Well I am home, so that's a start.

I was officially discharged on Monday, and it is WONDERFUL to be at home with my boys.

I'm trying hard not to be discouraged but my being home is not a reflection of my being 'better' but rather of there being nothing more they can do for me in the hospital.

I am getting fed through the Jtube which is great as it's nourishment. But I'm in alot of pain and needing morphine pretty much around the clock witch sucks.

We are essentially pumping food into a gut that does not work, and that causes pain. But with the morphine we're able to do it, so we will continue to do so for the time being.

I am now in waiting mode - we are waiting for approval to refer me to the Mayo Clinic - they will hopefully be able to get a handle on how to manage my gut issues better.

So that's about it - just sort of coasting at this point. Hoping things improve. preparing myself in case they dont (which will mean readmission, starting back on TPN, and up to 3 more weeks in the hospital until they can sort out the home TPN services - not to mention all the risks and worries that go with being on TPN longer term... its great short term, its scary long term).

The boys are doing fantastic which is great - this morning they decided to have a 'dance party' before school... when they decide to have a dance party Brandon will turn his piano on, and turn a song on (its a fancy electric keyboard with all the preset songs and beats in it), and then the 2 of them will dance like maniacs on the carpet for 10 minutes - we're talking full out somersaulting, jumping, spinning, twisting, dancing... they get right into it, and it's hilarious to watch! So today started with a dance party - hard to be grumpy when you start your day out like that :)

Thanks for checking in,



  1. Glad you are home -change of scenery is good for mind and body...especially to music AND dancing!


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