Usually I'd like to keep this blog positive, uplifting and, in general a brag-fest about my wonderful daughter!
Today I decided to get real. This is how the day started at 5:45a.m.
Mary had a rough morning and woke up crying. Her g-tube medicine port had popped open and she was covered head-to-toe with foul-smelling Peptamen formula. Gross. She was so upset. :( And probably hungry, since several ounces of formula were on her bed instead of in her stomach. I think she must have had a lot of gas or something and pushed the g-tube open.
There was formula all over her bed, the crib bumper, her hair, her clothes, and her trach ties were soaked in it. She was coughing and crying so hard, she was also gagging a bit. I just wanted to pick her up and comfort her, but she was still connected to her monitors and feeding pump - and needed suctioning. She was also a disgusting mess.
Cleaning her off took a while, amidst suctioning her trach constantly. I took Mary out of her bed and cleaned her on the floor as best I could with baby wipes and wet washcloth. She was trying to cry and go back to sleep at the same time. I set her up cuddling in a blanket and hooked back up to the rest of her feeding on the floor while I dealt with the bed. She never did go back to sleep, though.
Once her feed was finished and I felt she was awake enough, I threw her in the tub and gave her a good soak. She smiled big appreciation for that! She hates to be messy.
We are doing better now, laundry in and new sheets on the bed. I am a bit worried about her, though. Gave her extra formula during the day today. I am not sure her tummy is feeling okay or if it is her back. I have wondered about this for a few days now. When she is in a good mood, I will have to try to talk with her and get an answer via DynaVox. Mary has told me and others about body parts and how she is feeling on a particular day, so hopefully this will work.
Other news: We have these g-tube pads that are pretty awesome! They are cute and just the right size and washable. I don't have to tape anything to Mary's belly or deal with little 2x2s falling out of her clothing anymore. We call them a little bling for her belly!