Patrick

Patrick was born on September 17, 1991. He was not diagnosed with his heart problems until he was around 4 months old. Here’s his story.

Patrick had a “cold” from the moment we brought him home. I would take him to the local health department and the nurse there would say “he sure is breathing hard, you may need to take him to the pediatrician”. I would take him to the pediatrician and he would say it was a cold and prescribe antibiotics. I know that nurse knew something was terribly wrong. In between the two health department visits I bet I took Patrick to the pediatrician 5 or 6 times. More antibiotics, no results. After his second series of shots and the same comment by the same nurse – I changed pediatricians.

From the first visit to the new pediatrician, our world was turned upside down. We were immediately sent to Birmingham, Alabama to see a pediatric lung specialist. The first thought by the new pediatrician was cystic fibrosis. The lung specialist saw Patrick that day and would not let us leave her office. She hospitalized Patrick right then and there. His oxygen level was in the mid-80s. They did numerous tests during our hospital stay for cystic fibrosis and other lung related diseases, including RSV, but the tests results were all negative.

One morning after about 6 days in the hospital the nurse came in and asked me if Patrick’s oxygen level had been going down through the night? I told her that the machine kept going off but I thought it was like all the other times – Patrick just moved or something. It wasn’t long until I found out why she asked me that – Patrick’s oxygen was steadily going down. He was basically dying right then and there. Immediately the Critical Care Transport Team was called and Patrick was moved to Children’s Hospital and taken to the PICU unit. He was very, very sick and needed many, many prayers.

Patrick was admitted to the PICU and by late that evening was placed on a ventilator. He no longer had the energy to breathe on his own. He needed to rest! We were devastated! The very next day a pediatric cardiologist was called in and after an echo was performed we were given the devastating news. Patrick did not have one heart problem, he had many!!! The diagnoses were : Tricuspid Atresia, Transposition of the Great Arteries, ASD, VSD and Subaortic Stenosis. (Babies with his conditions do not survive past six months of age. Patrick was 4-1/2 months old at the time.) There are no words to even begin to say how we felt. If we thought that was the worst of the worst – we were wrong!

The key to Patrick’s survival was open heart surgery. Actually he would need to receive three open heart surgeries over a period of time in order for survival. The first one would need to be done as soon as possible. The problem was that they couldn’t do the surgery until they could fix whatever it was that was making him so sick and they couldn't get him well until his heart was fixed. The doctor’s would gather and talk daily trying to reach a median but none was to be available: Patrick finally tested positive for RSV and it was bad! There was no way they could do surgery until the RSV was cleared up.

While waiting for the RSV to get better Patrick developed many other complications: problems with kidneys and liver, the development of an intestinal infection which resulted is such severe pain that he put himself into a coma, all of his major organs were affected in some way or another. (Patrick remained on the ventilator during his entire hospital stay except for the last 2 weeks). I prayed many, many prayers. I asked others to pray many, many prayers. The cardiologist needed to do an arteriogram to get a much clearer picture of Patrick’s heart before he did surgery. The doctors waited patiently for a time when Patrick would feel a little better. Finally we received a call via beeper to tell us they were taking Patrick to UAB Hospital for the arteriogram. It was now or never! Patrick was getting worse and they had to do something.

The arteriogram went well and Patrick was transported once again to the PICU at Children’s via the Critical Care Transport Team. The cardiologist told us that everything was as he expected and they would do surgery as soon as Patrick was a little better. It was too dangerous to do the surgery while he was still so very sick. The cardiologist really wanted him to be off the ventilator. Later that evening Patrick became non-responsive. Once again he put himself into a coma. Nobody could figure out why. The next morning they did an x-ray on him to see if they could locate the problem.

That afternoon the cardiologist told us that they had found out the reason for the coma: he had left a wire in Patrick after the arteriogram and that the radiologist found it when he read the x-rays. The cardiologist also told us that they could not wait any longer. By all standards, the arteriogram wire should have already traveled through his veins and into his heart or up through his brain which would have instantly killed him. The wire had not moved that far yet but would. Patrick had to have the surgery the next morning or he would die!

I had begun to make angels for all the families and their children. My first one was one that hung from Patrick’s IV pole and it never left his side. I can remember looking up at the cardiologist and saying “his angel will save him”. I also remember the cardiologist looking at me and saying “I really hope so because it’s bad, Patrick has only about a 10% of making it through this surgery. Because of my error, we are having to take Patrick before he is ready, he is very sick and very weak and I’m not sure he is going to survive this one.”

During our months at Children’s I had made many walks to the chapel and down the halls by myself – I remember praying over and over and over: “God, If you are going to take him, please take him now. Don’t let me take him home, bond, love and grow with him and then take him from me.” I made my walk to the chapel again and prayed the same prayer for a long, long time. After we went in to see Patrick, the social worker for the PICU called me into her office. She showed me an angel candle on her desk and told me that she would have it burning all day tomorrow in honor of Patrick. We then left for the Ronald McDonald House. It was going to be a long night!

The next morning when I walked outside of the Ronald McDonald House I remember looking up to the sky and there was the prettiest, brightest sunrise I had ever seen. A feeling of peace took over me. I had gotten my sign and Patrick was going to be just fine. I wasn’t scared or afraid of losing him no matter what the doctors’ said. I had a higher power working on my side. My son was going to come out of this surgery alive!

The surgery took forever. Patrick made it through surgery with flying colors. It took a lot longer than they thought but he had made it. I had a friend who worked in the CICU Unit and she came to me and said “We can’t explain it, but Patrick is doing wonderful! We can’t officially remove him from the critical list for 24 hours but I will tell you that he is doing fabulous! Of course it was at this point that I fell apart. Once my tears were gone – I made a “thank you” trip to the chapel and then waited to see my baby.

Patrick did well after surgery with the exception that he couldn’t be taken off the ventilator. So after about 5 or 6 days at UAB he was again transported back to Children’s. They had to get him off that darn ventilator. Children’s successfully removed him from the ventilator by going very slow. We went from the PICU to the Special Care Nursery and finally, a regular room. Once we were in a regular room, they had to detox him from all the pain meds he had been on so long (by now it’s been about 2½ months).

This was horrible. He shook, cried and threw up for 24 hours solid. This was very traumatic for us as his parents to watch him go through that misery. I begged the nurses to give him Tylenol or something to help him through it but they wouldn’t. They said that “cold turkey” was the quickest way to get this part over with. Sure enough, after 24 hours he stopped all the withdrawal symptoms. Now it was time to learn to eat again. They told us we would have to teach him to eat again because he had been without food so long. They handed us a teeny, tiny bottle with just a dab of formula in it… I held it to Patrick’s mouth and he about sucked the bottom out. From then on it only took about 2 weeks for us to be discharged. Our nightmare was coming to an end. Patrick was going home.

At home Patrick did well. We couldn’t take him anywhere or be around anyone sick for about 3 months but that was OK – we were home. He slept a lot and I worried constantly but we made it. I tried not to think about his next two surgeries that would be required to “palliate” Patrick. But the second one came way to soon.

Patrick’s next two surgeries (one in January 1993 and the other in September 1995) went just as planned. He ran a fever both times but antibiotics knocked them out. Our stays were from 8 to 10 days both times. He recovered well from both of them and the difference after the final one was amazing. He could breathe again! Oxygen levels in the low 90s. Whew – what a ride and one I do not want to have to take again.

Today Patrick is a loving 14 year old boy. He is a typical teenager with an occasional smart mouth, the mother-doesn't- know-anything syndrome and girls seem to be the focus of his life. He will turn 15 in September, 2006. Learner’s Permit is right around the corner – look out everyone. He continues to take medications everyday and will for the rest of his life. Although they are not sure what the future holds for Patrick, we are living today! He sees his cardiologist once a year.

In addition to the heart defects, Patrick has acquired other problems like acid reflux, exotropia (eye disorder), chronic hematuria (blood in urine), hypercalciuria (too much protein in urine) and migraines. He is slower and doesn’t have the energy other teenagers do but we can work with that. God has left him for me to enjoy and I will be eternally grateful for that gift!