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.