Thursday, December 17, 2009
Great Day for Mikayla
It has been rough the last few days. Mikayla had debridement last Monday midnight. I was very upset. I initially decided I will stay in the room but I had to leave because she started screaming and nurse said would be best if I am not there. I was not happy when they started pilling her skin before full effect of sedation meds. I was upset with the resident and asked her to start making phone call to get some answers because I will not watch my child in that situation. Finally the burn surgeon decided to send the team back and just do self debridement and wrap her. She then felt better. I voiced my frustrations to the docs and other staff. I told them that I felt abandoned , alone and helpless that night. Told them that I felt my BMT team was not there to provide the care my daughter needs. I told them that, regardless of what the dx is of her skin, that she should be treated at optimal comfort and that Children's Mercy failed me. They listened and now so many teams are working on her case. All day Monday was rest day since she did not really fall asleep until almost 7 am. Was in a lot of pain. Tuesday, debridement and dressing change happened in the OR. Was still in a lot of pain and some bleeding both legs and a lot of raw areas. Wednesday, much better. A lot of her skin on Upper body is healed , some healing and legs still raw with bleeding. But everyday , it is getting better. New skin is growing. Almost looks like baby skin.
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I feel so sad for what you are going through. I know it is not easy being the parent of a sick or disabled child. We are the child's voice and yet so many times our feelings get overlooked, as do we. I am proud of you for standing up for yourself and your daughter! That takes courage. God bless you and your family. Know that God is on your side † I pray His Peace and Love be with you always.
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