Danielle Rose Magee
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Danielle has had quite a time since her wonderful arrival. She has been in the hospital four times since birth. The first time was due to Jaundice and a Heart Murmur. The second time was due to breathing difficulties. The third time was due to a fever. The last time was due to surgery.
During her first hospital visit, we found that she has a VSD, which stands for Ventricle Septum Disorder (I think.) It’s a technical term for a hole in her heart. Since then the hole has almost completely closed. It is now only detectable by echocardiogram.
The second hospital visit was a waste of time, energy, and money. We took her to the emergency room because she was having problems breathing. They gave her an Albuterol treatment and took some chest x-rays. The emergency room doctor obviously wasn’t experienced with x-ray interpretation because he compared the x-rays taken that night and the x-rays taken from her previous visit and tried to scare us to death. He thought that her heart and lungs had changed shape (a possible bad side effect of the VSD) and that the cloudiness around her lungs was fluid, so he admitted us. The doctors and nurses wouldn’t listen to me or believe me that I couldn’t lay Danielle down for more than 10 minutes without her going into a breathing fit. I held her all night long so that she could breath comfortably. They sent us to another hospital 45 minutes away for a pediatric cardiologist to look at her x-rays and check out her heart. To sum it all up, it was a bad exposure on the x-ray and her heart and lungs were fine. They sent us home without fixing the problem we went to the hospital for in the first place!
Well, the third visit was because of a fever and blood in her stool. We believe the fever was from an upper respiratory infection. The blood in her stool was from an allergic reaction to a Soy-based formula. Miraculously during this third visit the nurses offered to give Cliff a break one night and took Danielle to the nurses station to watch. By the next morning the nurses had a full page of notes and written documentation of her breathing fits. Finally Danielle had a breathing fit in front of someone that knew exactly what to tell the doctor. From the symptoms the nurse gave the doctor, he suspected Reflux. We went down to Radiology and she had a Barium Swallow done. The test showed that she had Reflux. I found it quite hard to believe that she had this because she hardly ever spit up, let alone threw up like most children with Reflux do. From here we went to a specialist 45 minutes away and told him about her breathing problems and feeding issues. He was the first doctor to truly listen to us about her breathing problems. He said that her symptoms sounded much more than just Reflux, so he performed a test there in the office and we found that her right nostril was blocked.
Well, that discovery eventually landed us a trip to an ENT doctor. She sent us to the hospital to get a CT scan done. That’s when they saw the full extent of her nasal problems. She has a Choanal Atresia (blockage of her nostril) in her right nostril and her left nostril is extremely narrow as well. The ENT doctor wanted to wait about two years before doing any major surgery to repair her nostril, and until then we were to dilate her nostril three to four times daily until the surgery could be performed. Danielle’s pediatrician highly recommended that we get a second opinion by a new pediatric ENT specialist in town, so we did. His solution was a lot more aggressive but thankfully we trusted and listened to him or we might not have found her most dangerous problem to come.
May 5th – She had surgery to repair her Choanal Atresia. During the surgery the doctor found that the first ring of her trachea is one-third the width it is supposed to be. In fact the hole he placed in her nostril is larger than the opening in her trachea! Due to the severity of her problem the doctor performed a tracheotomy. It was found that Danielle has Laryngomalacia and Subglottic Stenosis. We were in the hospital for five days learning our daughter all over again!
Our lives have been turned upside down and inside out due to this latest surgery, but Danielle has been sleeping more peacefully than she had her 12 weeks prior to the surgery and that’s worth it! We have also found that we have many more friends than we ever believed since this has happened. We have been truly blessed in more ways than one.
- What Storms in Life Are Getting You Down?
- Email Danielle's Mom at: sherrie.magee@verizon.net
