WIsh I was there...

So today was the mile run for the 4th graders at school.  It was 10am this morning, and parents were invited and encouraged to attend to cheer their children on.
I found out yesterday.
I couldnt be there.

BUT on the plus side, my friend Dana R was there with her camera, taking WONDERFUL photos of her son Taylor,  and took some of Peter as well and sent them to me.
so without further ado, Peter "running" the mile... ( I use the term running very loosely. Peter does not run..he moseys. They ambles. then jogs. then takes a rest. then moseys again. then looks at bugs...)

This first picture he is in "Battle Force 5 mode".  Channeling the power of Stanford and the Reverb, he is in gear...

 His sweet, sweet teacher, motivating him and running with him and trying to keep him going. He looks like  he is just in la la land, off in some other world, walking to the beat of his own drummer.

 Ok, trying a little harder now...

 Checking on his best friend and classmate who he kept time for.

 Taking his time, moseying along.

 Still running...

 Working hard to keep up with his classmate(who he has a little crush on. He likes the blondes)

I am very proud of him and he did such a great job. It isnt easy for him, but he tried really hard.
Thank you Dana for the wonderful pictures, I appreciate it!
Thank you, Dad, for taking time out of your day to go by and cheer him on, I know it meant a lot to him.

I wish I could have been there.

5 year anniversary

Today marks the 5 year anniversary of Peters heart transplant. I cant believe how time has just flown by.
I was thinking back this morning to the long strange journey that has connected two very different families from two very different places.

So in honor of today, here is the entire Peter-Devan story.  The entire transplant story.  I have never written it out before. 

June 2000, Peter McBride was born.  He was a healthy 8 1/2 pounds and 21 inches long. Pink, Pretty and a severely deformed heart. Hypoplastic Left Heart is what it is called. The left side of his heart never formed properly and did not function. 6 days after birth he had his first open heart surgery.  he struggled.  he almost died several times. He had a small stroke.  At one point his heart stopped completely and the doctors and nurses opened him up in the recovery unit to manually massage his heart.  According to his surgeon "Someone up above is looking out for your little guy".  Charles answered "You have no idea" (The whole church and family had been fasting and praying for Peter).  Dr W answered "Actually, I do.  99% of Babies with this do not survive cardiac arrest.  They dont. Peter did...twice".  After a month he finally came home.

December 2000:  Peter goes in for surgery #2.  This is the easiest of the set of surgeries.  He is home in a week.  Life was bliss between this time and his final surgery.    Yes he would get tired easily and when he got sick he would stay sick for awhile, but all in all it was a good period of time for us with his condition.

March 2004:  Surgery #3.  One of the most difficult of the trio.  Peter couldnt recover. He was in the hospital almost 10 weeks trying to recover.  his liver and kidneys werent working properly, his tubes wouldnt stop draining. They had to go back through and tweak some things. It was a nightmare.  afterwards when he was finally able to come home he struggled. He was sick all the time. He was so tired and grouchy. He hurt.  he just didnt feel good.

March 2005: Doctors visit. We asked how long he could go on like this.  They told us that with all the tests they just did that his heart was actually functioning good, and they didnt really know how long it would last until a transplant may be necessary.  a few years, at least.  But to be on the safe side we needed to contact our insurance and find out all the details of our coverage. We even made an appointment with the doctor up in raleigh for a visit to get his opinion. Because of our insurance, we knew staying in charlotte for the transplant was not possible.

June 2005:  Family reunion in Chattanooga, TN. My in-laws were there with us and we were staying with them in their motor home.  We did lots of walking and sight seeing. Peter seemed to be doing well. 3 days before the reunion Peter fell off the bed and into the wall. The hook that holds the door in place while driving was sticking out and he fell on it.  It gashed his butt cheek and he never said a word.  He said his butt hurt and that was all.  The next day I was helping him get changed and I noticed blood. I asked what happened and he said "Oh it's from when I fell out of bed and into the hook"  It was a huge, deep gash. Into the fatty tissue.  I took him to the hospital, but because it had happened 12 hours prior they couldnt stitch it up. They cleaned it out and packed it up really well.  But Not before giving me the 3rd degree about how it happened, when it happened and what it happened on etc.
 1 day before the reunion we awoke.  Peter said he didnt feel well. He said his stomach hurt. he thought it was because he was hungry.  So he ate half a banana.  Then he climbed up into bed with us and said he really didnt feel well. He just kept crying that he didnt feel good and that he was just too weak to walk. Charles and I told him to close his eyes and go back to sleep and maybe he would feel better.  A little while later I heard Peter really crying and thrashing around.  I went in to tell him to quit being such a drama queen.  He was breathing so hard and so fast. His little pulse was going so fast I had never seen anything like it.  He was sweating profusely.  his eyes were rolling up into the back of his head.  he was crying. "Mommy! Mommy! Help me mommy! help me!" He put his hands on my face and said "Mommy, where are you. Help me mommy!". He was blue. Not a little blue. All blue. His veins were showing through his skin like cobwebs.
I picked him up, stole the keys to my in laws car and dragged Charles with me.  We rushed him to the emergency room of Childrens Hospital in Chattanooga.  Not our city. Not our state. Not our hospital. Not our doctors. They took one look at him and announced a code blue all available cardiac members.  Peter was surrounded by nurses and doctors trying to get him stabilized.  his oxygen level was so low. It was at like 55 percent. His heart rate was 235 beats per minute. 
We were treated like child abusers and asked the same questions over and over and over again. Trying to get us to slip up. Trying to get us to make a mistake so they could look at us and say "a ha! we knew you did this to him". They finally got him stabilized. Charles and I were placed in the Ronald McDonald home there in chattanooga. When we came back to visit him, we got asked the same rounds of questions as before, trying to get us to admit we had done something wrong.  What medications was he on. When did he take them? What were his dosings? Are we sure we gave him his medicine?  You were just in here 2 days ago for a suspicious fall, why dont you tell us what's really going on? It was crazy.
After a week the doctors came to us and said " He has an abnormal rhythm. All the blood work suggests he contracted Epstein-Barr virus somewhere and it just threw everything out of whack and ruined his heart for good. He has to have a heart transplant.  We do not have the facilities here to take care of him. he needs to be transferred to a better hospital. A hospital that specializes in this.  With your insurance you can go to Alabama, UNC, Cleveland, Pittsburgh or Michigan".   We chose UNC. Within a day Peter and I were on a medical flight back to North carolina. Charles drove back with Finn. There I was in that plane, up and down and up and down. I got air sick and as soon as we landed at the base I stumbled out of the plane and barfed.  A marine standing nearby said "Uh, ma'am, you okay?". I looked up at him, green faced, puke stringing down from my mouth. I nodded weakly and the nurse on the plane handed me a bottle of water.
We got Peter transported to UNC and he was immediately placed on the Transplant list. Priority 1A.
We could not go home. We had to stay until a suitable heart was found. Hie heart was in such poor shape that he had to have a special IV straight into his heart pumping medication. He was on all sorts of things. He couldnt get out of bed for long periods of time. He would throw up at the drop of a hat.
He started Kindergarten at UNC.  I wold take him up to the 7th floor in a little wagon to see Ms Judy. He could only do about 30 minutes before being completely wiped out.  His playroom was limited as well.
for 91 days we waited in the hospital. I lived at the ronald mcdonald house and the hospital.  I only saw Charles and finn for 2 days on the weekends. towards the end my father in law found a place for his RV and he and Nana Dee kept Finn with them so I was able to see him every day.  It was a sad, dark time for our family.
At the end I told them I couldnt do it anymore.  was there any way that Peter could come home and finish waiting??  We would get a home health care nurse, we would get  somebody to come in every day and do the bloodwork and medications and all that.  We just couldnt do it anymore.  The head Nurse said it wold be possible and she and I worked together to get everything all set up.  I packed up Peters room. BAGS AND BAGS of gifts, toys and junk, all from admirers (nurses who fell in love with him).  
The plan was to leave monday.
Sunday afternoon my parents had come up to help me pack up and get everything ready. I went back to the ronald McDonald house to take a nap and spend time with Finn and Charles. I told my mom and dad I would be back at 4pm.

358PM I am driving up to the parking garage at UNC.  My cell phone rings.  It is my mom.  I pick it up and say "Im in the parking deck, i'll be there in 2 minutes".  My mom was really quiet and said "They have a heart".
I was stunned. after months and months of waiting it finally happened. I was just so shocked.
I said " Are you sure?"
"yes they came in and said on paper it was a perfect match. They wont know for sure until they go look at it. But they are doing all the blood work now. They wont let him have anything to eat or drink."
I immediately called Charles who was a few minutes behind me and told him.
We went up to the floor and all the nurses were standing around crying and hugging each other and then hugging us.  Nurses who had the day off came in specifically to see him and to hug him and to wish him luck.
The pediatric surgeon was on vacation in the caribbean, so a different doctor, the adult surgeon would be doing the surgery.
330AM  We get the call. The heart is good. They are bringing it home.
530AM: Peter gets wheeled in for surgery.  I hug and kiss him goodbye, tell him to be strong and do well.
10AM: Peters heart was sewn in, and being "turned on".
12NOON: Peter was done, they were taking him to the recovery unit.
130PM; We wlked in to see Peter.  the first thing I said was "oh! He is so pink!!". He was gorgeous. His cheeks were rosy. His fingernails and toenails were pink. He looked so beautiful laying there.

2 days later he was sitting up.
3 days later he was demanding pancakes.
5 days later he was walking around with no pain medication
10 days later we were home.
5 years later he has had almost no problems heart related.  he is on a once a year schedule for the cardiologist now.

Since that day he has hardly been sick at all. When he does get sick it is over with quickly.
He has energy and stamina and endurance.  he is pink and pretty.  He can do things the other kids can do.  he can walk and run and play sports. He is a roller coaster enthusiast. he loves to hike.  He loves healthy food to keep his heart healthy.

6 months post transplant I talked on the phone with our donors mother for the first time.
1 year post transplant we were in New Orleans at the Donate Life convention, meeting them.
THEIR STORY:
They were evacuating from Hurricane Rita.  Their car was struck by another vehicle.  3 1/2 year old Devan never recovered. The Doctors said there was nothing they could do to save him. 
christie told me that as she was sitting there with Devan she was looking at the heart monitor and noticed just how strong that heart was beating and she just KNEW they had to donate it.  she knew there was a mother out there who was praying and needed it. Her husband, roger, agreed. They contacted the hospital about organ donation and they told her it would  be almost impossible.  They were recovering from Katrina.  There was no way to get helicoptors or planes in and out. They were running on generators. No land lines. no fax lines, no cell phone reception.
christie and Roger were unmoved. They insisted.  LOPA (Louisiana Organ Procurement) came in and they made it happen.  They transported Devan all the way to Baton rouge to make this donation possible.  One of the nurses hand pumped air into devans lungs the entire way as the ambulance was not equipped with a ventilator.
Through their determination and insistence, they had saved my childs life.  They didnt know us.  They didnt know Peter. They knew that their son could save another persons life and they needed to make it happen. They ignored their personal circumstances and made it happen. They KNEW we needed it, though they didnt know us.
And now Devan lives on through Peter. We thank God every day for the Legers and the Degeyters and for their decision that saved our family. Not a day goes by that I dont pray for them and thank God for all our blessings.

So Thank you to the Leger and Degeyeter family for your sacrifice and decision, despite your own personal tragedy.  You are our heros. God Bless You.

To My Oldest Son

You were born June 13, 2000. You weighed in at a whopping 8 1/2 pounds and 21 inches long. You were the easiest labor and delivery I ever had. 6 days later you were having open heart surgery and threatening to leave this world. That was one of the worst months of my life. But you pulled through, and we loved you. You were a good baby. Slept through the night at 2 1/2 months of age.

Your First Halloween I dressed you up like a Pumpkin to match the little bear the nurse in the hospital gave you. She called you her "little pumpkin". You brought joy to everyone around you. Your ready smile, your snuggles and love and big bright eyes. You were just starting rice cereal(which you HATED) and oatmeal, which you couldnt get enough of.

At 6 months old you had your second open heart surgery. You pulled through like a champ and were better than ever. We had these pictures taken and sent them to everyone we knew. Aunt Lindsey kept them on her desk and showed everybody who would look. "Uh Lindsey, you know he is not YOUR baby, right?" people would say as she flashed her brag book. In fact she loved you so much, you are the reason Aunt Lindsey got pregnant with Faith!

You LOVED mashed sweet potatoes, carrots and the tropical delight desserts from gerber.

Here you were at 1 years old. Around this time we found out you had Cerebral Palsy and the left side of your body was affected from the stroke you had when you had your first heart surgery. We started you in physical and occupational therapy. You were always such a hard worker, except with the speech therapist. You refused to talk her talk or walk her walk. I dont think I have ever seen someone get so frustrated!! You always did things on your own time table and no matter what she pulled out of her magic bag, you refused to go with the flow. We called it quits after 6 months. It was going nowhere! You LOVED pancakes and salmon!

At 2 years old you were a joy. You were struggling to learn how to walk and still refused to talk. But you worked hard in therapy and always had such a sweet smile and great attitude.

Then one day, sometime in your second year, you just stood up and started walking. Then a stranger asked you a question and I said you didnt talk and you opened your mouth and havent shut up since. It was as if your mind said "Oh I get it" and boom everything fell into place.

You loved Baby Einstein videos and really showed your sense of rhythm and musicality during the clasical music. Your favorite food was grapes and sushi...oh and jello.

At 3 you were really starting to show your personality and independence. You loved your new brother and were always so sweet with him. You also had your 3rd heart surgery and were in the hospital for 2 LONG months. We had a few scares, but again, you pulled through and continued on !! You were getting better at walking, you REALLY loved Bob the Builder. You loved spaghetti, bananas with peanut butter and yoghurt.

Here you are at 4.

I could never get that one side of your hair to lie flat. You Loved Bob the Builder, Thomas, and Shrek. You had a Shrek Birthday for your 4th birthday ! I made a swamp cake with oreo crumbs and gummy worms, and we had everyone wear those shrek ear headbands. You loved the park and going shopping. The grocery store was one of your favorite places(probably because I always bought you a bag of M&Ms to bribe you). If there was pizza or spaghetti involved you would eat it. Pancakes were a pretty good thing as well.

Here you are at age 5. You were at UNC Hospital for 3 months waiting for a heart transplant. The nurses all fell in love with you. They named you "The King" and made you a crown that said "King Peter". You are still one of their favorites up there and still can't wait to see you when you go up for check up's. This was such a hard time for our family, but we loved you and wanted to be there with you all the time. You were crabby and mean and nasty sometimes, and liked to give the nurses a hard time about taking your meds. But after your new heart you were a changed little boy. You had so much energy and zest and life!! We were so proud of you and the way you came through everything. You were Thomas the Train and CARS (lightning mcqueen) crazy!! Your favorite food was pancakes and you really started to like bacon. In fact your first real meal after your transplant was blueberry pancakes with raspberry topping. You ate an entire adult sized portion of them and demanded more!!

Here you are at 6 years old. All dressed up in New Orleans at the National Learning Congress on Organ Donation and Transplantation. We got to meet the Leger family, whose son Devan was your heart donor. People there fell in love with you too. You made everyone laugh while you were on stage. Seeing yourself on the TV screen as they filmed you, you put on quite a show. Flexing your muscles, hopping on one foot, picking your nose, smiling and making faces. You were so famous, you had nurses and doctors coming up to you all night wanting to get your picture and autograph!You started Kindergarten this year and had Mrs Whitacre for your teacher. You Loved Danger Rangers!! you loved tuna sandwiches, fruit by the foot and golden grahams!

Here is age 7. 1st grade, Mrs. Grimes class. You were running the mile. You did such a great job in school this year I am so proud of you. Your teacher really had her hands full this year with you, but she really loved having you in her class. This was the year you were named the UNC Childrens hospital inaugural ambassador of the year. You were so popular up at UNC that several of the nurses and doctors nominated YOU to be the patient ambassador. You are The King. You loved transformers, danger rangers and cars!! You started getting a taste for steak, sesame chicken and salad.

And here you are . Your 8th Birthday. I cant believe it. I am too young to have an 8 year old!!

You will be baptized this year(if you choose) and I am so proud.

You will be in 2nd grade. You love Transformers and cars. Your favorite food is steak and salad(or cheeseburgers, it's a toss-up) and your favorite color is purple. You have seen the Transformers movie a zillion times and can quote it word for word. You like to jump on the Trampoline with your brother. You are really good at reading and like to read books to Finn before I come into your room at night to "tuck you up".We are reading James and the Giant Peach together and you really like Junie B Jones chapter books.

One thing I really love about you is your willingness to try new things. Your cousin Alecia made a resolution to try new foods. You decided to do it too. I am very proud that you will try anything and generally like everything. Sushi is one of your new favorites again.

So HAPPY BIRTHDAY my dear Peter. I love you and I am so proud of you!