twenty four

24 - the number of times my son has been wheeled into the OR.
4-6 - the number of hours I will wait for this particularly surgery to be finished.
2 - the number of nights we "should" be staying
4 - the number of nights I packed to stay ;)
3:00 - when we turn his feed pump (filled with pedialyte) off tonight
7:15 - when they will begin to give my son his chance of "normal"

Does this get easier? Yes, it actually does.
Does this get hardier? Yes, it actually does.

I know how to calm my son down; I know what to expect from him and from the hospital staff. I know I have a say in the care and treatment of my son. I know I have the prayers and thoughts of my friends and family. They lift me up, inspiring me to go a little more past exhaustion and despair - to get to the other side where I find joy and peace.
I also know Matthew's anxiety will be terrible. I know he will shriek, throw things, try to hurt himself and continually ask "why" and telling me "no". I know he will be in pain, physically and mentally. I know he will not sleep because he will be frightened, and I know tomorrow night will be a long night of no sleep for me either. That's ok - that's what mommy's are for after all.
Knowing what is to be expected, does not mean I know everything that will happen. Complications, set backs, infections or any other number of issues that arise. Of those, I'm terrified. I don't know why I haven't been frightened by them before...I guess everything was so cut and dry, black and white back then. None of his surgeries have been "elective". Though this one is not "elective" either - it is to keep his kidney is better shape long term without the reflux and high pressure damaging it - it just seems more discretionary...like we have more a choice to do this one or not.
And because of that, I'm having a hard time with the risks. Before, if something went wrong (and it often did) it was always better than the alternative of not having the surgery done...which ultimately would have led to death. Now, it leads to a slow progression of kidney failure. But honestly...isn't that what everyone with a kidney transplant is experiencing? You just wait til your labs are bad enough to say you need to start making calls again and they stick you on a list? I don't know. I'm not scared for him per se... I think I'm actually scared for me!
I've never been scared for me! I'm always the nut case running up and down the halls laughing that we are "one more surgery closer to transplant". During transplant, the days leading up to it and the day of, NO butterflies! Just pure gratitude and peace! Now - I'm a bundle of nerves! Go figure! It only took 24 to get me there!

I wanted to include a song that some of my "kidney moms" lean on and rely on (since 90% of our kidney babies are boys) I just wanted to share it with you and ask for your prayers for a smooth surgery, a complication free recovery and a very short hospital stay. Please pray for Matthew's mind and soul - those are the scars that don't show, but run deepest and worry me the most. Thank you.
http://www.youtube.com/watch?v=3YK3JR-4Wpg&feature=related
http://www.youtube.com/watch?v=3YK3JR-4Wpg&feature=related

Too much

So I've been wondering...have I gone too far with my son? I look at him right this minute and just say that's absurd. He's SO happy, he's SO healthy! How can you doubt yourself Karen? Well, pretty easily actually. I am a mom, and mom's always wonder if they have done the best for their children in every regard. And at the moment...I'm wondering if I've done too much.

Yeah, after my impromptu nap last night at 8pm...I was wide awake by 11pm to watch Private Practice (the spin off of Grey's Anantomy). I'm a junkie to medical drama where adults act like teenagers getting mixed up in each other's love lives. It's a flaw I've learned to embrace. :) But on that episode there were parents of a tiny 25 weeker with lots of complications. The parents were holding out on hope that their child would get to live a normal life one day if they just kept fighting. The doctors didn't agree. They were suggesting medical assistance be stopped. In the end, it was. The parents finally got to hold their baby free of wires and just let him feel love.

Now no way can I compare my son's medical journey to one so severe as what this little guy was facing...but the similarities of what the doctors said kind of brought it home. I was told to terminate before he was even born and I resisted and fought for him. I was told by FAMILY and FRIENDS that said too much was being done...why don't I just stop once he was born. I've had to push the medical community, transplant team and home healthcare personnel so they would realize Matthew was a person. Not a number, a statistic or a nameless being. He was MY boy and I wanted the best for him.

I also wanted the best for me. I wanted Matthew here. I kept reasoning that if God wanted to take him...he'd do it anyway. During surgery, during sepsis or even while driving over ice to get him to hemodialysis. He's still here. I think he has a big purpose on this earth...I can't wait to find out what it is. But also, I wonder if my selfishness is what has kept him going. Did I "taint" his outcome due to my pushiness?

If I hadn't gone along with the interventions and fetal surgeries...Matthew wouldn't be here. There would be no "well, a miracle could happen". You can't grow a urethra if you don't have one. His lungs would not have formed, his heart would be misshapen and his body would have curled in over itself from lack of fluid and space to stretch out. Did I "play God" in advocating for my son? Did I push the medical community to keep him alive when according to their books, he should be dead? Who am I to put my son through 20 surgeries just so I can hear his giggles?

I'm his mom. I wouldn't change a thing. God gave us the tools of surgery, dialysis, and medicine to make things better. They work with God, because through Him all things are possible. My son is here. He shouldn't be. He's used up is "nine lives" and is on number 11 right now. God reaffirms that to me through people like Marie. Through donors everywhere, nurses, doctors, surgeons, pharmacists. God gave them their gifts for a reason. He gave me my son for a reason. I am grateful for both.

I am throwing away the receipt, no exchange necessary for Matthew. Thank you God for the perfect gift. :)

Pray for the Dowells

Here's a link to an article that features friends of mine that will be going through their transplant surgery starting this morning. I'm SO excited for them. Life is about to change drastically and for the better. We have already made a pact to meet up when both of our boys are healthy post transplant. Please pray for them to have a successfull surgery and a smooth recovery. Here's the article from their local newspaper in MT:
http://www.greatfallstribune.com/apps/pbcs.dll/article?AID=/20080916/LIFESTYLE/809160309

I can't wait for our turn (hopefully starting in about 18 months!) As some of you already know...we are returning to dialysis soon after our nice month long break. Last night we tried to do too cycles to clear out his catheter...and it wouldn't go. It seems we have a clog. :( This means another surgery to replace the catheter that is already in place. Hopefully when we go on Friday to Egleston they will just be able to do a transfer set replacement instead of doing a full surgery. Please pray for that too! I'll post on little man's website this weekend about the goings on.