We need to stop going to the hospital! This is meant to be a daily journal and it has now turned into a weekly journal. We took Brylee back to Primary Children's on Sunday for excessive drinking and urination. Of course I was freaking out thinking I had another Type 1 Diabetic on my hands. Brylee literally drank a 32 ounce powerade every hour on Sunday and went through an entire box of 44 diapers! I was so freaked out that I checked her blood sugar which came back 66. This caused me even more confusion so I called her doctor. Her doctor said it might be something called Diabetes Insipidus and that I needed to take her straight to the ER and that I needed to pack for 5 days. So 30 minutes to pack and a 2 hour drive with 5 diaper changes and we were finally there. There did some blood work on her and confirmed that she has Diabetes Insipidus. This disease is caused one of two ways: 1. Your kidneys stop working properly and stop accepting the ADH hormone that tells your body to maintain your water intake. 2. Your pituitary gland in your brain has stopped producing the ADH hormone. Brylee has number 2. It's technical name is Central Diabetes Insipidus because it is located in her brain. There are several things that cause this to happen, one of which is a tumor in the pituitary gland. Considering Brylee's history of brain tumors her doctors were very concerned that it was a second tumor. They wanted to do an MRI.
There have only been two times in my life that I have been so nervous and anxious that I have thrown up. The first time was after her very first MRI in March. I couldn't hold anything down for three days. The second time was Tuesday on Wednesday. I was so nervous for that MRI. I couldn't think about anything else. Wednesday morning finally came. We took her downstairs for the MRI. They put her under general anesthia once again and whisked her away. I thought I was going to lose it for the two hours she was gone. Every time anyone in scrubs walked by the waiting room I had a flash back to March 6th and my heart started racing. I was so high strung that I had to run to the bathroom. I have come to hate that waiting room. I hope I never have to see it again.
The doctors finally came and took us to Brylee in the recovery room. They were still going over the MRI I had no news for us. We got to take Brylee back up to her room and waited for another hour. When they finally came into our room to tell us the news I thought I was going to pass out. I was so filled with dread. When they said there is nothing but good news I immediately jumped up off the couch and screamed "Yay!" They proceeded to tell us that there was no second tumor and that the radiation had damaged the pituitary gland causing the onset of the diabetes. They then proceeded to tell us that her original tumor has shrunk significantly! It hasn't disappeared but I wasn't expecting it to have vanished. I have been so thrilled the past few days. Although there is so much relief and excitement I can't help the dread in the back of my mind. I know that this demon will start progressing again eventually we just don't know when. So everyday I watch and make sure she can still chew and swallow. I watch her when she sleeps to make sure her eyes still close all the way. I listen for her night terrors in the middle of the night or the scream when she's in her car seat and she thinks she's falling. Every time she looks at me I tell her to smile to make sure each corner turns up in that beautiful crescent of hers. I tickle her sides and feet to make sure she's still sensitive. I have her squeeze my hand to make sure she still has the strength. I am being optimistic but every time I feel some of the doubt and fear I make her completely each one of these tasks so I know she is still okay and that she is still mine.