Update

Life has kinda been like riding a roller coaster the last couple of days. Just when I think things are going good, they turn bad.

After Wednesday night's trip to the ER, I called and talked to the nurse in the morning and she reported Kristin was fine. Then I called and talked to her teacher to find out more about the details of her day on Wednesday. I also called the hospital to talk to Kristin's developmental Dr. and see if he thought she needed to be seen. I have questioned whether she can see at all or not and just had many questions as to what is going on with her. The Dr's assistant called me back and she let me tell her all that has been going on. She asked some questions and then started telling me about a disorder called, "autonomic storming". It is something found in a small percentage of patients with brain injuries. She described it as being a reaction to the autonimic nervous system which controls our breathing, body temperature, heart rate, etc. So these storming episodes occur when the autonomic nervous system loses control and causes a massive discharge of neuro transmitters, such as adrenaline to be released from the CNS. It can cause reactions such as, elevated temperatures, profuse sweating, increased heart rate, high respiratory rate, agitation, increased spasticity and large pupils. The more she talked it seemed we finally had a diagnosis. She said she would talk to the developmental and neurology Doctors and coordinate an appointment for us to talk to them. I felt relief that someone could finally tell me what the problem was.

About 3 hours later, the nursing home called to say they were sending Kristin to the ER because she was having some very severe symptoms. Her heart rate was very low, her respiratory rate very high and her oxygen saturations were low. To make a very long story short - she is again admitted in the hospital with almost identical symptoms to a month ago. This time though, her heart rate continued extremely high for a very extended period. I have mentioned the "storming" many times to every Dr. who is caring for her, but they have to run all the tests and treat the symptoms she is exibiting. Of course, once again, they are focused on finding and fighting the "infection" she has. It is so very exhausting to tell the story over and over and over and over and try to get them to understand why I think she is having the autonomic storming and not an infection. Time will tell. I hate that this has happened both times right before the weekend, because nothing much gets done over the weekend.

I just made copies of three different articles from the internet about this condition so I can try to learn more. I know it is not a good thing and I fear what is ahead for her. There is a battle inside of me as I fight to keep my emotions in check. I do not doubt that God has a plan and that His timing is perfect. But I still struggle with seeing my child suffer so. I begged Him all night to let her heart wear out and stop. Her heart rate was between 185-200+ for over 12 hours. I don't know how she can take that. And that is only a small part of what she went through. The scripture I was led to today was Psalm 27:14 "Wait for the Lord; be strong and take heart and wait for the Lord." (Thanks Susan!) Please keep us in your prayers and I will post updates as I can.