As a patient of the Children’s Hospital I feel like I have a right to express how I have felt during my stay there. Every day has been a challenge for me. I am here fighting with all my heartand soul to survive to live. I have a great passion for living so please doctors and nurses understand that yes you see many patients everyday but believe me I am different. I may not be able to tell you how I feel but I express many things in my eyes and different gestures I have.
The nurses have been good to me. Some much much better than others. I understand that you cant fall in love with every patient nor be my best friend but I do appreciate that you talk to me, that you tell me good morning and that you treat me with the utmost of gentle care as being in this bed hooked up to so many devices is not very comfortable. I ask that if you are bathing me to please cover me up right away. It is very cold in here and I dont like being cold. Please keep my bed upright after my bath because I can’t lay flat on my back due to my reflux. If you see I am sleeping and you know I have not slept and have been agitated all day please please dont wake me to change a diaper that is not really wet. You can bend the rules sometimes! I also request that us sick kids would really appreciate it if you would keep your voices down when talking amongst each other. It is hard enough as it is to go asleep with all the alarms, lights, and many different sounds.
I know my parents have been hard to deal with sometimes but they love me and know me best. Please listen to them when they explain to you how important it is to mix my seizure medication correctly. My Valporic Acid levels have dropped and my seizures have increased due to not properly administering my medication and this new infection I have!
The respiratory therapists have done a great job on keeping the secretions out of my lungs. I do have one request though when you are coming at me with masks to cover my face and hoses to stick down my nose and throat please let me know that you are here to help me not torture me. I get really scared when you dont tell me what you are doing and the trauma of having to be aspirated is bad enough as it is.
Doctors thank you for the wonderful attention you have been giving me and for doing such a great job of getting me better. I only ask that you do not under estimate me. Yes I am special, my brain almost completley smooth, but I have not earned the name little bull for nothing. Just wait and watch I am determined to defy the odds you have given me. NO TRACHEOSTOMY FOR ME!
With all my sincere gratitude and thanks,
Malia