June 8, 2009

Life Upended…

Posted in Uncategorized at 10:56 am by bk2nocal

As of now, M is going to be listed for a heart transplant the middle-to-end of this week.  As if this news is not enough of an upheaval, we have also realized that we will need to move in order to be within the 2-3 hour radius of the hospital in case she gets to go home in the meantime.  Hearts only last four to five hours after being removed from the donor, so M has to be able to get here to the hospital within three hours of them hearing there is a heart coming available.  So, we are going to give notice on our place (that we love) in Chico and I’m going to be temporarily moving in with my sister in Davis.  This will save us money on rent for the next month or so, when my husband will be gone working in Michigan (he works five weeks at a debate camp there) and I will most likely be staying mostly at the Ronald McDonald house while M recovers from her latest hospitalization.  We’ll put our stuff in storage and move only necessities, then reevaluatel where we are at the end of July – maybe we’ll leave our stuff in storage, maybe we’ll find a place in the Davis/Woodland area to move to. 

I really hate moving.  And it makes all the worse that we are moving from a place we really like a lot, but it has to be done.  This whole thing has really upended our lives.  Its difficult to figure out what to prioritize, where to find stability and how to plan for the future when you don’t really know what it holds.  But, I suppose that we will adapt and we will learn more and be able to plan better once we get used to this new state of being.

We are currently waiting for the doctors to round so we can hear where M stands this morning.  Will she be extubated?  Is her infection gone?  Can she be listed on the transplant list now?  Can she start getting her weaned off milirinone and back on her oral meds?  Will she be able to bottle feed again or will we have to deal with an NG tube for the time being?  Are her lungs working okay?  If she gets extubated, will she be able to stay extubated?

One of the other families who has a three-year-old in here in the hospital left a gift of a cute little pink, organic outfit for her yesterday.  So sweet and such a kind thing to do.  I need to go get a thank-you card for them…and maybe a picture frame because they love taking pictures. 

I’m not sure what life will be like here for five weeks while my husband is gone to Michigan.  I’m sure I will have lots of friends and family willing to come and visit me and the baby, but it will definitely be different. 

So much to think about…so much unknown.


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