Talbot 4 + 3 More: Sweet Kinsley

We may be the only people who have ever taken a baby to the ER for the rhinovirus...

Let me start at the beginning. First this is my disclaimer. I am not a medical expert, or even a medical novice. If I have misspelled or butchered any on the diagnosis or treatments I'm sorry.

Kinsley has always been a noisy breather, we figured she was just fat or had a minor anatomical problem she would outgrow. We recently took Preston to an ENT with some similar symptoms and the insurance was unwilling to pay for a scope to find out what the problem is. The reason they don't want to pay, is the procedure is rather simple, but is only done at Primary Children's Hospital with such young children. Primary Children's Hospital is out of network. So we figured if they wouldn't pay for Preston they wouldn't pay for Kinsley. I have been planing to discuss this with our pediatrician who we have a wellness visit to see on Wednesday.

Everything was going well. Kinsley seemed to be a little noisier than normal and I was just waiting out the storm to get her to the doctor. Then last Thursday night I was putting her to bed. She seemed to be struggling to breath just a bit. I unwrapped her and she fell right to sleep. I thought "good thing I'm seeing the doctor in 6 days, I will have to talk to him about this." I put her in the vibrating chair (she was not doing well when I lay her flat) and went to bed. I was awakened at 330 am Friday morning by what sounded like one of the babies vomiting. It was a cough followed by a gag. I got up to check and clean up whichever baby had vomited. I first checked Kira and Preston who were in the crib and they were both sleeping peacefully and dry. I leaned down to check Kinsley and noticed that she was really struggling to breath. She was also dry, but I picked her up and held her under her arms. Her eyes were closed, her skin was pail and clammy. In my half sleep state I thought "she can't breath." and then I said "Jared, she is having trouble breathing!" He immediately jumped out of bed, and was at my side. He took her into the living room where he tried to wake her from her daze. He then grabbed his stethoscope and listened to her lungs. She was still not responding well and struggling to breath. We called Jared's folks who came right over to watch our other children, and we headed up to Ogden Regonal Medical Center ER.

By the time we got to Ogden Regonal, she was doing well. Super noisy breathing, but she was smiling and playing with me. Half way there we almost turned around and went home. Once we got there they took us right back. They listened to her and watched her. It was a mystery. They gave her a breathing treatment called racemic epinephrine, and a dose of decadron, both steroids. Then we had a chest x-ray. Everything came back normal, the breathing treatment seemed to have helped maybe a little. She was still noisy and was having chest retractions, but she was not breathing so fast. We were discharged and decided to follow up with our pediatrician that day.

I called the pediatricians office and our normal ped was out of town until Monday. I thought about waiting but decided not to because we were headed into the weekend. I didn't want to end up in the ER again. We saw DR Hildebrand, who I really like. She listened and gave Kinsley another dose of decadron. She watched her and decided she thought it might be Laryngotracheal stenosis, which is a broad spectrum of problems that means basically that there is a narrowing or softening of some part of the larynx. In order to find out the exact problem we needed to see an ENT and get her scoped. (refer to our earlier problem with Preston.) we decided to have a fight with the insurance.

Because it was Friday afternoon I tried to call the ENT, but the office closed before I could schedule an appointment. Kinsley did relatively well Frday night and Saturday. I had a haunting feeling the issues were not over. She would not sleep because she could not relax. Her chest contractions were fluctuating between worse and better, her breathing noisy. All these things had not changed. But what could we do? Nothing until Monday morning. So we put the kids to bed. Before we settled down I had Jared film her breathing. We had a humidifier on her, and he gave her a blessing. We climbed into bed but I couldn't relax. I decided to check her. Before I got out of bed I could hear she was in more distress.

She started couching and choking. I pulled her out of the swing and sat her up right. She was so noisy and her chest retractions were so bad. I resolved I would just hold her and watch her until morning. Then I would switch with Jared so I could get some sleep. As I was sitting there holding my baby who was struggling to breath, Jared got up. He said "Well let's take her in." but what are they going to do? Where are we going to take her? The insurance only covers HCA facilities and there are not any in the valley that take children her age.

We decided to take her to St. Marks. That is where they were born, and would be a shorter ambulance ride to Primary's. We walked into St. Marks about 1:30am Sunday morning. They knew immediately they would transfer us. But they gave her another round of racemic epinephrine. This time it helped a ton. She relaxed and was breathing great. They did another chest x-ray. The nurse thought she might be a little dehydrated because she poked her twice and couldn't get an IV. They sent us out without one, and she still doesnt have one. By 2:30am we were loading into the ambulance. I got to ride along and Kinsley kept looking at me like she was a little frightened about where she was. Then she had a bad cough attack and vomited all that was left of her 11pm bottle from the night before. She was breathing hard before the ride was over.

At St. Marks trying for an IV

Kinsley in the ambulance. It is not clear because the ambulance was bouncing all over the place!

We checked into Primary Children's ER, where they gave her another round of racemic epinephrine. She was finally quiet. Then she got another dose of decadron, which she threw up. They left us in that room until almost 6am. It was terrible. There were 3 chairs and a small sized gurney. No where to take a nap, and nowhere to put Kinsley. They wanted to monitor her but said they didn't have a bed in the Rapid Treatment Unit (they call it an observation room). Finally they moved us at 6am.

Sleeping Jared holding sleeping Kinsley in the ER

Now we are in the RTU. There is a large cage looking crib, a semi comfortable chair and a couch made into a bed. That is where Jared and I have been taking turns sleeping. The ENT came in and talked with us. He wants to scope her next week, hopefully after some of the swelling gets under control. He started her on acid reflux meds just to keep some acid from further iritating her throat. They did a virus check where they shoved a cotton swab up to her brain it seemed! And did another x-ray, this one of her throat. We finally have some answers. She came back positive for rhinovirus. Before you freak out realize that rhinovirus is the fancy way of saying she has the common cold. We took her to three different ERs and in an ambulance for a cold. Fantastic.

In the RTU

They also think she has what is called Tracheomalacia. This would be the underlying cause and why a simple thing has made her breathing so difficult. They could see in her throat x-ray that when she breaths out her treacia collapses on itself causing the noisy and difficult breathing. They will have to scope her for sure. Tracheomalacia is a sub category of Laryngotracheal stenosis, so we might be getting somewhere.

For now they want to hold us again overnight, just to watch her and probably give her another dose of racemic epinephrine. Then we have to wait out the rhinovirus before they can scope her and make a definitive diagnosis. If it is Tracheomalacia we will just have to monitor her until she outgrows it. There are things they can do, but not unless it is effecting her eating/gaining weight, or her breathing long term, not just while she has a cold.