Saturday, June 24, 2006

McCreary family heart story

Declan John was born July 22, 2004. The only real traumatic part of his birth was the fact that he fractured his collarbone during the delivery. The doctor said that occasionally happens with larger babies; he was 9 pounds, 9 ounces. Other than that, he was the picture of perfect health!

In early 2005, Declan developed his first case of croup. From that time on, he would come down with croup about every 6-8 weeks. By May they had given us a prescription for a nebulizer to use as he needed.

This went on until January 2006…sometimes the croup would be bad enough to take him to the doctor, but most times if I gave him a couple days worth of treatments he would come out of it himself. However, in January he got real sick very suddenly. He was throwing up and had a fever on Monday. Tuesday was no different so I took him to the doctor. As our family doctor was listening to him, he asked if we knew Declan had a heart murmur. Very adamantly I said no. He said that it didn’t seem to be that significant of a murmur so maybe it was just because of the fever. Declan’s 18-month check was the following week so we made a note to listen for it again at that point.

When we returned the following week, the murmur was again noted. It still did not seem very significant though and when I asked him what he would rate it, Dr. Hunziker said he didn’t think it was more than a 1 or a 2. Then he asked if we wanted to see a pediatric cardiologist; he would refer us if we did. I was fairly certain that this was simply an innocent murmur, but told him that, yes, I would like that appointment as we might as well know what we were looking at.

The first appointment we could get was the end of February. Then it turned out that the doctor wasn’t able to come to Spencer that day so we were rescheduled for March 3rd in Sioux Falls.

Declan got sick again the end of February. Fortunately there was no vomiting this time, but the fever was back and he had congestion and cough. I made a frantic appointment with another local doctor because our family doctor was gone that day. She suggested keeping the appointment in Sioux Falls, he might not be completely cooperative, but should be fine. She also stated that she could hear the murmur but did not believe it to be rated more than a 1 or a 2 either.

Mark took the day off to go with me. We told each other that we had nothing to worry about. It took this long to find a murmur so it couldn’t be that bad. Most murmurs are innocent. Anything else we could think of to cover our fears.

Because of Declan’s health that day, they weren’t able to get quite as good of a look at his heart as they would have liked. He behaved nicely; he was just icky feeling. My job was to keep him occupied with the movie and suckers. I tried to listen to what they were saying, but I was concentrating on Declan. Mark said he could tell when the atmosphere changed in the room and he knew something was wrong. They started pointed at a spot and kept checking it from different directions.

When Declan had had all he wanted of the echo, we went back to the room. Dr. Kutayli started explaining Declan’s heart condition, speaking slowly and quietly. He said Declan had a hole in his heart between his left and right atrium, Atrial Septal Defect (ASD). At this point, it wasn’t bothering him, but once he hit his teenage years it could cause significant problems for him. I just held Declan and cried silently. What did I do during my pregnancy? Did I do something wrong? Why is this happening to us? As if he read my mind, Dr. Kutayli stated that this just happens with some children. There was nothing I did during my pregnancy to make this happen or that could have prevented it.

He stated that he was born with this condition and other symptoms masked the real problem. Once we started being seen for the different respiratory problems, those were what the doctors focused on. He drew us a picture and showed us how the blood flow in a normal heart works, how it goes from the right side to the lungs, back to the left side and out to the body. What Declan’s was doing was going from the right side to the lungs and because the hole was high in the wall, instead of going into the left side and out to the body it was being shunted back to the right side of the heart when it came back from the lungs. This was contributing to his respiratory issues as well.

Dr. Kutayli stated that he would not be doing the surgery and that he wanted to refer us to Mayo in Rochester. He stated that surgery needed to be done in the next couple weeks. The doctor at Mayo would check Declan out, make sure he agreed with Dr. Kutayli’s opinion and most likely complete surgery the following day. He would contact Mayo right away and they would get back to me by the middle of the next week.

While we were in Sioux Falls, Dr. Kutayli advised us to speak with a pulminologist to discuss a treatment plan for Declan’s croup. After discussing Declan’s problem with Dr. Veloira, he concluded that, while he may in fact have recurring croup, he also had asthma. Since we needed to clear up the cough and congestion that Declan was currently having, strong medications were prescribed for him.

We spent the weekend trying to get our lives in order for the upcoming surgery…I made another appointment with our family doctor for Monday. When I made it into the office, Dr. Hunziker had Declan’s file out and we combed through it to see if we had missed something important at any point. Nowhere did we see anything about a heart murmur. There were notes from others doctors in there as well that specifically stated “No murmurs present”. Dr. Hunziker stated that he had gotten the notes back from Sioux Falls and read that it was a large hole. All we had been told was that it was a hole. Dr. Hunziker didn’t give a size; I don’t think one was written down. Declan still wasn’t looking good from his congestion the previous week so we were to hit the antibiotics prescribed hard to get him better for surgery.

Wednesday of the same week, Declan STILL wasn’t any better. He was clingy, tired, cranky, just not himself. I called the doctor’s office again and Dr. Hunziker was out for the day. Another doctor prescribed a cough medicine to go along with his other prescriptions.

Thursday I had two of my other children in the doctor…one for an ear infection and the other because she was sick. Turned out a negative on the ear infection but a positive for Influenza A in our house. At this point, EVERYONE (including Declan) was put on Tamiflu. The PA who saw us that day, went to double-check with Dr. Hunziker that it would be all right to put Declan on this medicine. He told Dr. Hunziker that I was looking a little stressed out, to which Dr. Hunziker said he wasn’t surprised.

Friday night I was up most of the night with Declan. He had a fever and his cough was still very bad. Mark woke up early and went into work at 4 a.m. since he was awake. By 6 a.m. I couldn’t take Declan’s pain any longer and called the emergency room and told them I was bringing him in. After a series of tests it was determined that he had pneumonia on top of everything else. We were admitted to the hospital by 8:30 and spent 5 days on IV antibiotics.

We knew at this point, surgery would be a no go, but Mayo still wanted us to come up to do some preliminary tests on Declan. After we were discharged from Spencer on Wednesday, Mark and I drove to Rochester for another echocardiogram and an ECG. With the pneumonia, they were not able to do the echo sedated, but wanted to get a look at what they would be dealing with.

Dr. Hagler showed us the hole and said that he thought it was maybe about an inch in diameter. After studying the different views of Declan's heart, he said that the hole didn't seem to be the only problem.

First, the right atrium was larger than the left atrium. This was due to the hole and the fact that the right side was doing so much more work. This problem should correct itself within a few months of the surgery.

Second, the Atrial Septum was actually deviating to the left instead of being straight. This is contributing to the right side being larger as well. He thought they may have to take this out completely and replace the entire wall.

Third, it seemed that the veins were not going where they needed to. He was having a hard time telling from the echo, but the pressure didn't seem to be right in his heart and the veins looked like they were in the wrong spots.

Dr. Hagler stated that we would need to come back in a couple months, sometime in May and we would hopefully be able to do the surgery at that point, after they did a cardiac catheter and a sedated echo

We returned to Rochester on May 17th for tests, including the heart catheter and sedated echo. Everything progressed smoothly and surgery was confirmed for May 18th. Declan came out of surgery with no problems.

After surgery we were told that when they did the heart catheter, Dr. Hagler found the mitral valve has “issues”, basically instead of two flaps for the valve, one of the flaps is divided. What that comes down to is that there are three flaps working properly instead of two. This means we will have to do a few more check ups as time goes on. It could possibly mean another surgery at some point, but as long as his valve continues to function normally we will not worry about it.

The reasons this was not fixed during surgery is very simple: 1-you don’t fix something that isn’t broken, and is functioning normally; 2-Dr. O’Leary said that sometimes when you try to fix too many things at once, it can make the repairs not work as well as they otherwise would.

The good news is that Declan’s heart and lungs are now functioning normally. We have returned home and had a follow up visit with Dr. Kutayli in Sioux Falls. His echo looks good and we will have another check up in August.

The doctors in Rochester also mentioned that by fixing the heart problems, we could be fortunate enough that it will cure the respiratory problems as well! At this point, we are on medication for the asthma alone, no heart medications. Hopefully we will be able to go off the asthma medications soon!

As of today, when I’m writing this story, my precious Little Man is one month from his 2nd birthday. At one point, I wondered if I would get to celebrate this milestone, even though I knew his heart condition was one with few complications. We are so fortunate to have him with us!

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