Devin's Story

Devin was born February 18, 2005. He appeared to be a healthy 7 lb 15 oz baby boy. The only early signs that something might be wrong were that he did not begin breathing on his own right away and we had an incident that he stopped breathing during his first night in the hospital. The nurses blew this off as nothing to worry about nevertheless we were concerned and opted to stay an additional day in the hospital. After going home we began living a normal life. Devin was surrounded by family including 2 older sisters and 1 older brother. Everything was wonderful. At his first check up with his pediatrician the doctor noticed that he had a little jaundice and asked us to come back in a week to check it again.
This is where things went terribly wrong. When we went back to the doctor she noticed that his hands and feet were a little blue so she called and spoke with a cardiologist at Doernbecher Children's Hospital (DCH). When she came back to the room she asked us to immediately go to DCH to have an Echocardiogram done. On our way to the hospital we were not to worried afterall we had him home for three weeks at this point and he was a very happy little boy. During his Echo we became worried. We did not understand what the colored pictures of blood flowing through his heart meant but the technician had changed his demeanor and kept looking and looking. He then got on the phone and asked the cardiologist if she was watching from the back, she was and within a minute she came into the room and said there was a problem and he needed to be in the hospital right away. She had me pick up Devin and waliked swiftly with us to the Neonatal Intensive Care Unit (NICU). She began explaining what was wrong although at this point we still did not understand what it all meant. They began hooking Devin up to all kinds of machines. We were terrified! A short time later a surgeon came in and told us that his main arteries going to the heart were switched which means that the blue unoxygenated blood was going to the body and the red oxygenated blood was recirculating in the heart. They told us that the hole between the left and right side of the heart had kept him alive until now but that it was closing and closing fast. They said they must perform two surgeries, one they would be doing that night to open the hole between the two sides of the heart back up and the second would be done the following day to fix the heart, called an arterial switch. We were freaking out! We were told that this was not an optional surgery he would die without it. They told us the major surgery would take about 4-5 hours, it took 8 hours and when they brought him into the Pediatric Intensive Care Unit (PICU) we were not prepared for what we saw. I became weak and was unable to stand, nothing I had seen or witnessed in my life compared to the pain I felt at that moment. He was hooked up to a heart lung machine, had tubes going in his chest, in his lungs and was plugged in to about 20 IV's. IT WAS HORRIFYING. As bad as this was it was not over shortly after the surgery they came and told us that there was another problem. They said he had an abnormal coronary artery so they had to replace it and when they did so it became kinked so they needed to go back and try to straighten it out although they said this would be extremely difficult because the coronary arteries are only about 1mm wide. They were unable to completely straighten it out and by then the damage had been done. Due to the lack of blood flow to the heart because of the kink in the coronary artery Devin had the equivalent of a massive heart attack and the end result was most of the left side of his heart died. What saved him was that he was very young and very strong. The doctor's told us that there was no text book to tell them whether Devin would survive or what further complications would come of this because there are so few cases like his. They told us that hopefully new tissue would grow around the dead heart tissue and take over but it would take time for them to know.Devin was hardly ever awake for about the next 4 weeks, sedated on multiple medications. Every once in awhile he would open his eyes. He looked so scared, within about a minute he would be back asleep. After about 2 weeks they removed the heart lung machine and closed his chest for the first time. He still had tubes going into his chest and lungs, tons of IV's and intibated but it was progress. One by one they began removing tubes and IV medications. Then came his first infection after trying to treat it with antibiotics they decided to open his chest back up to remove the infection. He began having kidney problems about this time and once the doctor's realized that diuretic medication was not going to be enough they started him on pertanel dialysis, which meant another surgery. He was gaining lots of fluid. It made him look really puffy in his head and one leg. The doctors found it odd and considered that he might have clots, since the fluid was only gathering in two area where he had IV's. They did ultrasounds on the areas where the IV's were located and confirmed that he had clots. By this time the IV that clotted in his neck had made it so no fluid could pass from his head and out his body. His head looked rather large and round. We did not realize how big it was until we looked at pictures from the week before. It was rather scary to see him like that. Than where the IV that clotted in his thigh made it so that fluid could not leave his leg and out the body. It made his leg three time bigger than it was. The doctors started him on blood thinners to dissolve the clots. They said it would take months for the clots to go away. On top of this the doctors were reasy to close his chest. Once the fluid started coming of they tried to close his chest several time with no success. After being on dialysis for two weeks he released enough fluid to stop the treatment and close his chest. On 4/6/05, almost a month after surgery, Devin was moved to the Neonatal Intensive Care Unit (NICU). This was a good sign. He no longer needed one nurse to take take care of him and only him. In the NICU one nurse would take care of several babies. This means that Devin did not need such intense care and that he was getting better. We were excited since that was another step closer to going home. At the NICU they said that Devin was strong enough to try to take him off the ventilator. It was not until 4/19/05 did he finally come off of the ventilator after many attempts. He did go on CPAP which just supplied a constant flow of oxygen through his nose. This was also a big step. Since the Ventilator breathed for he, now he was breath on his own with a little help with oxygen supply. We were so happy to see tube after tube leave his body. Now all that was left was the oxygen and feeding tube. The doctor decide that Devin was strong enough to try to feed from the bottle by the middle to end of May. He was able to take about 1/2 an ounce of milk, but we noticed he would vomit almost every time he finished eating. The doctors were concerned of his swallow and wanted him to get tested. They did a swallow test and found that his swallow was great it was the pooling in his throat that was making him vomit. The feeding tube was making the milk to stop half way down and pool. The more Devin drank the milk would just come back out. The doctors decide at this point that he needed a G-tube. The G-tube would go from his stomach and out the abdomens. This would enable Devin to drink easier from the bottle. Once the G-tube was placed on 5/31/05 they told us that he would be able to come home after a couple days of healing. We were so excited finally an end. Than the unexpected happen. He developed an infection in his wound on his chest. We thought goes figure. We have one foot out the door and something else happens. The surgoens had to open the chest wound about 1 inch long and 3 cm deep. The wound had to heal from the inside out. On top of learning to giving 13 meds and giving milk through his G-tube we had to pack his wound. Our first thought was ," WE HAD TO DO WHAT!" We were scared to pack Devin's wound with gaze, but we learned to do it for Devin. If that is what it takes to get him better and home than that is what we had to do. After his antibiotic treatment the doctors said Devin was free to go home on 6/9/05. We were happy but also nervous. The happiness over took the nervousness and we took him home. We had him home for about a week this time. We were packing his wound several times a day, he would scream every time. It was heart wrenching. Our neighbors would pound on the wall because he was screaming so loud. Then he got a fever and we went back to the hospital. They brought in all kinds of people to look at him and after about a week in the hospital they figured out he had a bone infection in his sternum which is why the infection was coming back. See they had just been treating him for a surface infection each time and this was much deeper. So theytook him back to the operating room and opened his chest again this time it was 3 inches long, 1 inch wide and all the way to the bone. They had to put a PICC line in but this was the beginning of a new problem. Since Devin was so small and had had so many IV's, PICC's, and Central Line's they couldn't find anymore viens to use. After several people tried to place a PICC they told us it was to dangerous and noone wanted to try again after a couple days a nurse decided to try again and it worked so back on the antibiotics he went. This would be a six week dose to get it out of the bone.They decided to try a new healing therapy on his wound since it was having such a hard time healing called a Wound Vac at first we welcomed this. His wound appeared to be healing faster but it creates problems of it's own. Devin broke out in a rash from the wound vac that was very painful to him. They let us go home again but it was very short lived the PICC line clogged twice and the home health nurses thought it was to dangerous to try to clear it again so back to hospital we went. No one would even think about trying to place another pick until the surgeons came and said that they would try in the operating room. It took a few hours but they got one in his neck. Nobody was comfortable with us going home with a line in his neck so we waited. We thought we would be there the entire six weeks but the nurse who got a pick in the last time was back at work and she was able to place another pick. They also decided to stop the wound vac treatment and told us that we could come home but we would have to pack his chest again. This was better than spending another month in the hospital. So we did what we had to do. It was a rough month or so until the wound began to close dramatically. By around August his wound was about 99% closed and things began to go better for awhile. We were getting promising signs of a possible recovery.