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At Luke's two-week check-up our pediatrician heard a heart murmur and referred us to a pediatric cardiologist. We were very scared about it. Fortunately, we were blessed with wonderful cardiologists who diagnosed Luke with a small to moderate VSD. Since that time we have just been monitoring him and waiting for the hole to close itself over time.
In January of this year, however, our boy became very sick. First with an ear infection and cough. The ear infection cleared up with antibiotics, but Luke's fever would not go down. He became very lethargic and didn't eat for days. Our pediatrician did a blood test and it was found that there was bacteria in his blood. He had somehow gotten endocarditis. We think he was infected when he fell down with his pacifier in his mouth and cut his gum open.
We spent a week in the hospital with him on heavy duty antibiotics and another five weeks at home with my husband and I giving him the antibiotics intravenously, through a catheter in his arm. Through all of this our Luke was incredibly brave and it seems that he grew up right in front of my eyes.
In two weeks we will be taking him in to have his VSD closed. We are, of course, worried and anxious, but we have faith that he will be taken care of. He will be in excellent hands and we have known from that very first day that our boy is a fighter.
We thank God for all the blessings that he has given us, especially for our two beautiful children that amaze us everyday.
Update July 27, 2002
On June 18th, 2002 Luke underwent open-heart surgery to repair the "hole" in his heart. We prayed and we researched and we lost lots of sleep over it. We worried about the fear and the pain that Luke would have to endure. We worried about the small, but very real chance that he would need a pace-maker as a result of the surgery.
Our prayers were answered on June 18th at Children's Memorial Hospital in Chicago! We had taken Luke to meet the Child Life Specialists a few days earlier to help prepare him for the surgery. This was so helpful for him. The day we arrived, Angie, one of the Child Life Specialists, was there to greet us, just like she had said she would be. It was so comforting to have someone there for Luke, working on his side. We knew right away that we were in the right place. The nurses and the anesthesiologist and surgeons were confident and very good with Luke.
We were able to give Luke an oral sedative (no needles!) to relax him. He became sleepy and giddy. Ben was able to carry him into the OR and sit with him while the anesthesiologist put him fully under. This was a huge comfort to us. One of our biggest fears was letting him go. We dreaded the thought of them pulling him away from us while he was crying. The staff at Children's were very sensitive to this and it went so smoothly with no tears (from Luke anyway).
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The surgery took approximately 4 hours and the nurse practitioner came to the waiting room to update us hourly. She would smile right away when she saw us so the we would know that everything was going well. Finally, Dr. Mavroudis (our hero, heart surgeon) came in to inform us that Luke had made it through the surgery beautifully with no complications and no need for a pacemaker.
They were able to take him off the ventilator in the OR and then he was moved to the ICU. We were able to see him right after he was moved there. He was very sedated but he recognized us and was able to talk to us. One of the first things he asked for was his favorite hat. Everyone thought he was so cute sleeping with his hat on!
After one day in ICU, Luke was moved to the post surgery/cardiac floor. The following day he was able to walk from his bed out to the hall. We carried him from there to the playroom where he so badly wanted to go. That is the beautiful thing about kids. They are so determined to be kids and play and do all the things they can. Ben and I said several times that if we were in Luke's place we would be in bed feeling sorry for ourselves, but not Luke. He wanted to go to the playroom to see the wonderful man named Jim play his guitar and sing with all the kids. So he did. He was so proud of himself and of course, we were proud of him too.
In the end, he was in the hospital for a total of 3-1/2 days, which still amazes us! He improved everyday and a week after the surgery he was out in the backyard running with his toy lawn mower.
Luke met with his pediatric cardiologist, Dr. Randolph (another wonderful man) on July 23rd. Everything looks great and we can "turn him loose". No more restrictions! No more medicine! Luke will go back in three months for one last echo and after that he won't have to go back for a year!
We feel incredibly blessed to have Luke as our son. We watched him go through quite an ordeal with strength, determination and grace.
