Monday, October 18, 2010

Trying to keep upbeat

So..we are still here. It has been a Loooonnng week of basically not much progress towards pacemaker or biopsy because everyone wanted to moniter him. So now things are changing a bit. It does not look like a pacemaker is part of the plan right now since he has not had any of his big bradycardia events since coming here and they are hoping the medicine is doing its job. I am pretty sure we are not through with the episodes but since Jason and I are not wild about puttinghim throught the surgery for the pacemaker either than we may be ok with holding off to watch longer for problems. of course if this was an adult having these random sinus rythems they would be placing the pacemaker right away.. but it gets a bit more complicated with him being an infant and his past behavior under anesthesia intubated. So..we are back to square one. Then I found out today that the mito specialist that we had applied with is wanting to see sam for the consultation on wednesday and follow with the muscle biopsy at this hospital's sister hospital (CHOA at scottish rite) on thursday. I may have been unclear in my posts in the past... we don't know that sam has a mitochondrial disease.. it is just the theory they are looking into with further testing at the moment. So I guess we will be discharged from here soon and will probably stay at a ron mcd house during the week till ready to head home. I am missing home soo much and Jason has been really carrying the load back there between the girls and everything else. One day at a time. I just need to try and stay upbeat about everything and not get down. I am sure everything will fall into place.   

1 comment:

  1. Amanda,

    You have been so generous to share these words with everyone and I appreciate the time and effort that is involved.

    I would like to know if there is anything that I can do to help with your day-to-day arrangements. My mom lives in Buckhead and my sister is a bit closer to Scottish Rite and the other 3 hospitals there. If there is something that I can have them get for you or if you need a ride somewhere, please, please do not hesitate to let me know and I will get you all set up.

    I melt when I see the precious pics of Sam that you have shared and wish that I could give the tons of hugs and kisses that he so much deserves.

    We're saying our prayers for an enlightening week for you with love and peace.

    All the best,
    Lynn

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