Sunday, September 26, 2010

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.
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.
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