Tuesday, May 4, 2010

A Year Ago...Yet So Very Far Away...

So, I thought it would be interesting to look back over our Carepages and see where we were a year ago today.  Interesting entry - Mackenzie was still in the hospital from her FIRST stay (a week at our local hospital with what was thought to be RSV, then transferred to Sacramento's Sutter, where her enlarged heart was discovered, so after a week she was transferred to Stanford's Lucille Packard), and had just been moved to the infamous "3rd Floor" where the non-ICU patients go (sometimes called the "step-down" floor".  Jason was at the hospital by himself for the third day in a row because I had some kind of laryngitis/cough thing going on (gee, think it might have been some stress?) and we just found out we had gotten into the Ronald McDonald House for the first time.  Here is that entry:

Mackenzie got promoted to the Third Floor today at Stanford! That means she is out of the PICU and into the "transitional" area. Jason tells me her new room is very nice and she is in a real crib now - her first crib! She is still handling the oral medications quite well and she got her first bottle feed today in over three weeks and Jason said she sucked the 10 ml down in about 30 seconds and they had to take the bottle away from her to make her stop drinking (they don't want to overdo it). So, I think we may be able to start bottle feeding every three hours again now. This is great timing because we also found out we got into the Ronald McDonald House, which is right by the hospital and will allow us to be there for most of the feedings, even in the middle of the night. Cara Cupp, my college debate partner and roommate has been incredibly gracious to let us stay at her place since we got here and its been great - only 20 minutes to the hospital and she even got us Ling Lings at Costco this weekend! :) But, now that Mackenzie is eating on a regular schedule, being closer will make things much easier. I just hope I can get over my illness as I can't move into the Ronald McDonald House until I am better since they have some of the outpatient kids staying there as well as families.
Stanford is going to go ahead and complete all the necessary tests/evaluations needed for a transplant. This way, if that becomes necessary, Mackenzie can be immediately listed instead of having to wait while the tests/evaluations are completed. We are all hoping that it never is necessary, but it is much better to be prepared if it does happen. So far, Mackenzie's heart is looking pretty stable - not good, because its still big and pretty weak, but as long as its strong enough to do the job its supposed to do, she can get by with the big, weak heart. One of the cardiologists last week said her heart was just "too filled with love" and needed to get a little smaller. Hopefully the big love continues even as the heart gets smaller and stronger.
I miss seeing Mackenzie! I am drinking lots of OJ-Mango juice trying to get better...so fingers crossed I get a voice back and lose this occasional cough!

Obviously, Mackenzie's heart did not stay stable for too long...but, that is a story for another day.  A year ago...we had hope...and today, we have hope for a totally different reason!

Tomorrow the local newspaper is coming to do a story on Mackenzie.  I had written them during April hoping to get something in during Donate Life month, but the reporter wasn't available until tomorrow.  But, as the reporter said, "The need for donors will not go away in May."  Truer words were never spoken...I hope the story goes well and I can get my house looking decent tomorrow.  

1 comment:

  1. what a heartwarming post to know that it is now a whole year!

    I loved reading your posts. Thank you.

    Sandy Abrams


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