Wednesday, January 27, 2010

Two weeks ago

Fourteen days ago, my youngest son was hooked up to a machine that would empty his body of toxic blood and push it back inside him as mostly clean. He would be hooked up to monitors and have his blood pressure taken every 15 minutes. He would ride out stomach and leg cramps. Fight the want vs the need for sleep while people were carrying on conversations, televisions were playing and alarms were sounding. He didn't know any difference, but I did. It was his LAST dialysis session. :) Needless to say, my feet didn't touch the ground. When it was all over, I actually got a bit weepy. I going to miss some of our fabulous nurses. Yes, the docs make all the calls...but the nurses are the backbone of a hospital. I appreciate the care and concern they often showed my son...and at
That night, I tucked my "broken" son into his hospital crib one last time. A new day was coming in the morning. A new beginning and a new life, all in the form of a 5 inch kidney. Yeah...I didn't sleep for crap! And Matthew I think noticed my excitement and was "partying" it up from 2am til 4am. :) But I didn't mind in the slightest. We just giggled together. Then daddy arrived at a more respectable time in the morning at 7am after dropping the oldest son off at his parents' house. Soon we had a roomful of family including my parents and my aunt (the donor's friend).
Then...THEY came for him. I was so overwhelmed. I think I saw my mom cry. I grabbed my camera to take his last crappy kidney picture in the waiting room of the OR. Along the wall of windows leading to the elevator, I told him to soak up his last bit of sunshine since he would be stuck in the hospital for a couple of weeks. We went through all the consents and necessary talkings to with the transplant team. Then, they took him from my arms.
I've NEVER been happier to see someone take my son to surgery than I was at that moment.
Don't get me wrong, I was was a major surgery. But happiness won out over nerves. But with the emotional battle occurring on the inside, I think I was crying while smiling on the outside. I just remember hugging Ian tightly. We headed up to get the entourage and I texted family and friends (that were being sweethearts and spreading the word for us) that he was taken back.
We waited. Steve, our donor Marie's husband, and her son Matthew (great name huh?) ;) came over to visit while Marie was still in surgery. We all talked and prayed together. I felt very peaceful the whole time. So back upstairs to waiting. We received updates every hour and Steve would text with updates on Marie. Then, one of the reporters from Sharewyk (Share What You Know) tweeted some pictures out to us.
Marie's kidney had arrived and Matthew's had been taken out. His kidneys were compared to rotten meat the size of a wad of bubble gum (ewww). Here's the comparison picture of two unhealthy kidneys and one GREAT kidney!
I started getting all hyper at that point. Life was going into my son, taking away disease and death. I just hoped beyond all hope that it would "take". We needed liquid gold to squirt out of that thing! With every update after that, I would there pee? Any pee yet? Did you see pee? No one answered that they had. AAAAAAAHHHHHH!
Then the transplant surgeon came out. I RAN into his arms right smack dab in the middle of the OR waiting room. I just gave him a BIG hug and sobbed on his shoulder when he told me Matthew was peeing for the first time in 3 months, REAL pee for the first time in his lifetime. Yep, there was a nice wet spot right there on his scrubs...but he just got out of surgery...he'd change them anyway. ;) I thanked him profusely and set about calling everyone! I really just wanted to see my son. But before we could see him, we took the picture we'd been waiting to take....
So off to the PICU waiting room to wait until Matthew got his bed assignment after recovery. That was around 2:30pm. We didn't see him until 7pm. He was NOT tolerating his pain well at all and was freaking out about being alone with nurses he had never met. They finally called me back saying that usually they don't let parents see their child like this, but it was all they could do besides sedate and intubate again. The moment he touched him, his blood pressure dropped by 20 points. He was still in pain, but he was near someone familiar and was able to start breathing again. They were setting up to bag him before I got there. His sats had dropped to the 50's and his arms, legs and face were turning blue. He pinked up nicely again soon after our arrival. Mommy didn't lay down at all that night. Just had to comfort my son since his pain meds were cut when his respiration went down. So I know he was hurting.
They next few nights got worse before they got better. The worse night being Sunday night when Matthew's prograf (anti-rejection med) reached dangerously toxic levels of 42 (needed to be 10 - 12). He was hallucinating and frantic. He didn't recognize us, would scream, tear at his skin and stop breathing. Another "bag him" night. UGH! But as all things do, they get worse before they get better. And now..they are SO much better! He is peeing up a storm...seriously...we're drowning in urine here and couldn't be happier about! His labs are still finicky, but look awesome! Marie is recovering well and even came to visit us this past Monday when we were still in-patient and she was needed across the street for her check up. Matthew was so smiley his last weekend at the hospital.
With transplant, we have gained a functioning kidney, urine and an appetite. We have also gained new family members (Marie and Steve and their kids). Matthew has become a brand new person. He is still Matthew, but more. He is for lack of better word and at the risk of sounding corny... ALIVE! His smiles are broader, his laughter is richer, his energy is multiplied. And our hearts and lives are SO full now. We could not be happier with everything. Still in awe of our son. Still overwhelmed of what Marie has done for him...for us. Our boy is healthy!!!! Thank you God for allowing things to come in your time and in your way. I could not see a happier ending than what we have right now. Our boy is healthy. :)

Tuesday, January 12, 2010

Super 17!!!

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 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!!!

Friday, January 1, 2010


We have a DATE! January 14th!!! And I have no words anymore. Seriously...I think my brain slipped out of my ears or something. I can barely put this sentence together and it is requiring a LOT of backspacing due to my fingers and brain not communicating right now!
Just had to share!! I also posted on Matthew's caringbridge while my brain WAS working (for those brief five minutes).
OK, I'm going to Wal-Mart. I'm too excited/nervous/happy/hysterical to sit still.
I'll come back when my brain does!
WE HAVE A DATE!!!! New kidney here we come!! :)

Swidget 1.0