O what a day!
Well today most certainly had its highs and lows. This morning we met with Dr. O'Toole. She assured me we were not going to leave before the problem is solved. I now have a better understanding of what exactly is going on. First off, C is a ways away from the NG tube. She told us rather than trying to hurry and get it out, we need to look at it as if it were our friend. It is helping us get C to the weight she should be. However, she is not gaining much for weight so there is another problem here. She is orthostatic pretty much every morning. She is also hypometabolic which means she has slowed metabolic activity, and her body has attempted to survive a deficit in calories. In response to starvation, body temperature, heart rate, and blood pressure decrease. To help her she needs the prescription of calories to the tune of 2614 a day. Once established, and comforatable taking in this much without the help of the NG tube, she will begin the Day Treatment Unit or DTU. This treatment is and outpatient clinic involving counseling, schooling and therapy on many levels, mostly with groups. This treatment for Cadence will be a minimum of 8 weeks.
We are here for a long haul.
I felt better knowing this information and yet overwhelmed at the same time. The bottom line is, she is going to get the help she needs and deserves.
Every meal today did not exceed a 50% completion. Every meal utilized the tube. Her spirits were high though. Definitely wanting to move around, she managed to get herself into some trouble at school with not listening and getting up out of her chair to walk around. Not so much allowed on bedrest. After lunch she returned to school and had a much better afternoon where one of her teachers and her worked out a code of him tugging on his ear if she stood up. Rather than verbally calling her out in class and having her get defensive she sees the ear tug and remembers to sit back down. When class was over I picked her up and wheeled her down to the Starlight Lounge where the activity of the day was tying and stuffing personal fleece pillows. After that we got to return our previous rentals of games and movies and check out new ones. We went back to our cell, I mean room and played Battleship. I won. Not that that matters! Eventually she started complaining her tummy was bugging her. I sympathized because mine had been bugging me as well. Just then Nurse David came in with a late snack. She informed him she was really not hungry. "Food is our medicine Cadence. Either you eat this or you will get it through your tube." She opted for the tube then asked him for a bucket. She was sweating so I asked him to take her temp. He said she was fine and got her a bucket and headed down the hall. By 7:45 my child was asleep. RED FLAG for me. She had not even taken her medication to help her sleep yet. She tossed and turned for about 3 hours. Her eyes opened and found me, then she quickly asked for the bucket. Man was that gross. especially since the NG tube now was sticking out her throat. I knew right away that our night was going to be a long one. She was given medicine to calm her tummy and within an hour they were in to give a new tube. Cadence blew me away. She did SO good. It took 2 tries since the first one got pinched in the back of her nose. She said she couldnt do anymore. But she did. She was amazing. I am in awe of my baby girl. She is growing every day. Both physically and mentally.
29862 N Tatum Blvd. #2038
Cave Creek, AZ 85331