Tuesday, December 29, 2009

Thank you...

for saving my son. For giving him part of you when I couldn't.

For helping me to NOT take any more pictures of leaking hemo catheters that cause surgeries and blood transfusions and emotional chaos. Thank you for giving my son the chance to live OFF of a machine. Thank you for letting the only fluid that will be leaking out of him be the prettiest yellow, instead of red. :)

Because of you - I get to keep him. Because of your heart, he'll have a working kidney. Because of your unselfishness, I get to be selfish and keep him around for many more Christmases to come. Because God placed you into our lives, into my aunt's life.

I'm speechless...I'm grateful...I'm touched. Thank you God. Thank you Marie.

Monday, December 28, 2009


I know - we make these every year and by Jan 15th...we conveniently "forget" about them. Well, this year instead of making broad and generalized things, I will be specific. No more, "Being healthier", no more "improve my patience", and no more "increase family time". Care to have a go with me and share yours? We could hold each other responsible. :)
And we're off! First resolution of the year - to play at least one game with BOTH of my boys each day. It can be Candyland, tag or balloon bump (made up game that me and William do). No excuses of being tired, having a migraine or too much to do today. My kids are worth more to me than folded laundry. I need to treat them as such. And unless it is raining, we will spend a certain amount of time outside every day. If it is too hot for Matthew and I'm worried about fluid loss, Matthew and me will hang out in the garage with the door open while we watch big brother ride his new scooter and me and Matthew play with sidewalk chalk or something together. Fresh air will be key to Matthew's health now. Gotta get in the habit of doing it...even if it feels like 120 degrees out there. Fresh air every day!
My second resolution, no yelling. I've often said I would be more patient - HA! This year has tested that more than any other...and when I get to the end of my rope and am hanging on by tattered/frayed threads...I yell. I yell for William to find his own toys himself. I yell at Ian for being 10 minutes later than he was supposed to be. I yell at Downey...well...ok, that one probably won't change if she still takes food out of my kids' hands! Downey OUTSIDE!!! ;) But I don't want to yell anymore. The "teacher" in me can sound very commanding and I know it freaks out the kids...so no more. This one will be hard!
Third resolution, no more "bad" language in the car. William has said his first "questionable" word...oops. :( So, mommy will do better. I know this is going to be hard...especially driving in and out of Atlanta. I mean come on - I-75 is FULL of idiots. BUT, I will control myself. Bring out the "substitutes". Yes, everyone knows what dangit means, but at least my three year old isn't saying dammit to his grandmother! :) I will behave, I will behave, I will behave. BUT, I'm allowing a relapse if I'm in the car alone. :P
My forth and final resolution is to finally put my health at the forefront. Once we are settled into our new routine of kidney transplant family, I will start taking care of myself so that I am around to take care of them for awhile. Yeah, I could say I'll eat right and exercise, but....BAHAHAHAHA! NOT giving up donuts and ice cream! SO, I'll keep up with my doctors. I actually GET a nephrologists for myself. Keep up with my electrolytes and creatinine (not like I do not have adequate experience with this!!) At my transplant evaluation, I was told my creatinine was 2.1. SO, I'm NOT worried at all. If Matthew had that - I'd jump for joy! :) (normal for ADULTS is .6 to 1.2, so I'm not high at all thankfully!) But, it is my goal to remain dialysis free until both of my children get married. No catheters will be taped up during the wedding pics! But to do this, I've got to stay on top of things. My vitamin D and iron are low - but easily fixed with supplements. No biggee. I'm fortunate that this was caught during stage 2 - where it is NEVER caught! (thank you Matthew) :) So, I have a good chance of staying ahead of things hopefully.
So, those are my specifics for this year. Nothing I shouldn't be able to handle. Here's hoping 2010 is a bright, happy and HEALTHY year for my little family and your's too. Happy New "kidney" Year!

Wednesday, December 16, 2009

Music for my soul

I need music. Music is a form of prayer to me. It speaks to my soul when I'm too close minded, frustrated, hurt or checked out to listen to others. I kind of checked out this afternoon. Just went to my bad place of hugging my knees to my chest as sobs came freely. It is therapeutic...but I'm a mother and can't do it often. Matthew was taking a nap after we got home and William was decorating a gum drop Christmas tree with my father in law. I had a minute to myself...and lost myself. Lost my will. It's back. I'm back. I'm ready to fight for my son...for his rights. To move things along and take things as they fall. Just writing down some of my favorite lyrics for days like these:

Little Wonders - Rob Thomas

let it go,
let it roll right off your shoulder
don't you know
the hardest part is over
let it in,
let your clarity define you
in the end
we will only just remember how it feels

There can be Miracles - Prince of Egypt

In this time of fear,
When prayer so often proved in vain
Hope seemed like the summer birds
Too swiftly flown away
Yet now I'm standing here
With heart so full I can't explain
Seeking faith and speaking words
I never thought I'd say

There can be miracles
When you believe
All hope is frail
Its hard to kill
Who knows what miracles
You can achieve
When you believe
Somehow you will
You will when you believe

The Prayer - Celine Dion

I pray you'll be our eyes, and watch us where we go.
And help us to be wise in times when we don't know
Let this be our prayer, when we lose our way
Lead us to the place, guide us with your grace
To a place where we'll be safe

And of course the song I always go to when I think of Matthew. The song I included on his section of the Christmas video I did on my boys last year. Oh how I love my gift from above. :)

Winter snow is falling down
Children laughing all around
Lights are turning on
Like a fairy tale come true
Sitting by the fire we made
You're the answer when I prayed
I would find someone
And baby I found you
All I want is to hold you forever
All I need is you more every day
You saved my heart
From being broken apart
You gave your love away
And I'm thankful every day
For the gift
Watching as you softly sleep
What I'd give if I could keep
Just this moment
If only time stood still
But the colors fade away
And the years will make us grey
But baby in my eyes
You'll still be beautiful
All I want is to hold you forever
All I need is you more every day
You saved my heart
From being broken apart
You gave your love away
And I'm thankful every day
For the gift

Monday, December 14, 2009

The one I keep starting over

I've been trying to type this post for about two weeks now. And MY...how the weeks have changed things around here! In the course of 11 days I've gone through fear, anger, relief, elation and doubt. Two Wednesday's ago (Dec 2nd) my son was rushed to emergency surgery when his hemo-catheter was pulled loose. Yes, the catheter that runs straight THROUGH his heart. And yes, the same catheter that was replaced on Nov 3rd the previous month. Needless to say, I didn't take this well...at all. Luckily, for Matthew's one year hemodialysis anniversary, Matthew's new catheter worked much better than the tiny one placed in his little 5.6 kilo body the previous year. I was still a mess that we had made it to his one year anniversary. Yet another milestone most babies under the age of one never see on hemo...Matthew has fought his way through. With congestive heart failure, fluid build up EVERYwhere, two bouts with sepsis, numerous clots and catheter issues and three surgeries for perma-catheter placements... I think he's pulled his load enough this year (without even touching all the stuff he went through before hemo!). Time to go after the transplant team! I called for a team meeting immediately to make sure everyone was on the same page.

Guess what? We got a pager. :) Guess what else? Our potential donor (remember St Marie - donor number 4) passed her kidney test screening (that no one else has so far)! OK...one more. Guess what again? Marie has been "rush ordered" for her next testing/screening. It will be THIS week. THIS Friday and Saturday!! Do you know what that means? We are almost DONE! That is the last part! We are fortunate to have a donor in GREAT health and she really takes care of herself and exercises regularly. The only possible "kink" could be the number of veins feeding her kidneys. We want ONE juicy big vein!! If there are more than that, the surgery is off. :( Nothing that can be controlled or manipulated...so fingers, toes and eyes are crossing in our family this week. We could actually KNOW if it will work out before Christmas! :)

I'm really not trying to let myself get too excited. It seems little Matthew has a knack for finding good fortunes only to be kicked in the kidney so to say. I don't know if we can take another hard knock. We will of course...but it won't be pretty. We are really hoping for a Christmas miracle. A true gift from God this year. He gave life to His Son, now I'm asking that he keep my son alive.

As we say in the kidney world, Matthew appears to be "fading" a little bit more each month. Yes, he is still happy and active, but the cost is more medicines and longer dialysis. We have been talking four days a week soon. I don't want it to come to that. I don't want my son plugged up to a machine more days than he is not. It gets to be the question of am I doing this for him or for me...

We do have an "out". If sweet Marie can not donate for some reason, Matthew gets listed for ALL matches. Remember that pager I mentioned. I'm honestly not expecting a page before Christmas since we are only listed for a perfect match...aka - his twin kidney! It happens, but it is rare. So placing him on the "anything" list, the docs think he will have a kidney by February. So January for a living donor, February for an angel donor.

This could be the end of our way of living...a way of living for over a year. I don't know any other way. It is both exciting and frightening. The trading of one set of problems for another. Trust me...I'd much rather have the transplant problems any day! :)I'm just nervous. I know what I'm doing now...pretty confident in my day and my knowledge. Soon, everything will change.

I'm getting ahead of myself and I'm rambling. I tend to do that when I'm nervous. I think this post has ended up being more for my mind than to keep my friends in "the loop". I do have a couple requests please:
Please keep our potential donor and her family in your prayers as she gears up for testing. Give them all peace, comfort and health during this time. It was SO much easier when I was the one to go under the knife for my son. That's what every mother should volunteer to do for their child. Take away the pain. But when someone else comes forward...it really leaves you speechless and grateful! (not to mention teary-eyed...often!) And please pray for Matthew. It is every mother's dream to see their son grow up healthy and strong. I don't want to bury a child. I can't imagine the pain. This surgery has the possibility of saving my family from that nightmare.

This surgery can give me the dreams of motherhood. A toddler that toddles without rickets holding him back, a child that has the option to be a picky eater because nothing is restricted, the freedom to stay home on rainy/cold days instead of fighting traffic to get to dialysis. I can be mommy more than nurse. Yes, I will still play nurse...I will always play nurse. I don't mind that. I just don't want him to play the "sick" boy anymore. I want a healthy boy for Christmas...please God...give me a healthy boy. Give him a kidney.

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