Friday, October 06, 2006

David's Story

As I sit at the hospital, I realize how hard it is to write David story while it is still happening. We don't know the ending yet, but he has been a miracle boy from the beginning, perplexing all of his doctors and surprising everyone.

My fourth child and only boy, David, was born with a rare and complicated heart defect called Hypoplastic Right Heart Syndrome. We learned of his diagnosis in utero, and until recently, that was the worst day of my life. We were told he would either need a series of three surgeries or a heart transplant to survive. His life would never be normal- "they" said. But one doctor, our perinatal cardiologist, said the right thing....."You want to know you have done all you can for your child." That is so true. Isn't that what we want for all our children?

The First Surgery-
David was born on September 27, 2002 at St. Joseph's Hospital in Tampa. We were all ready for him. Just according to the plan we made, he was immediately rushed out of the room to the NICU, stabilized, baptized, and prepared to be transported across the street to the Children's Hospital Heart Center. David was put on prostiglandin immediately after birth to keep the hole between the right and left atriums in the heart open in order to survive. He had a heart cath with a balloon septostomy at 1 day and a "BT shunt" surgery at 5 days old. This surgery would place a temporary shunt to give him time to grow a little to be prepared for the next surgery. He was a "blue baby" because the level of oxygen in his blood was kept low. He came home 3 weeks later on a feeding tube. David developed severe reflux, so Hubby and I were on 24 hour shifts to feed and make sure he didn't aspirate. I recall being VERY sleep deprived. (Plus my 3 other children and their school and stuff. My husband was actually trying to work at the time to pay for all of this. How did we do it?)

The Second Surgery-
David had his 2nd heart surgery, the "Glenn", at 4 months old. This surgery would return the blood from his upper body straight to the lungs, bypassing the right side of his heart completely. After this surgery, he developed a relatively common complication, chylothorax effusions (fluid leakage in chest). Many children who have this complication go on diuretics and a no fat diet for 6 weeks. But David's effusions persisted. He battled chronic effusions causing 10 more hospitalizations with chest tubes and procedures. He had collateral coils placed in his chest (in the cath lab) at 8 months old, a "Thoracic Duct Ligation" surgery at 11 months, and Octreotide injections at 11 months. After 18+ months, the effusions finally stopped leaking and we slowly reintroduced fat into his system.

It was a very stressful time. We worried about his heart, infections, calcium levels, reflux, low weight, blue spells,... in addition to the regular baby stuff. But he did get stronger and feedings gradually got better. His effusions got better. As he started holding up his head, sitting up, and later walking (- mostly walking!), his overall health became better and better.

It was very hard surviving those first 2 years, but we did. By the time David was 3 years old, he was looking like a "regular" kid. He was running everywhere and getting into everything. He loved to ride his tricycle, dance to "YMCA", play baseball, and play with his trains.

But he was not "regular", by any measure! There certainly was something special about this boy. He touched hearts of everyone who met him- whether friends or total strangers. He would walk into a room, and people had to stop and comment. He was friendly and so incredibly sweet. He would strut down the halls of his big sisters' school giving "hi five's" to all the big kids. People in Starbucks and local restaurants greeted David when he came in. And, there was not a mean bone in his body. It is hard to believe, but he was SO GOOD, so well-behaved, and had such cute manners ("no thank you"). He had quite a contagious laugh! What a precious miracle!

The Third Surgery-
As David grew, the Glenn surgery would not be sufficient for his body's oxygen supply. On May 16th, 2006, David had the "Fontan" surgery. This surgery uses a gortex conduit to return the blood from his lower body directly to the lungs bypassing the heart. This surgery would complete the "Fontan circulation", leaving a 2-chambered heart rather than the normal four. David would have to take daily medications and wouldn't be a marathon champion. But after this surgery, he could live a pretty "normal" life.

After the Fontan, David's body started having difficulty with this new circulation. He developed a clot in his new conduit. He coded twice and we truly thought we lost him. Chances of his surviving were very low when they rushed him back into surgery. After many hours, he came out on an ECMO machine which is a heart-lung machine. We started talking about getting on the transplant list, but heart transplants in this type of acute case had little chance of success. David stayed on ECMO for 2 days and somehow, to everyone's surprise, he came off of it. They kept his chest open for 4 more days and he was on the ventilator for the week following. It was a true miracle that he turned around so quickly. Our hope was renewed. He is our miracle boy!

When David came off the ventilator, the doctors decreased his sedation. I started preparing to comfort an upset, miserable three-year old. That day never came. Neurology was called in and tests were run to see what has happened with his brain. At some point, David's brain did not receive enough oxygen. He had had a "global hypoxic event". David was completely unresponsive: no reflexes, no nothing. The neurologist said that we "may never see any more than this". This was the worst day of my life. How can you grieve your child when they are physically still there?

But this is David- a boy who has battled giants! By the time we called in another neurologist for a second opinion, David was already showing improvement. He started responding to touch and sound with small movements. Unfortunately, he had many setbacks medically with low blood pressure, more fluid in the chest, and his right lung collapsed. Getting all of his organs to come back takes time after all he's been through. With another time on the ventilator, we were exhausted of this roller coaster ride. He receives therapy and sees many specialists. We are working to get his stomach tolerating feeds through his new feeding tube. We still have fluid problems and his electrolytes are quite the balancing act.

David is still in the hospital. He has moved out of ICU this week and is making tremendous progress! His brain is slowly "waking-up" and what doesn't wake will have to be re-taught. We are looking to moving to the pediatric in-patient rehab at Tampa General Hospital when he is medically stable.

David is smiling now. He loves music and rides in the wagon. He is working to regain control of his arms and legs. He can get the oxygen canula off his face; he doesn't like it. He has said a couple of words and loves to drink juice. Every day I see more and more of our "David" coming through. Once again, he is surprising all the doctors with his progress. Each little sign of "him" gives me HOPE.

David is an amazing little boy who loves life and he's a real inspiration. I can't imagine life without him.


**update - David passed away July 11, 2006. Here is the post from that day on his carepage.
July 11, 2006
We're very sorry for the delay in this post. The events of the past 24 hours kept us very busy until about noon when we went home to find ourselves without network access. Justin has been good enough to let me borrow his house to send this post.

We really want to thank everyone for their love and prayers during David's long ordeal. This roller-coaster has been unbelievable, and being able to talk to all of you directly and hear your words of encouragement has been a real gift.

This morning at about nine, David's time here on earth was over, and he went back to his home in Heaven. God lent us this fabulous boy for only a short time, and it is beyond difficult to see him leave. The hole in our hearts is beyond measurement, but we're holding on to the love and joy he shared with us and we're thrilled that he has been able to touch so many.

In a day of such darkness, we have seen one moment of light: the moment of David's passing. At the moment when he had no strength left, he gave us one last gift and took our burden from us. Let me explain...

David's surgery last night went as we feared. It was technically a success, but he was simply not strong enough to recover from that type of trauma. When we finally entered the ICU, we were met by all of our friends from the hospital who were on duty, and several who came in just for us. The news was grim: his blood pressure was not sustaining and there was very little chance of a successful recovery.

Our friends held us up and provided guidance as to what on earth we should do. Dr. Suh, Dr. Chapados, Dr. Pettigrew, Heidi, Chris, Erin, and many others were there to be sure that we knew they supported any path we chose to take with his care and that everyone was in agreement that David was very very sick.

We gathered our family at the hospital and explained to our girls that David was so sick that we had to take the opportunity to tell him how we loved him in case we didn't get another chance. I've never been so proud of our girls, as each of them took some time alone with David and saw through the injury and tubes and wires to talk with their brother one more time.

The girls built him trophys at Emily's suggestion and with the help of Lisa Winesette, the child life specialist, who came in from 9-12am just to help David's sisters. She showed how that job should be done: with love, attention and knowledge all putting the girls needs first.

When everyone had had a chance to talk to him, Lori and I settled in for a difficult night.

By the morning, David was being supported by several different drugs that can keep blood pressure up artificially well past the point when the body can support itself. The best use of these drugs is to buy time so that the body can heal, or to get the patient to surgery. But this morning, it was clear that David was not healing, he was losing his battle. And there really were no options left for us to pursue -- we and the hospital staff had done all we could.

Lori and I were faced with the fact that these medicines were holding David here on earth, and the only reason was so that we could keep him with us for a very short, very difficult time. It was leading to a decision that we dreaded.

Which finally leads us to David's final gift.

Literally just as we began discussing what to do, he lifted that burden from us. With a sudden change in heart rythm to get our attention and ten seconds of final kisses and tears, David made our decision for us and left this world to go home to his Father in Heaven.

We could not prouder of our son. I will post more in another update probably tomorrow. For now, I am reminded of Julie's graduation where we heard the song, "For Good"

Who can say if I've been Changed for the better?
I do believe I have been Changed for the better
And because I knew you... I have been changed for good.

Please let David's life change you, both for better, and for good.
Bill & Lori

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