This time last week, we were celebrating Easter. The Easter post is coming soon. Today we are celebrating being a reunited family.
Cora woke up Easter morning around 4:00 with a fever and ear infection in her right ear. Both girls had tubes put in on the 11th. This allows us to see drainage when they have an ear infection. We started with antibiotic ear drops immediately. Cora was fussy the rest of the day. By the time we returned to Greensboro, around dinner time, Cora still had a fever, drainage, and was wheezing. Hazel had some congestion but no fever. Cora went to sleep around 9:00 but woke up at 11:30 crying. Papa slept with her in the chair to keep her calm. At 3:00, she still had a fever of 102.7, with Motrin and Tylenol, and was having difficultly breathing. We gave her a breathing treatment at 3:15. By 4:00, her breathing was worse. We called the doctor and gave her a steroid breathing treatment. She was still wheezing but finally feel back asleep.
By 6:30, her breathing was not any better. We gave her another breathing treatment. This treatment seemed to work. Cora was happy, playful, and a little hyper from all the medication. She went to Granny and Granddaddy's house while Mom went into work for a bit, ate a good breakfast, played, and finally feel asleep around 9:30. At 11:30 she woke up wheezing with a fever. We took her to the doctor's office were they determined she had a double ear infection, and they gave her another breathing treatment and another steroid. She was still wheezing when we left the doctor's office but we had done everything we could to that point. At 3:00 and 3:45, we gave her two more breathing treatments. She had been given seven breathing treatments in twelve hours. That is a lot for a little girl to handle. At 7:00, her breathing was labored and she was acting like she was uncomfortable. We tried to get her to sleep hoping that would calm her down enough to relax and breath better. By 8:30, she was in distress, we were on the phone with the doctor, and on the way to the hospital. They took Cora almost immediately, took her to triage, checked her pulse-ox, and took her away to a room within seconds. A team of doctors, nurses, and respiratory therapists appeared at once to help her. Her respiratory, how many breathes she takes in a minute, was fluctuating between the high 60s and high 80s. Normal is 20 to 30. Her blood oxygen level was fluctuating between the 70s and 82, normal is 95 or above. Her heart rate stayed between 220s and 230s. The Respiratory Technician (RT) stayed with her from around 9:00 until we were given a room at 3:00.
She was given another 6 breathing treatments, inhaled steroids, oral steroids, and other bronchial medications. Over the course of the next few days she would de-sat, or drop her blood oxygen level, in the 80s every time she was given a treatment, had something to eat, and every time she slept. Even with oxygen, the doctors and RTs could not keep her blood oxygen level in a normal range. By Wednesday morning, she was on four liters of oxygen at 55%, still wheezing, not drinking, and de-satting into the low 80s. The next step was the PICU. We did not want for this to happen. Instead Cora was taken off all her breathing treatments, except the steroids. Cora was tried of all the doctors and her nasal cannula. She ripped it off her face. Her oxygen levels stayed normal and she was much happier. She knew what she needed. We did have to put her back on oxygen a few hours later but she was free for a little while.
When she was discharged Saturday afternoon, she was still wheezing and de-satting. In fact, she was de-satting while we were signing the discharge papers. The doctors feel she had a virus that settled in her lungs. It may have started with the ear infection. Being a preemie means her lungs are already compromised. We know she has chronic lung disease and a disease called RAD (Reactive Airway Disease), as mentioned in an earlier post. An electrocardiogram was done. It came back completely normal. This means any breathing trouble she has does not steam from her heart. The doctors also feel is has always de-satted at night and throughout the day. It explains why she wakes up from her naps with purple hands, feet, knees, and lips (cyanosis), and explains why she does not sleep through the night. When she was discharged from the hospital yesterday afternoon, she was still de-satting during feeding times and while sleeping. She did not stay for observation because she was not acting sick. Her color was good and she was acting like herself. She was also ready to come home. She would put toys and her blanket in her car seat and kept handing us keys. Cora was so excited to come home. She picked out her outfit and helped pack everything up. She is still wheezing a little bit but she is happy and glad to be home. Most of her medications are still being administered however a few were discontinued at the hospital. We do not want her on too many medications. We do not want medicine to skew her tests.
While Cora was in the hospital, Hazel was at home. She also came down with the same virus. She has a fever, congestion, a wet cough, and is wheezing. The doctor put her on steroids immediately in an attempt to prevent another hospital stay. She is still playing and happy. We think she missed her sister too. When the girls were reunited, they pointed at each other, laughed, gave kisses, played tag, and held hands. It was a great moment.
This week both girls will see their regular doctor, their ENT, their eye doctor, their Audiologist, and a Pediatric Pulmonary Specialist in Chapel Hill. The next two weeks will be busy with tests and appointments. We hope to find a solution and diagnosis soon.
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