The Sweet Things in Life

Today was Rylee's first puke-less day. She has been constantly vomiting which has been progressively getting worse since August 30th. On August 30th she weighed 11 lb, 4 oz. Today, she weighed 11 lb, 3 oz. A whole 20 days later and she has lost 1 oz. In Rylee's case, 1 oz is a huge amount. Remember back to February, March and April when the IC docs wanted so desperately for her to gain an ounce a day? Now she's not gaining anything at all.

She was hospitalized for Influenza A & B, RSV and pneumonia on August 31st. Her doctor was Dr. O who had never seen her before. As it turned out, she has Adenoid virus which is simply the common cold. She did have a slight case of pneumonia as well but tested false positive for Influenza A & B and RSV. However, the vomiting persisted. Dr. O didn't seem too alarmed by that.

On Friday, September 11, after constant vomiting all day, I called the MA help nurse. Dr. C was on call and after talking with him, we decided that the best plan would be for me to take Rylee into the ER in Platteville for at the very least some fluids to treat dehydration. After 2 hours in the ER, she was sent home with the understanding that we were to go to Mercy ER in the morning at 8:15 for an UGI procedure. UGI stands for upper gastrointestinal. Dr. C had a theory that the place where her stomach meets her small intestine wasn't functioning properly. She had to fast from midnight to 8:15. She was given Barium to drink while there were xrays being taken as she swallowed. She was rolled on each side. The test result came back as normal. Therefore, the problem of vomiting continued unresolved.

The following Monday morning, Sept. 14, I took her in to see Dr. C again to check her for dehydration as she threw up constantly on Sunday, including all over me at her party! On Thursday, Sept 17 I took her to meet Becky, MA dietitian. We met Dr. O in the hallway and he was hanging around to take a peek at Rylee. As it turns out, this will hopefully be the best peek ever. He was in a hurry and pretty much only got that she has been vomiting quite a bit.

Last night at around 9:30 I got a call from Dr. O's home phone number. He said he had been looking throw Rylee's chart and came across her head circumference. He was shocked by how much her head has grown in proportion to the rest of her body. He wanted to see at 8 am. His thought was that she had excess fluid on her brain which was causing headaches resulting in her vomiting.

Kris and I both took Rylee and Troy to this appointment. Turns out that that was one of the best decisions also. Rylee was taken over to Mercy to have a CT scan done of her head. She also had labs drawn. We watched the CT scan video with Dr. O, which was also his first time watching it. It was quite obvious that she had an excessive amount of fluid. Dr. O called the UW hospital and sent us on our way up there.

Today, Rylee was diagnosed with Hydrocephalus. On Monday, our sweet little girl will be put under anesthesia and have a camera insert in her skull. There will either be a hole put in the 3rd quadrant in her brain or a shunt from her brain to her belly.

The neurology resident didn't think that the vomiting had anything to do with the Hydrocephalus. In 8 days, her head has grown 3/4 cm. Her skull isn't fused together resulting in a large soft spot. Since, it isn't fused, it is growing instead of building up with pressure.

After the 8 am appointment, we got in the car to head home and pack a few things (we were told that she would have shunt put in today initially but that planned changed when we got there). After everyone was called and all our affairs were in order, I looked at Kris and said, "I'm just going to cry now." "Ok", he said and rubbed my leg as I sobbed. I cried for her. I cried for me. I cried for Troy. And I cried for Kris. But mostly, I cried for her. I cried for her future. I was strong through all of the calls and had my 60 seconds to break down.

I sit here right now with my food uncooked for tomorrow, the bars I planned on making not made, because I am too busy with the enlarged head with hair only on the top in the crook of my elbow and my arm wrapped securely around that tiny body feeling her breathe, watching her eyes flutter under those tiny purply pink eyelids and listening to her little squeaks. I wonder what she is dreaming about as she talks out loud and smiles...I can only hope that it's me.

I am not looking forward to Monday. I will be a mess for sure. I can't imagine having to leave her as she is wheeled into surgery and having to just sit there. I will long to hold her hand and rub her tiny foot.

So tonight, she will sleep with me. She will stay snuggled up right where she is until the sun comes up.