We're here!! We've made it! After 137 sessions of hemodialysis (not mentioning the 4 months of peritoneal dialysis) for a total of 361 hours, tomorrow we will be going for our LAST treatment. Only three more hours of my son plugged up to the dialyzier! I think I'm still in denial that this is happening!! I just can't wrap my mind around it.
After over thirteen months of going down to the hospital to receive life sustaining treatments, we will be going down to receive a life SAVING surgery and drive away with excellent kidney function! I mean I am happy if his creatinine is under 7.0! (my standards have gone WAY down!!!) I can't even imagine what it will be like if it is under 1.0 and NORMAL!! Oh Lord...he's going to have SO much energy. Maybe I should be a little more scared about this than I am...
But I just can't "be scared". I can only be excited. I'm all jumpy and jittery and just going everywhere at once. I'm surprised my skin has just come off from the sheer energy that is coarsing through my body at the this moment...but then I'd have to clean it up...and I really don't have time for that. ;) Is is weird that I'm not scared? Many of my friends and family ask that when they call or email. Are you scared. No, just really excited!
Yes, I am anxious...it is surgery and the longest one he's been in. His port placement, pd catheter extraction and g-tube placement only took 3.5 hours. To take out two old kidneys, add a new (slightly used) kidney and remove the hemo perma-cath will take approximately 6 hrs. EEEEK! I'm just anxious to hear the surgeon come out and say "it looks great and we've got liquid gold right at this moment!". I think I'll cry.
I've never cried at a surgery, before or after. Is THAT weird? I've always just gone on automatic pilot. Matthew needs these things done and they will be done so we can get to the BIG surgery. I've always had my eyes on the big surgery, but never really thought about the BIG day arriving. It feels like it is happening SO soon yet SO slow! I'm trying to savor these last 24 hours with both of my boys. (I miss William SO much when I'm at the hospital...and he doesn't take it too well either). But I'm also saying, come on, come on, come ON!!! :)
This is what I have been fighting for since I was told at 16 weeks gestation to give up, throw in the towel, you are young and can have another one soon. I could never replace Matthew (only his kidneys). I'm thrilled to shove it in everyone's face that ever doubted my boy! HA! We MADE IT!!! HE made it!! He kicked dialysis BUTT! :) (Ok, so not very mature, but eh...I don't care at the moment) :P
I'm NOT looking forward to the pain, the blood pressure issues, the diarrhea...ugh! But the fact that Matthew will be HERE. He will have the strength to walk! He will be able to learn how to take food by mouth! He will grow up to be a man that can overcome any obstacle, because this baby has been a fighter all along. I am so proud of him. :) So grateful for all he has given me. So thankful to my support team of friends and family that have gathered around us. And I can not form words to express my feelings for Marie.
Is your green clean? Wear it to honor Matthew, Marie and ALL the organ donors and recipients (present, past and future). New kidney on Thursday! New journey, new life. Second chances ROCK!!!
11 comments:
I don't think it's weird at all the you are so excited. It is a miracle in itself that Matthew has made it this far. You both have overcome so many obstacles and I don't think God would have allowed him to make it this far to take him away from you now! I will be praying for you both and can't wait to stop back by your blog and see how amazing he is doing with his new kidney!
Praying all goes well! He sure is a cutie!
I just wanted to say hi.
My kids are regulars at Egleston too. We are frequent fliers to cardiology, gastroenterology, neurology, hematology, and pulmonology.
My kids have a genetic disorder and they are currently being tested for a mitochondrial disorder too.
I bet we have run into each other a ton and have had kids inpatient at the same time.
PS. Matthew is an awesome name.
email me at turtlesandcats@gmail.com if you want. :)
I am SOO thrilled for you guys! And you will be in my thoughts during the surgery!
Hello. We will be downtown going to the boat show on Saturday. Will it be okay if I come by to visit with you for a few minutes? If you need anything, please let me know.
Denise
YAY! I am so excited for you guys! I can't wait to hear that Matthew has a creatinine of 0.4 or lower! You have peace, yay! I pray for peace for you tomorrow and I pray for everything to go well tomorrow for both Matthew and Marie. We will be wearing our green tomorrow! I am so happy for you guys. Just when it feels like the day will never come--here it is! YAY! Praise God!
I am so, so happy that Matthew's day is nearly arrived.
I pray that is all goes smoothly for Matthew and Marie.
I know what it feels like to not have the words to express thanks to a donor (well, 2 if you want to get technical) but they will come. And what I have learned from my kid's donors is that all they want, all they ever wanted is for Gage and Quinn to have a better life. To life with more energy and good health, to have opportunities for school dances and relationships, to have a chance to live off of a machine.
The only way I have to repay them is to help Gage and Quinn live their best life; a full life.
Enjoy this time. The time of new beginnings for all of you.
And call me if you need ANYTHING! (it's an off week for labs - Quinn has been move to every other week clinic!) but we're close to the hospital. I'll swing by with some fresh fruit or something! cell 404-731-8931 -
I'll be praying for Dr. Kirk too!
Julia
www.kidneysandeyes.com
I am so so so excited for you guys. So proud to know you personally as a mother. I wish you all were back in Wilmington, so I could give you a hug and a squeeze. We all will be thinking of you guys back home, and cannot wait to hear that everything went well!
Oh I cant wait for this to happen to you guys! I know slightly what you are feeling but we arent as close. Please let us know what happens as soon as you know...
I just went to your caring bridge page for an update! I'm so happy that he's doing well! I hope his first bath is wonderful and that you end up soaked from all the splashing!
Karen,
That is really wonderful news to hear! I've been out of the loop for three months now and I'm sure I've missed a lot, but I am so very happy for you guys! You have been through so much since Matthew was born (and before!)I pray for a successful surgery and relief for you all. I really miss you!
Love,
Jenn
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