A great Nurse Practitioner came on duty last night and solved some problems. Haley had one IV in each foot. Each time medication was pushed through the IV she screamed in pain! The day shift nurse observed this, checked the IV and said it was good each time. The NP decided if it hurt her that much lets take it out. She still has one in the other foot and all they only needed one. She also told the nurse if she screams and cries for 10 minutes immediately inject the stronger medication. Jeremy, being there at night was so happy this NP was willing to change some things to lessen her pain. She seemed to be more of an advocate for Haley then anyone else had been. She didn’t want Haley to be in pain like she had been experiencing.
Haley’s pain causes her to thrash around in bed and cover her head with a pillow wanting to be somewhere else. She yells at anyone in the room and especially if they want to touch her. “Get out!” “Don’t look at me!”
I am exhausted! It is emotionally hard watching Haley cry, scream, kick, yell because she is in pain and because she does not want to be there. I can’t fix it. I am being asked what do you want to do about her medicine, but I’m just her mom. I know she is not herself. I know she is in pain. I do not know the medicine side. I wish they would have a plan and stop giving me options expecting me to choose which one is best for her when I really have no clue how the different medicines would help her.
Haley has not wanted to wear the hospital gown so I let her make that decision. Today I brought one of her princess dresses to put on. She was Cinderella all day. She wanted HER clothes so that made her a little happier. She made her food choices today which consisted of strawberries, raspberries and fishy crackers. Of course she had her apple juice constantly with her. The sippy cup and her “hospital” blanket are her coveted items.
She has been watching Tangled over and over again while she is laying in bed. I did get her to let me hold her as I took her for a short walk. She could only last a few minutes then she had to lay back down. A few times later in the day she would sit on my lap for a few minutes at a time. This will be something we need to work on.
The drain came out this morning horray! Jeremy said it wasn’t very pleasant to watch the tube being taken out and seeing how much tube was inside her head. I’m glad I missed that part. I thought it would hurt to lay on the left side, but she does it now so I guess not. That is improving.
The Doctors are continually amazed at how well she is doing. We haven’t noticed any red flags in her verbal or motor skills which is a big relief. Emotionally….well I don’t think her being stuck at a hospital where she cannot exercise her will is a good place to evaluate that. We will wait and see if her personality has been affected at all.
Each day I am more and more thankful for family who are taking care of my other 4 kids. There is no way we would have been able to be patient with Haley while taking care of everyone else. Thank you all for the help!