Transplant Day 11-2-11

Finally it was time for Transplant!!  We were wheeled down to pre-op at about 10am or so. Almost 20 hours after our arrival to CHB.  What a long 20 hours it had been.  When we arrived downstairs, Mark of course had a crew with him. Chris and I, my parents, Chris' Mom and Rachael.  This was it...finally it was go time.  Then we were told it would be another hour.  Part of me wanted to scream the other part was thinking whats another hour?  We kept busy...Papa did one thousand sticker pages with Mark.  Some of us enjoyed our smart phones.  We had a show from the clowns.  They were tipped of by another dialysis patient that Mark was in pre-op!
After lots of paperwork and coordinating it was time to go!  We had an issue with Mark's seizure medications right before transplant.  The issue was resolved quickly.  They decided to put Mark on an IV drug until post transplant.  We will then make a plan to work on his home regiment this week.

Playing while we wait.

Mark and Rach :)

Mark was sedated and headed off to the OR.  It was finally here!  Scary but great all at the same time.  We headed out to the family area and settled down for our 5 to 8 hour wait.  Every hour and a half the nurse will call in the OR for updates.  At about 1:30 the first report was back.  He had been put under and the incision was made.  We ordered lunch and waited some more.  Just before 3 the nurse called back in for an update.  She was happy to report he was being closed up and had already began making urine!!!  We couldn't believe it...we were convinced they may have had the wrong kid...It had only been 3 hours.  Just a short time after that the doctor came out to follow up with us.  He explained everything had went well and now we would have to wait a bit before we could see him.  At about 5:45 Chris and I headed back to see Mark.  They were just about ready to transport Mark back upstairs...Things were going well!

Post Transplant...Very Sleepy!

Mark had survived the big day...He was returned to us with 3 IV's, 1 Catheter (down below), 1 Central Line Catheter(dialysis cath), Drain Bag...and a approximately 6 to 7 inch incision area all bandaged up on his left side.  Underneath that incision contained 1 New Kidney!

Where Were You On 11-1-11?

Tuesday morning was a little different then most days in our house.  Mark had no school, Chris was working from home and I was trying to figure out what to do with my day!  Mark and I decided to take a trip to BJ's.  Off we went to Leominster.  On our way out Mark spotted my Aunt and ran up to get her.  We chatted outside the store for a few minutes.  That was when we got the "call".  I had always thought we would get the call at night.  I was a bit surprised...Of course crying and panicking at the same time!  My Aunt helped us put our goods in the car, and off we were to get Chris and head to Boston.
When I answered the phone the nurse had said "It's time"....and I remember saying "are you serious?"  then I proceeded to tell her I was at BJ's and she told me to get dressed and come in?!?  She thought I said I was in my PJ's...hehe!  So from Leominster to Littleton, we packed our bags and off to Boston we went.  We made it to Boston within an hour and half of the phone call.

All packed and ready for transplant.

When we arrived in Boston we headed straight up to the Dialysis clinic.  This would be Mark's last dialysis treatment for now!  The only way that would change is if he has a sleeping kidney post transplant...and/or he needs another transplant down the road.  For now we can say it was the last treatment!!

The end of the last treatment!

While Mark was having his last Dialysis treatment he had some labs done and I headed to admitting.

Once treatment was done we headed up to 10south to get settled and wait for the go...This was around 6 or so Tuesday night.  Then the waiting game began...we waited and waited and waited.  It was rumor that we would go to transplant late Tuesday night.  We had company to keep us busy for awhile...

Talking to Uncle Den

Sad attempt to capture us together!

We were with My parents, Chris' parents, Evy and Bobby.  After waiting for a bit we all started to fade.  Some headed home and the rest of us tried to go to bed.  We just had no idea when we would get the go!

Night Night

I was up almost all night. Every time the door opened we thought it was go time.  At about 3:30am I gave up and tried to sleep.  Around 5 or the Doctor came in and said it was still a go and he would see us in a few hours :)  That gave me hope again.  They told us from day one we could get to the hospital, they could send us home because it wasn't the best fit.  That is why I was stressing as time passed.  Although we ended up in transplant around noon time it was all for good reason to wait.  There was a transplant just before Mark.  The other kidney was going to one of his dialysis friends.  Two happy families in one day.  Of course feeling grateful for our donor and hoping that family understands the gift they gave us.  I'm truly hoping they are at peace with their decision...we will never be able to express how grateful we are feeling.

10 Months

There is one good thing about all of this waiting...We have had the opportunity to not miss out on much this Fall!  My fear...spending another Christmas at Children's.  We were told he could be listed up to 100 days.  100 days will be on November 9th....That is close to the start of the holidays.
Tonight we will celebrate 10 months at the Franco in Westford.  A family friend is hosting a fundraiser for Mark.  Mark just keeps on saying he is so excited to dance the night away!  It will be a nice distraction to see people and have a good time.
Let's just hope I will be blogging about transplant when we hit 11 months.  Please keep your fingers crossed!

Field Trip Day earlier this week!

Thinking About Christmas

Yes I said it...Thinking about Christmas.  There are lots of reasons why this wonderful holiday is crossing my mind.  I know.... Can we get past Halloween and Thanksgiving first?  This all stems from the dreaded Endocrinology appointment and the "Toy book".  First the toy book (as Mark likes to call it).  Mark came off the bus with a toy catalog from the bus driver.  He wouldn't stop looking at this magazine.  He kept on saying "Can I have this from Santa?"  So I gave him a pen and told him to start circling.  He did..happily!  I thought the entire book would be circled when he finished, but to my surprise it wasn't to bad.  His prize possession out of all the toys in the book...The Tea cart.  Yes The Tea Cart.  I wish I could find the book so I could take a picture of it, but I bet Mark is sleeping with it at the moment!  It is a red cart that comes with tea cups, a tea/coffee pot, dishes..ect.  He thinks it will be fantastic to be able to serve his Mom and Dad tea and coffee on Christmas morning...and many days to come!  The book came home almost 2 weeks ago and the Tea Cart is still the favorite!
Moving on to the appointment.  I was dragging my feet not wanting to go to this appointment last week.  The Renal doctor had suggested we go to the Endocrinologist just as a check in due to his labs being off.  When we arrived the first thing the doctor said to me was "Why are you here? The doctor that sent you did not send a referring note".  At that moment I wanted to scream!!!  So I explained to her the highs and lows in his lab results.  She looked at me and said "Well maybe if he had a kidney that worked this wouldn't be a problem".  At that moment I wanted to high-five her.  I controlled my self...I thought it my be a little wrong...but I was happy to hear that was her solution!  These levels we are looking at have always been a challenge for him, so it's no surprise to me that we would see bigger spikes in drops with his current state.  Moving on with the appointment she brought up another subject...Puberty.  I wanted to crawl under my chair..I know childish...I'm a mother I can had this!  As I stare at my innocent sweet little boy that really only wants a Tea Cart for Christmas, I'm not grasping the conversation.  Needless to say I will spare you the details, but the process has begun.  It just seems weird that Santa will bring a Tea Cart this year and replace the bubbles in the stocking with deodorant.  God who knew parenting could be so rough!