Wednesday, September 16, 2009

Our First Trip to Primary Children's Hospital

Written by Haley Lane

The next day we headed up to Primary Children’s Hospital to see if they could do a little more for her. When we arrived, we got the impression that they were wondering why were there. Looking at all the other kids there, I could totally understand why they felt that way. Ari is a beautiful baby and from the outside looked so healthy.

We talked to the kidney specialist and they helped us understand their idea better. They told us she is drinking so much water that there is no room for food. Therefore she is malnourished and needs to cut out water completely. Instead of just formula she can also have Pediasure or milk. I told him that when we take her off water she looks like she is going to die. He reassured me that it was normal for her to look like that and that she wouldn't die. This is what she looked like.
I actually wish we would have got a better picture. Travis said she looked like a concentration camp baby. I thought she looked like something out of a horror movie.The first night off water was pretty bad. She liked doing walks. Luckily in Mt Pleasant the weather was beautiful. Her poor little body shook all night long. She would get mean, she would manipulate anything she could think of to get water. She actually is pretty smart. She reminded us of a drug addict. She finally drank some milk one time after spraying this super salty stuff in her mouth. Then, of course, there was the vomiting. One time she talked Alaina into getting her a drink. She was so happy for that brief moment. She was so miserable and desperate.

Later, one of our doctors said, “Imagine feeling more thirsty then you ever have then multiply that by ten and that was what she was feeling.” How sad. We were in Mt pleasant for a few days. Then we headed back to St George. She was still in lots of pain and had a fever which rose to 104. She also was not backing down on the water intake. And, of course, we were not sleeping. She would take about 15 to 20 min naps and wake up wanting water so bad.
She had another check up. I was jut telling our doctor how there was no change. She still has lots of pain, a fever, won't eat and only wants to drink. Then, as we were getting ready to leave, I said, “Oh, and she has a rash on her private area. I think is from her medicine because it’s a rectal rash.”

She looked at the area. As soon as she saw it her face, it didn't look so good. She was trying to not scare me, but she told me that it could be caused by a fever or a virus but usually it only occurs on the upper body. Of course, we had to get labs drawn. I texted Travis and said man you owe me big. It was his turn and he got out of it again. As I left, we set a appointment for Friday, which was in about 4 days.

On Thursday, on my way to Scouts the doctor’s receptionist called me. She was very upbeat and said, “We have an appointment for Arianna on Friday but we were wondering if we could see her today.” I told her I was doing something, but I would have my husband bring her down. She replied, “Actually we would like to talk both of you. I gulped. That is never something you want to hear.

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