Trey was born on June 24, 2011 and was diagnosed with ALCAPA, a very rare congenital heart defect, on September 12, 2011. This is the story of our journey.
Please feel free to email me (Randi) if you have any questions or comments: treyheart@gmail.com
Please excuse any misspellings or grammatical mistakes. I'm usually writing from the hospital on my netbook while my mind is just running....

Friday, September 16, 2011

The Beginning

Trey is my third son. He was a pretty normal pregnancy, meaning that no pre-eclampsia yet I did have some high blood pressure. He was born at 39 weeks because my blood pressure was creeping up and they wanted to avoid possible late stage pre-eclampsia. He was born on June 24 after 13 hours of induced labor. He was 7.5 lbs and 21 inches long. The heaviest of all of my babies by 2 lbs. He seemed perfectly healthy and came home with us after 2 days. His follow up well visits with the pediatrician were fine and he was gaining weight like a champ.

Now, he was a little raspy sounding since birth and he coughed quite a bit more than my other ones but it seemed like normal newborn congestion. I just figured he was my "coughy" child. No big deal. On August 12 we went to the mall to get new shoes for Bryce and Cole. He seemed as though he was a bit raspier than normal and I figured he might have a touch of reflux and I figured I would call the pediatrician on Monday to get an appointment for him. At about 4 pm we left the mall. I put Trey in his car seat and he sounded like he was going to start crying. He did that stuttering ah, ah, ah sound like he was getting ready to have a fit but he never actually started crying. I drove home from the mall with the 2 boys and my mother in law and when we got home I took Trey out to go nurse him. That is when I realized Trey had never stopped making that sound the entire 30 minute ride home. I got him inside to try to nurse him but I couldn't get him to stop making that awful sound. He looked kind of pale and I picked his arm up to move it but it was completely limp. That is when I put him in the car seat and ran out to get David. David agreed that his color was not normal and we jumped in the car to go to the ER, leaving Bryce and Cole with my mother in law who was thankfully, still at our house. 

We got to the ER and I ran in asking for a dr. The reception desk told me I had to wait to register and it would be a few minutes. I told them he was having breathing problems and needed a Dr. right away but they said that it would only be about a 5 minute wait. Thankfully there was a nurse in the back corner of the waiting room that heard my plea and came over. She took one look at Trey and ran us to the back to get the pediatric ER dr. Before we knew it there were about 15 doctors and nurses running in and out of the room. By this time I was flipping out! The doctors were too busy to explain anything and they were just yelling things out at each other. It seemed like a scene out of the TV show, ER. 

The doctors were finally able to get him stable by inserting an IO into his leg (a type of IV except it screwed into the bone marrow to deliver fluids... they were unable to get an IV in him). Once they got him stable they began talking about transferring him to Children's Hospital in DC. It was determined that we were going to be air lifted to Children's. At about 7:30 we left Montgomery General Hospital and in 7 minutes we arrived Children's. While the circumstances were terrible, I do have to say that the flight was beautiful. Trey and I got to see many of the DC monuments by sunset from the helicopter.

When we got to Children’s we got a nice private room and the Dr's came rushing in. The attending explained that his respiratory rate was very high and that they may have to intubate him to give him a break so that his body didn’t get overly exhausted. They looked at his chest x-rays and decided to give him some breathing treatments to see he would respond to that. My father mentioned that he thought the heart in the x-ray looked rather large but we were told by the fellow that it was actually the normal size of a baby’s heart. They gave Trey racemic epinephrine and albuterol through a nebulizer and he seemed to react very well to the racemic. They were able to get his respiratory rate under control and therefore decided not to put him on a vent.

Children’s sent out a bunch of cultures to test for various viruses and bacteria. 24 hours later Trey’s results came back positive for Rhinovirus, which is the common cold virus.
They noticed a trend in his breathing problems, that he seemed to have a breathing attack every 6 hours or so and therefore they put him on a schedule of receiving Racemic every 6 hours. They did this for about 2 ½ days. After that it was just as needed. They had him on on a VapoTherm (compressed oxygen) since he was admitted and on Wednesday they began to wean him off. By Thursday afternoon he was on the regular nasal cannula and totally off forced oxygen by that night. He passed his car seat test (he had to sit in his car seat for 90 minutes while they monitored his vitals and oxygen saturation levels) with flying colors and we were discharged from Children’s Hospital on Friday, August 19.
He came home and was doing fine but on Monday, September 12 (exactly 1 month after being admitted into Children’s) at about 10:45 am Trey was taking a nap while Cole and I relaxed on the bed with him. Trey was startled out of his nap when Cole gave him a kiss and he began screaming. He then began having problems breathing again. I was able to calm him down and get him to breath. He was still very pale and limp so I called the pediatrician. She urged me to call the ambulance and get him to the ER. I ran to my neighbor’s house to get help with Cole and Trey and I left for the ER.

When we got to the ER the first nurse I saw was a lady I know from church. It was so nice to see someone I knew! This visit I was all by myself, David was at work. We then walked to the pediatric side and thank goodness the same Dr. was there from last time. This meant that I didn’t have to explain too much to him. He was shocked to see us again and immediately started to work on him. They were able to get an IV into him very easily this time and his vital signs were all good. He took another chest x-ray and noticed that Trey’s heart was slightly enlarged. He decided to call in a cardiologist to take a look at it.
The cardiologist did an echocardiogram (basically a sonogram of the heart that shows blood flow) and Trey behaved fabulously. Dr. Callahan then sat me down to give me the results of the test. He explained that Trey had a syndrome named ALCAPA or Anomalous Left Coronary Artery off the Pulmonary Artery. Basically, the artery that supplies the blood to the heart was coming off the wrong artery. Instead of delivering oxygen rich blood from the Aorta, it was delivering oxygen deprived blood coming from the Pulmonary Artery. This was causing the left side of the heart to begin to die and fail. The muscle became large from not being strong. This was quite a shock to me and it was a pretty scary to hear, especially since David was still not at the hospital. Thank goodness my nurse friend, Tracey, was there to help with a second pair of ears. 

He said that Trey needed to have surgery in order to survive. The surgery consisted of moving the Coronary Artery from the Pulmonary Artery and attaching it to the Aorta. Afterwards he would need help from medication and time for his heart to regain strength and work like it was supposed to. It was at this point that the Dr. stopped to tell me that he thought I seemed to be taking this news rather well. He wanted to know if I was ok or if I was a mess inside. Well, I figured since it was just me there I had to somewhat hold it together. Plus, I had lost it the last time he was in the ER. At that point no one knew what was wrong and there were no answers. At least this time there was an answer and with that came a solution. It was better than not knowing anything. I couldn’t change the situation and this is what I had to deal with. I had to buck up.

He gave me the option of having the surgery at INOVA Fairfax, where he was based out of, or he could refer us to Children’s Hospital again. I chose to follow him to INOVA. I called David to meet me at Montgomery General. Thank goodness my parents were on the way to my house to watch the other children and then I had to call my in laws to ask them to come back from vacation.

Trey was airlifted to INOVA and we went by car to meet him there. We got there and were met by Dr. Craig Fetterman in the PICU (Pediatric Intensive Care Unit). Dr. Fetterman explained all of the procedures they were going to do to him that night and that he was going to be sedated for them. They put him on a ventilator to help him breathe and a central line to deliver medication. We waited outside in the waiting room for about an hour during that time. When we came back in he looked so much more relaxed. We were then told that he would go to the Cardiac Catheterization Lab to confirm the diagnosis. This is where they send a camera up a main artery into the heart and inject dye into the blood to see exactly where the blood was flowing. By this time it was about 1:30 am and we were exhausted. Both David and I slept in the hospital room that night, me on the pullout chair and David in the glider. We both got awful sleep that night.

The next day Dr. James Thompson came to explain the procedure that he was going to be doing on Trey. At about 1:45 pm the transport team came to bring him down to the Cath Lab. At about 4pm they came to get us and Dr. Thompson explained that the diagnosis of ALCAPA was confirmed. He then informed us that Dr. Irving Shen was on his way to tell us about the surgery.

Dr. Shen came in with a model of the heart and explained ALCAPA to us again. He explained how he was going to fix the problem and then told us that Trey would be having surgery the following morning, first thing. He explained all of the risks and there were many of them! There was also the possibility that the surgery wouldn’t work. If they were unable to get the Coronary Artery to flow blood through it correctly, he wouldn’t come home. Yet, if he didn’t have the surgery the heart would fail and he would die.

We went home that night to get some sleep before the big day and we returned to the hospital at 6:30 am on Wednesday morning. He was wheeled into open heart surgery on September 14. After 6 hours they came to tell us that the surgery was a success and that we would be able to see him in about an hour. They did inform us that he would be coming upstairs with his chest open on the ECMO machine. Both were things that we were informed about earlier that could happen. Keeping his chest open allowed his heart to swell without becoming compressed and the ECMO machine is a machine that pumps his blood for him so that his heart can rest. The machine has tubing that comes out of his heart, sends the blood through the pump, through a machine that puts oxygen into it, back into his heart and then throughout his entire body. It does the work of the heart for him so that his heart could take a mini vacation.

The surgeon briefed us on the surgery and told us that they measured that his heart had only been pumping an output of 7%. It was amazing that he was alive and aware! They were successfully able to move the artery to the right place and it was lucky that we came in when we did. He thought that Trey may not have survived more than a week or two more. He said that he would have had a heart attack and no type of resuscitation would have revived him.

We were finally able to see him and it was quite a shock. He was on a lot of machines! The rest of the day on Wednesday was spent getting the right flows on the ECMO to keep all his vitals stable. They told us that he would remain on the pump until at least Friday to give him a rest. I decided to spend the night at the hospital just in case Trey needed me and David went home to get some necessary sleep.

And that is where we are now… I’ll be updating this blog as often as I can to let everyone know how Trey is doing and to document his journey.

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