I would like to say something super
great that I haven't said before over the past month or so, but I got
nothin'. We are, you guessed it, still in Iowa City. However, as I
type this it is Monday and I was told that the goal is to discharge
us on Thursday. Of course, you also know that this ain't my first
rodeo and I refuse to get my hopes up and will only be excited when
they say, “Guess what? You're going home today!” Until then, we
wait.
Last week they did in fact remove
Blake's nephrostomy tube and we haven't had any major issues with
that. On Thursday, he got his port and that is such a nice thing to
have. Surgery was quick and no more pokes to my baby boy is a good
thing.
On Friday, the nurse taught me how to
catheterize Blake. I think I've told you before he will have to have
a catheter for life. However, it's not quite as bad as you think.
They made a small hole next to his belly button and created a channel
using his appendix. The little hole leads to his bladder. We just
have to stick a small tube in there and drain him. When we're done
we pull out the tube and throw it away. That's it. No tube in all
the time (except for bedtime). No leg bag or anything like that. In
the scheme of everything, it's not ideal, but I don't think it's a
huge deal.
Blake will have to go home on IV
nutrition, so they are working to get him the right mix of nutrition
right now. His glucose has been just a little high. Blake might
have to be hooked-up for 16 hours a day, which again, isn't ideal,
but at least we'd be at home! I love that word...HOME.
While I've been sitting in the hospital
and had all this time to think about things I've been thinking about
2014. A new year (even though it doesn't completely feel like it to
me since we haven't had Christmas) and a new slate. I saw on some
blogs I follow that these bloggers picked one word as their goal for
the new year. It made me think about what word I would choose.
After much thought, I chose the word
EMBRACE. Not the literal meaning exactly, but I want to embrace
life. All parts of my life. The good. And the bad. In December, I
saw how quickly life can change. I don't want to have regrets about
things. I want to enjoy my husband. My kids. My friends and
family. The people I meet. The experiences I have. The goals I want
to meet.
I saw this and thought it seemed
fitting. It's from the movie, “The Curious Case of Benjamin
Button,” which I haven't seen, but I liked this quote any way:
“For what it's worth: It's never too
late or, in my case, too early to be whoever you want to be. There's
no time limit, stop whenever you want. You can change or stay the
same, there are no rules to this thing. We can make the best or the
worst of it. I hope you make the best of it. And I hope you see
things that startle you. I hope you feel things you never felt
before. I hope you meet people with a different point of view. I hope
you live a life you're proud of. If you find that you're not, I hope
you have the strength to start all over again.”
So, what's your word for 2014? Joy,
healthy, opportunity, unpredictable, thrive, amaze, transform,
fearless... Whatever, it is, I hope it's the best year for you yet,
but that's just the way I see it.
Hi my name is Heather, I live in AZ and am friends with Teri Root who shared your story with me. Even though our stories are different there are a lot of similarities. We had a son named Bowen who was born 4/2011, he passed away from polycystic kidney disease. We also have a son named Blake. I just wanted to let you know I am praying for your family and praying that God is an anchor of hope in your storm. Praying for hope (hold on pain ends) know that there is no pain without a purpose. Praying for Blake to come home soon. Ephesians 5:5 www.bowenshope.com
ReplyDelete