Sorry it's been so long since I updated - its hard to update on my blackberry and I have no other internet access at the hospital.

I am still at the hospital - a month today.

The plasmapheresis 'fixed' up my blood pressure problems so it did do something which is great, but my gut has not rebounded and they are considering the treatments a failure on that front. Instead of better my gut has gotten worse and I've been on morphine to manage the pain which isn't ideal.

Today I went to the OR and had a Gastro-Jujenal tube placed - it's a feeding tube that skips my stomach and feeds directly into my small intestines. The hope is that by skipping my stomach (which currently doesn't work at all) and the first part of my intestines, and using a very broken down formula that is easy to absorb, we can make use of whatever gut function I have left.

If it works I could be home this weekend.

Then we will wait to see how much my gut recovers. Long term it could recover almost totally or not at all, It's anyones guess.

The other part of the plan is to send me back to Mayo Clinic. This will be a few weeks or months from now likely, but the doc here thinks it's the best move now. My disease is so very rare that there's only a couple doctors that have experience with it - luckily they are all at the Mayo Clinic which is close - so they are working on arranging that.

So tonight I am quite sore from the surgery, but they have good painkillers that I'm happy to accept.

I feel confident that this is at least going to be a good step towards getting home. Long term is still fuzzy but I am hopeful ill be home this weekend with my babies.


  1. Keely,
    Can I ask if you've looked into a mito dx for yourself? Or is this something totally different?

    S and J Enterprises

  2. Wow. You are going through a lot. I hope this surgery does the trick for now and you can be home soon.

    Hang in there.



  3. Crossing my fingers you are home soon. Excited we will get to see you in MN, although not excited for the reason you are going.

    Much love from Northern MN!

    Love, Nena and Reese

    Nena and Reese

  4. Second Nena's sentiments - LOVE to meet!!!! SHOUT if I can help plan anything...anything, really!


  5. Going to log off of here and pray for you now. I hope the drugs keep the pain at bay, your digestive tract decides to get going again, and you are home in your own nest with your own baby birds very, very soon!!!


  6. Sharon, yes I have been thoroughlt worked up for mito and they are as certain as it is possible to be that I do not have it - in fact it was one of the 'big' mito docs that diagnosed me with Autoimmune Autonomic Ganglionopathy when I went to see him to rule out mito... Very fateful visit. In reality I just have terrible terrible luck.


  7. Praying the next blog I read will be posted from the comforts of your own bed.

    Cheryl and Bricen

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