Line Infection

To top off a long busy week...we had a trip to the ER last night.  Yesterday started off as a great day.  Mark had Special Olympics!  That was a lot of fun...He won two medals.  A gold and bronze.  His events were the Ball Toss and 50 Meter Dash!  He was in his glory to be with his friends and at Special Olympics.  Typically we go to dialysis on Friday.  Mark's doctors were kind enough to allow a schedule change this week for Mark to attend this special day!

The Athlete

The Crowd

The Events

Best Buds..waiting pre-games!

The Bronze

The Gold

After Special Olympics Mark started to go down hill.  He just seemed very tired and hot from being outside all morning.  He fell asleep in a restaurant!  Anyone who knows Mark...you know he would never miss a meal..especially one at a restaurant.  So we headed home and he took a nap.  We also were both up early...between the excitement of The Royal Wedding (yes Mark and I watched...and enjoyed every moment) and Special Olympics it was an early day for us.
By the time Chris was home from work he was not well...Suddenly burning up!  I know what that means...a trip to Boston!  So we put the call in and I packed a bag.  I wanted to bring a bad just in case....I knew most likely they would culture the line and give him IV antibiotics.  The problem was it was already late and we had to be back in the city bright and early for dialysis.  We figured we will bring a bag and if we are in the ER late, we would stay in the hotel next door.  Besides with the gases prices it maybe worth the stay...haha :)  Lucky for us everything went well at the ER...we decided to make the drive home and turn around and go back in the morning!
Unfortunately Mark's culture came back today positive.  This can be scary and very dangerous if not watched closely.  Mark has already had his first dose of antibiotics and will be do again on Monday.  As well as an oral antibiotic everyday.  If he shows any changes at all...Fever..acting different..any thing out of the normal he will be admitted.  I guess I will be like hawk eyes for now!

4 Months

One Month ago...We were having our donors tested.  Today...We now know the results and are excited with moving forward!  This last month has been such a struggle with Mark's catheter.  We have good days and bad days...treatments lasting closer to 4 hours.  We are not getting home until much later! Mark and I are both burnt out and ready to move forward!  This has also been a busy week for us...Chris' big 30th birthday!!  Mark's urology appointment...now we are just waiting on one quick appointment and Mark will be cleared!!  Also my dear friend Evy's 30th!!  I love and hate a busy week.  It keeps me busy but I will be burnt out for Easter this weekend.  Tonight We will be having a 30th celebration for Chris and Evy!  So pathetic it took all my might to throw a 30th party....but they both deserve it!!  It's great that they share a birthday week! We will relax enjoy the weekend celebrating everything...The birthdays, Easter, and most of all the road to Mark's health...He will be a happy healthy little boy again before we know it!

Urology

I need to back track a little bit.  I was unable to blog on Wednesday.  We had a busy day.  Mark and I arrived to Children's right around 7am.  We enjoyed some oatmeal together (this is new for Mark..he claims it's his favorite) and headed right up to dialysis.

We had many interruptions during treatment.  Everyday seems to be different.  He does require a nurse to sit by his bed for all of treatment.  Every time they try to walk away his machine will alarm and stop!  Day after day it makes me excited that we are getting closer to transplant.  I always find myself looking ahead to the future.  I feel like it is hard to live in the moment.  I just constantly think about what's the next hurtle.  I want transplant to come..but I can't stop stressing about it.  I have little to no focus these days.  All this stressing is the Mother in me...or should I say the parent in me.  I know things will be great for Mark once he recovers.  It's just the long road I fear.  Also the thought of him being in surgery for hours.  The longest he has been in the OR has been about 4 hours or so.  If you have ever experienced this as a parent...It is the worse feeling in the world.  You have no control.

After our long dialysis we headed downstairs to get some lunch.  We had a little time to kill before our Urology appointment so we went to the hospital playground for a bit.  We arrived at our appointment about 30 minutes early.  The women at the front desk suggested we go get lunch or go to the patient entertainment center.  I told her we did that already!  She said okay they will be with you shortly.  She failed to mention they were running behind...almost 2 hours!!!!!!!!  As you can imagine I was feeling a bit frustrated when they finally took us.  Mark was having a full Urodynamic study.  You can google that if you would like...I don't want to be to graphic, but there were catheters going in some not so comfortable places.  Mark was not a happy camper.  After the study they said everything looked good.  They also failed to mention the Renal Urologist was not there but he would be reading the study at a later time.  I was a little pissed about that.  The reason we are there is for his kidney's and to be cleared for transplant.  I want to know if the expect to take out his native kidneys or not.  I am hoping for some answers before the weekend.

On an exciting note, we received a phone call from Make A Wish Foundation while we were at our appointment.  Mark was referred to the program by the hospital.  He does qualify for a Wish!!  They are setting up a wish team to come out and meet us soon.

Also our potential donor has been working hard on trying to get cleared for transplant as well.  We hope to hear soon how the appointment with the donors primary care went this week!!

Happy 30th Chris!

Happy 30th Birthday to Chris!  Tuesday was Chris' birthday.  We had a little celebration for him.  Mark was so excited all day...He couldn't wait for Chris to get home.  When we were in the grocery store picking up some birthday stuff, Mark was busy telling everyone that it was his Dad's birthday.  Our 10 minute trip into the store took about 35 minutes...NO JOKE!  Mark will talk to anyone and everyone.  I try to explain to him that some people prefer not to talk...He doesn't care he will just try to break them.
After we celebrated on Tuesday night Mark and I had to go right to bed.  We had to be at Children's by 7am on Wednesday.

My Birthday Creation..

Mark Loves Birthdays!

Marathon Monday

Today is a big day in the city...Marathon Monday!  The Boston Marathon and The Red Sox game.  This means it is busy in the city, with lots of street closures.  The traffic coming in was not to bad...the traffic going home...well let's just say I am scared!!  We will be leaving here just in time for the Red Sox game to end.  The funny thing is it's a hospital holiday and it's a ghost town here!  I'm hoping Mark's treatment goes with little to no issues so that we can get right out of here.
We had an eventful weekend...it flew by!  Saturday Mark and I went to see Barney Live! Mark was so happy to go see Barney.  It is not often that he goes on tour, so we have to get tickets when he is around.  I was not able to take picture...but boy I wish I did.  Sunday was a nice relaxed day for me!!  I got to go shopping with Rachael for a couple hours.  We came home to a yummy dinner....it felt like a summer day!  We also dyed Easter eggs with Mark when we got home...That is always a fast but fun thing to do.  Mark has no patients to wait for the eggs to get to a bright color.  He then likes to start mixing the colors as well....It makes me crazy, but I do understand it is an activity for him and I can't be so orderly!

Chris with dinner!

6.5 pounds...he was a big guy!

Easter Eggs :

I started to blog while we were at Children's today.  I had to stop to lay with Mark.  His catheter was acting up today.  With several interruptions it made the time crawl by.  I had to lay in bed with him and the nurse had to sit next to him the whole time.  On a good note the ride home was a breeze...that was a great way to end a long afternoon.  Mark is on school break this week, I was hoping to go to the park tomorrow...but i hear it may rain.  I hope not!  We will be making a cake for Chris' 30th tomorrow!!!  

Normalcy

Some normalcy for Mark is important...Here are a few things he loves:

Going to the park

He has a love for Forge Beach

Projects

He loves his music also...His favorite songs include the following:

Toes- Zac Brown Band

Party In The USA- Miley Cyrus

Chicken Fried- Zac Brown Band

Dance With Me- Orleans

Need You Now- Lady Antebellum

This is what he request over and over again on the ipod!

These are all things that Mark loves....This recent warm weather has been very nice for us to go to the park, get ice cream and be outside!  Going to school and to have a normal routine feels good to Mark.  He has to know what to expect at all times.  Where he's going..what he's doing and who will be there...and he still will ask a million questions!

Donor

Exciting News...We have a donor!!!!!!!  Chris and I received a phone call last Friday night with the news.  The phone call came in as I was about to head out for a ladies night.  The nurse was happy to make the call so we didn't have to wait a whole weekend.  She said " I have really great news..but also you will be put in a hard position."  All the donors came back a great match...not one better then the other!  At that moment I understood what she meant about that hard position we would be put in.  Immediately my mind started to race..How do we pick??  After chatting with the nurse for a bit she helped guide me on how to make the decision.  She did say everyone was equally a great match..so we really couldn't go wrong.  After we got off the phone we or I should say I decided we would not tell anyone until we had figure out what we were going to do.  Not even our family!  A long weekend confiding in each other...then turning to some important people in my life for guidance a decision was made.
Monday morning I was on the phone contacting all the donors to tell them the results and that we were excited to move forward.  Asking some potential donors to be willing to be a back up.  Everyone was happy to hear the news!  We did not expect to have all donors be a match...that was bitter sweet!  We had our work cut out for us.
What next...our donor has began the process of being cleared for transplant.  There are a few steps to get to cleared for surgery.  First starting with a phone interview from the transplant team...That was passed!!  This is just a few questions of health and medical history.  Next step is an appointment with the donors primary care doctor.  An intense physical with full set of labs and a couple days of certain repeat labs.  There will also be an appointment in Boston with the team for cat scan and x-rays I believe.  This will all be followed with meetings with the doctors at Brigham and Women's Hospital.  They are the team that has the final say if a donor is cleared.  The Brigham is where the donors surgery is held for the donor.  At any point are donor could be told they can't move forward and we may have to start again...but I am feeling hopeful this will all work out!
We are truly grateful to the handful of amazing people that stepped forward for Mark.  Some who are near and dear to us and others that were perfect strangers.  At a time like this so many people have step forward to help in every aspect....we feel so blessed.  It makes you feel like the world in not such a bad place this day in age!

Lack of Recent Post

It as been really hard to find time to blog recently...and it stress me out a bit.  I love to blog while Mark is at treatment.  It makes the time go by quick and it is a release for me.  Recently Mark's catheter has been acting up quiet a bit.  Therefore it has left me to be by his side...or even in the bed with him for most of the treatment.  Treatments have been lasting for about 4 hours with all the interruptions we have been having.  I am not sure where I last left off.  Due to the results of the line study coming back normal, there will be no catheter replacement at this time.  I absolutely do not want Mark to have surgery again if they think we will be in the same boat...but this is crazy!.

Yesterday I was lucky to have a volunteer sit with him for a little bit!  I was using this time to my advantage...blogging, paperwork for up coming appointments and maybe even clean my purse out!  There is never enough time in the day and recently when the evening comes I just want to go to bed!  We are eagerly awaiting a couple big transitions in our lives.  I think at the end of the day it all just exhaust me.  I also carry a little guilt for feeling so burnt out...if that makes sense to anyone?

Mark's craving after dialysis...Pizza!

Family Fun :)

Last Thursday was a day for fun!  We went to Boston for the afternoon.  We were invited to the 4th Annual Cuts for a Cure at Ned Devine's.  This fundraiser is to raise money for the Children's Floating Hospital in Boston.  We were lucky enough to get tickets from Rich.  Thanks Rich :)
Rich also made it possible for Mark to be involved.  Mark was able to get on stage and do a cut as well!!
Here is the link :
 www.csnne.com/pages/bruinsvideo?PID=4i_EKlGVdCL2PaIZAOOpAb8vnn6NMT88

And some pictures...

What a fun day :)

Waiting...

As always we are waiting on answers.  The results came back fine with his catheter study.  The only thing they had questioned was a possible heart murmur.  Not be be negative but my thoughts on that was...great another thing to add to the appointment list.  I'm just super burnt out and eagerly awaiting transplant to come soon.  The catheter still ran with problems Monday.   I had to lay in bed with Mark for the full 3 hours of treatment to keep him still.  Here we are on Wednesday and still no answer.  He seems to be about 20 minutes into treatment with no issue...this is great!  Also a little weird that it was so touchy and know it seems to be okay??  Who knows...The doctors just did rounds and not one mention of the catheter or possible murmur came up..I will just have to track them down before we leave today.  I was not able to chat with the doctors, because I was trying to find out if any results were in from the potential donors.  We have hit the two week mark and I'm getting anxious.  
We headed into Boston early today for dialysis at 9 and then ophthalmology appointment this afternoon.  I'm also hoping to stop in to have Mark's x-rays done before we leave today.  These are all things that have to be done before Mark can be cleared for transplant.  We are so close to being done with the list!  Our biggest appointment will be on April 20th.  Urology will determine what is going to happen with his native kidneys.  I am sure the big topic will be the fact Mark has such a high urine output.  I just feel as if we are so close...yet so far to transplant.

Kidney Facts

The need for people to educate themselves about chronic kidney disease becomes more  
pressing every year. A recent study found that 26 million American adults currently have CKD 
and that before being diagnosed through testing, the vast majority didn’t know it. “Chronic kidney 
disease is a silent killer because most people feel fine until it’s advanced,” says Andrea Savisky, 
Director of Programs.  National Kidney Month (March 2010) and World Kidney Day (March 11) 
mark a perfect time for health-conscious adults to learn more about CKD and the benefits of early 
detection. 

-that's 1 in 9 adults--have chronic kidney disease, and most are not aware of it. Because symptoms may not appear until the kidneys are actually failing, millions of people with kidney damage remain unaware and are not taking steps to protect the health of their kidneys

Here are some quick facts about kidney disease:

• 26 million Americans have chronic kidney disease (CKD) and millions more are at risk.
• Kidney disease is common, harmful and treatable.
• Each year, 112,000 people are diagnosed with kidney failure. That's one person every five minutes.
• More than 547,000 people in the U.S. are receiving treatment for kidney failure. Patients with failed kidneys need dialysis or a kidney transplant to stay alive.
• 382,000 currently depend on dialysis to stay alive.
• 88,000 are on the waiting list for a kidney transplant.
• African Americans, Latinos, Asians, Native Americans and the elderly are at increased risk for kidney disease.
• The leading risk factors include high blood pressure, diabetes and family history.
• Early detection and proper treatment can slow the progress of kidney disease.

Information found on The National Kidney Disease Website

Snow on April 1st...Not A Joke!

It's April 1st and it snowing...Really?  This better be the last storm of the season.  We headed in to Boston a little earlier today.  Mark had is catheter study today.  We are going to be home on the late side tonight :(  The study started at 1 today.  We usually start dialysis at 1. The study involves running dye into his line to find the problem area.  The doctor is looking for an area that my have a kink or clotting.  After a bit of confusion with  the radiology staff, they started the study.  The rule is when you have a central line for dialysis, no one is to open the catheter unless they are a dialysis nurse.  The team that was doing the study was trying to start the procedure without the dialysis nurse.  Almost an hour after the appointment time I called dialysis for Mark's nurse to come down.  Radiology had never called upstairs like I had asked them to.  They were all standing around complaining that I would not allow them to access his cath, but not calling for a nurse either.  I just felt like screaming.  To top it of the doctor that was running the study was a resident.  A new doctor is never any fun!!!  They ask way to many question....and the same questions over and over and over.  I finally told her to call the doctor who ordered the study and ask him!  We have been at dialysis for about 45 minutes now, and no word from the test.  I have a feeling we will not be getting results today.  There are transplants going on today and the doctors won't be around to read results.  I guess we will enjoy the weekend and cross that bridge on Monday!