Happy World Kidney Day!

Wow 4 months post transplant.  Good news...Things are good!
 We have been busy...Spending some serious time home after transplant and avoiding germs was our first task at home.  When January came it was time to head back to school.  This was exciting but scary at the same time.  Scary because this winter has been full of germs.  Off Mark went to school.   I think he made it a full 3 days before we ended up in the  hospital.  We were there for 4 or 5 days.  The morning he woke up with a fever I knew we were in trouble.  I packed a bag and headed to Boston.  For some reason I had hope that they were just going to send us home..not so much!  Mark's white blood cell count was dangerously low.  With the combination of the low blood cell count and the fever we were not going home.  After a couple days we went home with a new medication added to the list.  We would have to start a daily injection to keep the white blood cell count up.  When I say "we"  I should say Chris and Mark.  I'm way to much of a wimp to do his injection.  My job is to clean the site and hold Mark's hand.  Thank goodness for Chris!

CHB Jan 2012

We were released Friday night from the hospital!  Just in time for the big surprise we had coming for Mark on Saturday morning.  This was his post transplant gift...finally!!

New puppy!  Welcome to the family Opie.

And a couple more...

Mark seems to have taken to his new puppy pretty well.  I was a bit nervous about the commitment, but have no regrets now!

We have graduated to less follow up appointments now.  We started 2 times a week post transplant for about 8 weeks, then to once a week for 10 weeks and now we are at 2 times monthly as of this week!  hopefully by the end of May we will be on a once a month visit!  

His recovery is going well Mark has grown almost 5 centimeters and gained 3 kilos...The doctors say he looks great!

I feel like now it's just getting him back into the school routine.  I think Mark and I are still in a bit of a fog.  Life changed overnight for us and then was almost back to "normal" overnight as well.  Once the New Year was here Mark was back to school and I went from 2 to 4 days working again.  It may not sound like much but it is.  I don't think I ever really absorbed  all that had gone on, until after the dust had settled.  Now I am working on not feeling so lost, and maybe find myself again.

Couple photo's from the past couple months....

Kidney Awareness ornaments Mark made at Christmas

Grumpy Santa

Happy 2012!

Lots of new meds (including mine next to the knife block..haha)

Out to dinner 

Mark's name on the final beam going in the new CHB addition!

Today we celebrate.. World Kidney Day!

Showing his scar for World Kidney Day!  

Day 5

Today was another hard day for us...or maybe just me.  We did not have big plans other then eating, drinking and walking.  We had a few visitors this morning...then things took a turn.  Mark was having a rough day.  I guess I would say this is more emotionally then medically.  He becomes very grumpy at times.  We believe this is caused by the Ativan he is taking.  We are still unable to wean him from this due to his daily seizure medications still on the low side.  The level came back low again today.  The neurology team hopes for it to get to a safer level soon.  Until then god help us!  I think we will find a new little boy when we get his medications in order.
The kidney is doing well!  We still have good urine output.  Now it is a juggle to get medications balanced.  We were told  this would happen and the doses would change A LOT before we go home...and continue to change after that.  It is so important to keep the levels where they need to be, so we can keep that kidney for a long time :)
This afternoon I decided to take a break for a bit and head home...that's right home!  I needed to get out and clear my head so I could be fresh for Mark.  I went home to shower and do laundry.  Mark also wanted his baby and a game from home.  It was nice to be there for a few hours.  I also folded laundry, took out the trash and a couple other small projects.  Evy also came by with some food from Auntie Julie...Yummy!  I enjoyed my time.  This may sound weird but for some reason the smell of home recharges me...and you don't know it or miss it until you smell it again.  It just makes me feel whole again.
While I was gone Chris had a chance to talk with the surgeon.  He said we should expect the urine catheter to come out tomorrow.  Then next up will be back to the OR maybe on Friday to remove the chest catheter.  That procedure on Friday will make it all real for me...the dialysis catheter will be gone.  It's a moment I feel like I have been waiting for.  Also it is bitter sweet, we will miss the Nurses and friends at dialysis.  They have become a second family to us.  Change is good...and we will remain friends!

Happy moment for Mark!

Sleeping with Baby Fake...he made me bring her in when I went home!

One last thing...I was excited to hear Adele was in the city today for her procedure at Mass General.  I'm hoping she recovers quickly, and heads over to Children's for a visit with the Transplant kids!

Post Transplant Days 1,2 ,3 and 4

Thursday was a day of mostly bed rest.  We did have to leave the room for a quick scan.  Mark was able to slowly start water by mouth.  We started with half fl. oz. and moved up to one full one.  This equals out to be  30cc per fl oz.  Every bit he put in was taken away from the IV fluids.  All the fluids are counted very carefully to make sure it is all coming back out!  I think by the end of the day Thursday he had around 200-300cc by mouth.  He still did not eat anything.  He was able to stand Thursday night for a total of 5 minutes.  This was exciting day for us...we went to bed with big hopes for day 2!

First Kidney Scan! (The big white glowing dot on the screen is his new kidney)

Water Time!

Friday Day 2:

Friday we spent most of the day in bed.  He seems to have more strength as the day went on!  He was able to eat and drink.  All fluids were received by mouth!  This was exciting...The doctor increased his fluid amount because he was doing so well.  We went from 1200cc to 1500.  We were so happy and we knew Mark could do it!  He ate lots of pasta and sauce and drank his water.  It was nice to see that he was eating and drinking so well.  He was also moved to the chair for a change...I think he enjoyed that.

Sleepy

Saturday Day 3:

We woke up with big plans on Saturday for Mark.  This is the day he would drink more, go for walks and start to really get better.  Well that is not how it all worked out.  Saturday had to be the hardest day yet.  He did not want to walk at all...his appetite was just okay, and his fluid intake was awful.  I should also add that he was not the most pleasant child to be around as well!  

The doctor's had said it can be a roller coaster but I thought for sure Saturday would be great.  Saturday morning we could barley get him up for a weight.  That had a little bit to do with the Ativan he is on to control seizure activity.  When the doctors rounded we discussed trying to make a plan to lower the dose and get him up and moving.  We cannot lower that dose until we get his daily seizure meds to a safe level.  The level dropped because he was pulled off of these medicines for transplant.  Finally there was a plan in place to give him a boost in his daily meds by IV.  Then we would lower the Ativan slowly over a few days or a week or so.  He seemed so tired he just couldn't do a thing.  We were also faced with the issue of his blood pressure was rising along with some other levels.  It just seemed like everything was going against us.  We were reassured by the team that the expected this to happen.  They are currently adding medication to fix these issue.  They seem to not be worried at all about anything.  They are happy with the way things are going...so I guess we have no need to worry for now!  After a long day Saturday we headed to bed on the early side...that was a good choice we had a night of little sleep.

Sleep..Sleep..sleep!

Sunday Day 4:

Today has been another day of highs and lows.  Mark woke up a bit on the irritable side :(  After a long night of getting up on and off I was feeling a bit grumpy too!  Once he was up we tried to get some breakfast into him.  He didn't want his bagel (you know he's not feeling well if that happens) he told me the oatmeal was gross..even loaded with brown sugar!  I was ready to call it a day and we were only a couple hours into it.  Lucky for Chris and I some special visitors showed up and his mood changed a bit.  When the doctors did rounds this morning things seemed good.  The surgeon said his kidney is running great and he is doing great with his urine output.  The Renal doctor said everything was good as well...The main issues for now our his high blood pressure and low calcium.  They have added meds to work on this.  They are still seeming not so concerned.  We saw the highest blood pressure yet today.  This has landed him with 2 oral doses of medication and IV medication as well.  We also had a visit from the Neurologist.  She had reported that is level was still low.  The plan for today would be to give him another extra dose by mouth and check labs again tomorrow and Tuesday.  For now there would be no weening of the Ativan.  Another issue that will start to arises in the next couple days is keeping a very close eye on is Prograf level.  Prograf is one of his life long medications.  This is an anti-rejection medication.  One of his seizure medications can cause the Prograf level to lower.  The Prograf also has a risk of inducing seizure activity.  Oh boy I'm glad we are no the professionals.  

Later this afternoon we had some more visitors.  Mark was excited to see my Aunt and Uncle...They had lots of cool stuff for him.  He even did his first walk with them!  The first lap around the hall!!  He then needed another dose of Ativan

Finish of the first lap!

Medicine time.

All and all things are going good here.  It has been nice to have Chris staying every night with me.  We have a big week ahead of us.  We will be meeting with lots of different to people to help us learn all we need to learn.  I'm more stressed out taking a new kidney home then I ever was bringing an infant home.  There is a daily teaching list that is gone over everyday.  We have to learn lots of new things.  We are just starting to make the early steps to prepare for home...but I think it will at least be a week or so before we start talking about home!

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!