Shaylee's Tubie Story

I just found out it is feeding tube awareness week and it has been so fun for me to read other stories of "Tubie" kids. My oldest child has a g-tube with a Mic-Key button. Shaylee, who was born with cleft lip and palate and other brain abnormalities and special needs, gets most of her fluids from her g-tube. When she was a baby she did quite well on her special bottle, but when she started eating solids, she almost quit drinking completely. When she was about 18 months old, the prosthesis in the roof of her mouth came out and she wouldn't drink at all. We had her hospitalized for dehydration for several days. We were finally able to get her prosthesis put back in and she went back to drinking the little bit that she had been drinking. A few months later she quit drinking again and I was afraid she would get dehydrated again so I took her in and they did some labs on her. She had a sodium level of 195,which is extremely high, so they ended up life flighting her to Primary Children's Hospital where we stayed for a week. I felt like they thought we were starving her or something. The only thing they could really come up after testing  her for everything under the sun, was that she doesn't FEEL thirst. I think she feels hunger, but she never gets thirsty. So we ended up putting the tube in her stomach where we give her fluids from a pump every night. She is quite low in her weight so the pedia-sure helps with that too. We feel so blessed to have this special angel in our home and know that she has a great purpose in this life because we have had several close calls where she could have died. People have been so kind to her and we appreciate that so much! We live in a great community where parents teach their children that every one is special.