Saturday, December 15, 2007

On it drags...

Well, Faith was supposed to be home on Monday. Her clacium was too high so they were giving her some extra medication to bring the levels down. Now they are where they should be but her phosphate levels have also dropped. Guess what they may have to give her if the levels don't come up? Calcium...figure that one out!!

Anyhow, right now the levels aren't too low, they are just keeping an eye on them so they can catch it before it drops too low.

So, we were expecting to be able to bring her home sometime this weekend...but...

Somehow, she got an infection in her face...we noticed it on Thursday morning. It was a big lump, around the size of a dime that grew throughout the day and was very red. The dr put her on antibiotics that she was getting through her g-tube, but then Faith spiked a fever.

The dr decided that she should go on IV antibiotics instead and that started late Thursday night. When I went in on Friday the lump had come down quite noticeably and it was no longer red, she also did not have a fever anymore, so the IV antibiotic is working. is a 5 day prescription, so she won't be done the medication until Wednesday and then hopefully the iv line can come out. She has to stay in the hospital for another 24 hours after the line comes out and then we could look at taking her home, potentially...

I am getting so frustrated now, I feel like I am emotionally spent, we get our hopes up and then the day changes again. I know she is in a good spot right now and I know that she is going to come home well. That, ultimately, is what we all want. It just feels like it is dragging on and on now, if it is not one thing, it is another...frustrating.

We have now talked with the kids about the possibility of her not being home for Christmas. I know, we are still believing that she will be home by then, but it is really cutting it close and we have seen now, one time too many, the disappointment of having to break the news to the kids and our friends and family...time and time again, that her home date has been moved further...

So, thinking in realistic terms, knowing that there are still so many uncertainties, we have talked about celebrating Christmas whenever she comes is not the actual date that Christmas is, it is the reason that we celebrate. So, why not celebrate on New Year's or after? We want to make sure that it is a family celebration and that we are all happy about what we choose to do with it...learning to be fluid...(thanks Shannon!!).

We have definitely learned about that from this situation. Are we stuck to our traditions? or if we were sent somewhere...would we be able to go without feeling like we are missing something important? This is a great season to learn about this...we missed standing on the bridge to watch the lights go on in our park here, we missed having breakfast with Santa, we missed - we missed - we missed...and we are still surviving and we don't feel like we are incomplete without having done those things...if we miss Christmas day...we haven't really missed the 'reason' because that is all year long...

And we will just check out a movie or something different instead that day;-)

And, to find some other positive in the situation...we get to go to dinner with our church on Sunday night altogether, we get to go to Princess' school presentation, and we get to go to another Christmas dinner on Wednesday night with one of the kids programs...we don't have to worry about babysitting or one of us staying home with Faith...


  1. We continue to pray and wait with you, She is a faith and will have an abundance of faith herself when she is older.
    love always Cheryl

  2. How frustrating! I know you want her home so badly - I would, too. Especially because it means she is doing very well - well enough to leave behind the constant hospital care. Hopefully it will be soon.

    I agree with you, though - Christmas isn't about December 25th. We've had to celebrate some of our holidays on the wrong date due to Dave's work schedule, but it made no difference to us. It wouldn't have been Christmas without him home anyway!

    Again Ruth, I have to tell you, I think you've got a great attitude through this whole thing. You're keeping your heart and mind open and learning through it all. What value Faith has added to your life - because you've chosen to learn from her. You're a tremendous lady.