If I could tell a new VACTERL parent any ONE piece of advice its this:
“The single most important thing you can realize is the GREAT importance of pain management.”
It is SOOOOOOOOOOOOO important. The hard thing about pain management with Ky is that her body lies. You can LOOK at her and she looks fine. But inside she is writhing in pain. By 3:30 pm this afternoon Kyleigh was MAXED out on morphine and she was visibly in pain. She was gripping the bars of the baby bed and her toes were crinkled. Her entire body was stiff as a board……. as a mom…… it hurts me. It really does. I feel like I have some kind of post traumatic stress disorder or something because every time I see her get behind on pain management I go right back to February 28, 2007 and the day that I swore I would never go through again.
I made a PROMISE to my baby that I would NEVER let her go through that again. A promise that I fully intend to keep as long as I am breathing. Tonight… in the midst of all of the excitement I told Joe that I had promised her that she wouldn’t have to go through this again.
It took almost 2 hours to get her pain back under control. We went through maxed out morphine, versed to calm her down, Toradol, and finally Benadryl to control the itching… she was still fighting and tense and in pain. We decided that since she was not on the Ditropan that she should probably get a foley cath. That way we would not have to wake her up to cath her. He bladder was FULL. I am more than sure that her bladder being blown up was complicating everything.
I have to say, yet again, how amazing it is to watch Joe care for Ky. He literally stood by her bed for almost 3 hours. The kind of care that Joe gives my baby is something that is only warranted by the sweet spirit that is my princess. I certainly am not worthy of this kind of compassion. We are so blessed…. and truly grateful.
If you are praying this evening… please pray for Ky for rest and comfort and relief from pain. Pray for Joe for patience and understanding. Pray for us for confidence in our decisions, peace in our minds and rest for our bodies.
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You ARE worthy and so is Ky. Never ever stop believing that.
You are in my prayers, as always.
Hey Sweet,
I know you are holding it together well for Ky and that it must be really F$^^%%& hard right now. You are doing a sensational job and it is not one that I, or anyone else in the world would trade. You are such a strong Mummy, so brave and so perceptive. With people like Joe there to help and a team spirit with you and Troy, Ky will improve soon enough to have less meds and be a little happier…even if that does seem invisible right now.
I am thinking of you and wishing everyone over there some peace, rest and patience.
Bridgette