, 2010

Decided to share ... Warning: not a happy topic

As you know, I was deciding how much of Manny's story I should tell. 

I know people who share nothing and I can completely understand that point of view. Anonymity.  Confidentiality.  Good things. 

I also know people who share everything.  Every emotion, detail shown.  I also understand that point of view.  There's power in telling the story and getting support. 

I realized the issue is that I am not sure what part of the story is "his" and what part is "mine".

Like today, he's in the hospital.  We were admitted about 2pm today.  So HIS story is what is going on with him.  But MY story is watching my baby go through all this.  And as I sit here with the whir of the machines and him happily cooing (for now), I must tell some of the story.  I feel burdened by it. 

I feel that if I share SOME of the story, I don't share the burden alone. So here goes PART of the story. 

Manny has some pretty severe special needs.  The most profound symptom is hypotonia.  His would be labeled as "severe".  (Though he's made TONS of strides since being with us for the past 7 weeks.) 

As a result of that, even the swallowing muscles are affected.  So he's on the gtube for all his feedings.  He can take nothing orally.  We hope that won't always be the case ... but we'll need to have a speech pathologist do some tests and then go from there. 

But he also does what's called "silent aspiration".  If you or I aspirated, we'd sputter, cough, act completely crazy.  But a child with the possible condition he has aspirates, it's usually "silent" and the only sign is that he will spike a fever, get congested and then pneumonia. 

Which brings us to today.  He has double pneumonia.  2 days ago it was just the fever and cough/congestion but today it's settled in both lungs. 

The real concern though is what this means.  One time of doing this is no big deal.  (Well, sorta.)  But he possibly has the condition where this is the sign of things to come.  That this would happen more and more frequently until they can't help him recover. 

The doctor actually just talked to me about if I wanted him intubated if he needs it and suggested that we not, but instead sign a DNR.  The words sucked the life right out of the room.  He didn't TELL me to do that, he just said that IF he has the condition we're suspecting, that would be his recommendation. 

I told him we'd be praying hard and that we'd cross that bridge when we get to it. 

Tears roll down my face as I even just type that.  It's unthinkable.  It's unbearable.  It's NOT OK with me that this is the way Manny's story goes.  And I know that I cannot bear this alone.  I cannot bear the responsibility of all the prayers alone.  And I know that if I don't ask for all the help I can get and things go bad, I'll always question if I did the right thing. 

So ... while I'm still not sharing everything at this time, I needed to share this.  Manny needs a creative miracle.  He needs MAJOR prayers.  Would you please join us in fighting for him?  Would you storm heaven on his behalf?? 

Love, Beth


  1. love you and Manny. We're praying.

  2. You didn't have to ask..I'm on Manny's team. Holding you both in my heart. Penny

  3. Praying for you and for sweet Manny! Tough stuff... I would need support too! You should not waste your energy worrying about feeling the need to ask for it! Enjoy a cuddle and try to live in the moment if you possibly can. Hugs!!

  4. I am with you and Manny every step of the way, wherever he is leading us. Tell him all about us, Beth. Tell him how much we love you both!

  5. hugs and prayers and lots of love headed your way.

  6. Prayers from Iowa...goes without saying that whomever you love, I do. XOXOXO

  7. Praying here. Love you, love Manny.

  8. Beth, you don't have to ask. We are praying here in Texas.