The next morning around 5:40 am I packed the diaper bag and made a pot of coffee. Mat and I sat in silence for about 10 minutes before he went to clean the snow off the windows of the car and start it. Caroline had already been fed and dressed. I got her into her snow suit and car seat and we hit the road. Omaha, Nebraska is about an hour and forty five minutes away from where we live in Sioux City, Iowa. We are so blessed to have such an amazing children's hospital with an amazing pulmonology team so close to where we live!
The ride down to Omaha was a silent one for the most part. Mat and I kept telling each other she was fine, everything was going to be fine. She would get the help she needed and we wouldn't have to worry about anything else for a while. When we got there we met with many different members of the pulmonology staff. We met with a doctor, a couple different nurses, a social worker, a nutritionist, and a few others. I don't remember who all we met that day since so much information was given to us. It was overwhelming to say the least...
The staff was so helpful and welcoming. I couldn't have been happier with them! They answered all our questions and provided us with MANY learning tools. We were told that Caroline had a homozygous f508 delta mutation, the most common among CF patients. They explained that she wasn't gaining weight because her pancreas couldn't function to break down and digest food. So she was put on zen pep, an enzyme. We were to start with only half of a capsule with every feeding and to supplement 1/8 tsp of salt with her feedings every day.
They explained how she needed a vitamin supplement and put her on source cf drops. 1 ml a day. They demonstrated how to give Caroline her chest percussion therapy by hand since she was too small for a vest and stressed the importance of her getting the treatment 2 to 3 times a day along with her albuterol inhaler. (She was so small the doctor was worried about her not breathing in enough of the medicine with a nebulizer)
Before they sent us on our way they took a throat culture, blood work, another sweat test, and x-rays of her chest. The doctors had us feeling a lot better then when we had first come in. We had all of our questions answered and then some. They were very hopeful that we found out so soon in her life.
The ride home was a lot better than the ride there. Mat and I were excited to get our little girl home and pick up her prescription for the antibiotic she was put on for her cough. We got home around 7 pm that night and went straight to bed after eating, feeding Caroline, and giving her the antibiotics and a CPT. around 1 am she woke up to eat. I gave her some enzymes and the apple sauce like they showed us and fed her. She went back to sleep only to wake up 20 minutes later puking. She repeated this process around 3 am, and again at 6 am. We called the hospital and they told us to take her to the ER in our city to see if she was stable enough for us to drive her to the Omaha hospital.
The ER doctor ordered an IV line for her because she was so dehydrated. After about an hour they decided that she would need to be transferred via ambulance to the children's hospital. At this point I was a nervous wreck but tried my best to stay calm for Caroline. I'm sure it would have been very different if I didn't have my husband there for support...
Mat and I decided I would ride up to the hospital with Caroline in the ambulance while he went home to pack closes for us and then drive up to Omaha in our car. I don't remember much of the ambulance ride. I was so scared I just couldn't stop shaking. Mat must have been driving like a mad man because he beat us to the hospital! He met us in the emergency room waiting room. We had to wait for a room to get ready since it was January and the hospital was almost full.
And thus began Caroline's first hospital stay.
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