Sep 4, 2011

All So Confusing

I know too much to be oblivious or not concerned, but not enough to understand what is going on or the best course of action.  Last night, Manny had a semi-decent night sleep (that's new).  And he woke up with a mild (not high) fever.  He did desat but not as long as before (but they also did immediate therapies like deep suctioning and the metaneb which helped).  So everything is "borderline".

And if we go by the way he looks and by his pulse ox numbers, he's doing pretty well.  But if we go by his xray, he's very, very sick.  I found out last night that he actually has some atelectasis is BOTH lungs.  The radiology report doesn't report how much so that I don't know.  And in both lungs it's in the middle section.  But on the left lung, it's also in the lower lobe. 

From my research, with kids with neuromuscular disorders (like Manny has), the lower left lobe is a very dangerous place for it to be and most difficult to treat. So I think I should be appropriately concerned based on the xray, the duration of his symptoms.  Even if he didn't have a super bad night last night.

Meanwhile, I love my team of doctors.  They have helped Manny so many times before and always made the right call.  So do I go with their thoughts on this one?  OR ...

I recently registered with this group called Congenital Muscular Dystrophy International Registry (CMDIR). Their goal is to find as many kids with CMD as possible, gather data, devise a standard plan of care, etc.  I was in touch with them recently giving them more updated medical info on Manny and while I did, I thought it would be good to send them a paragraph about his story and a picture so they could put a face and personality to the data.  They loved it and asked if they could put it on their website.  Yes.

Then they forwarded it on to another group called CureCMD.  I've been talking via email for 2 days about scheduling a time to chat with "Anne" (didn't know who she was) about using his story on their site too.  So on a lark last night in the middle of the night, I asked her opinion of how to know if I go with the literature or the local docs on how to treat Manny.  (The treatment plans are RADICALLY different.)  She gave amazing advice.

Then I began to wonder how to get my docs to "hear" this point of view.  Meanwhile, I was emailing 2 moms with Merosin Kids to get their BTDT advice since both of their kids had atelectasis.  One suggested I call Dr. Anne R.  And I immediately recognized the name as the one I'd been emailing back and forth all night. 

Turns out ... it's the Same person.  Dr. Anne R is the chair and founder of CureCMD, she's a Doctor who is a specialist in CDM and is actually a mother who has a child with CMD.  And she says we are on the wrong treatment path for Manny. 

So now I sit here waiting for our doc to arrive.  I'm praying for wisdom on what to say and how to say it so I'll be heard.  I have a gut that the CMD people know what they're talking about and I should go with that ... but it would require a much more aggressive approach. 

Praying for wisdom and clarity.  And just wanting my kid to be well. 


  1. As always my dear Beth we are praying.Our Daddy will guide you am sure of that.
    Love you all Bruce and Snooks

  2. Praying for Manny and for you. God will give you the voice and the words you need. I just know it!

    My two littles have added Manny to their prayers.

    Blessings and hugs to you!


  3. Praying for you all...can you get to the doc that knows what they are doing with CMD...we ended up leaving Alaska for Jesse's treatments because no doc up here knows how to monitor him and his diagnosis. They just have not seen it we have a "team" here I call my just in case team...they would get Jesse ready to go to his "main team" which is located in Oregon. Thinking of you all!

  4. Beth, you are an amazing mother. Trust your gut. You have a great team, but no one knows Manny the way you do. Praying for wisdom and peace with what you and Dan decide is best for your son