Monday, December 14, 2009

The one I keep starting over

I've been trying to type this post for about two weeks now. And 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 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)! 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 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 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.


My Very Own Angel said...

I love you and Matthew so much. It's his time to get what he wants and what everyone else wants for him. I'm keeping his potential donor in my prayers and I hope the test come back showing one BIG FAT vien. I want you to play nurse only to a scrap of the knee when Matthew is out riding his bike. I'm praying for this Christmas miracle.

love you
Steph said...

I am praying so hard that Matthew (both of our dialysis Matthews) will have a kidney by Christmas! Yes, I know this isn't a realistic expectation but you know what? God comes through with miracles all the time! In fact, I'm praying both Matthews get a kidney in one day just because I think that would be awesome. I understand the getting teary-eyed. I get teary-eyed every time I think of our donor and his family. Our greatest miracle was the worst day of their lives. They lost their 19 year old baby. I think it is such a huge miracle that they looked beyond their grief and donated. Organ donation/transplant is such a miracle. I can't wait for you to see your next miracle! We have a few babys in the dialysisbabies group that should be getting kidneys soon. I can't wait! Now I'm crying.

Randi Jo :) said...

praying with you and talking to God a lot on behalf of Matthew - love you much and think of you so so so so so so often

j said...

i am keeping everything crossed. this has got to be the right match! what a wonderful thing to have another human being give you the gift of life.

Santino's family said...

Your family and donor are most definetly in my prayers. What a wonderful gift that would be for Christmas. Christmas is all about miracles and wonderful gifts! May you have a blessed Christmas and New Year!

Mommy Missionary said...

So I thought I was having a tough day - until I read about you guys. I read this tonight and thought I'd share it with you:
Psalm 121
I lift my eyes up to the hill-
where does my help come from?
My help comes from the Lord,
the Maker of heaven and earth.
He will not let your foot slip -
he who watches over you will not slumber;
indeed he who watches over Israel will neither slumber nor sleep.
The Lord watches over you -
the Lord is your shade at your right hand;
the sun will not harm you by day,
nor the moon by night.
The lord will keep you from all harm-
he will watch over your life;
the Lord will watch over your coming and going both now and forevermor.

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