Baby Harley

[golther]

This is not my baby I am just reposting this for someone else in one of my other groups DancingK.

I haven't been on here in a while because my daughter's been in the hospital. I only have a short time to let you all know what's going on before I have to get back to her. It started Sunday the 15th (2 days after my uncle's funeral... yeah, great month for me) right after we got back from an overnight trip to Prescott, AZ to see my husband's dad (1.5 hr. drive). Harley's left arm was shaking/ spasming. Wierd...

We took her to 'Mindy's Place', a pediatric ER at a local hospital. When we got her in there, her head and shoulders started doing it, too. The triage nurse stopped evaluating the little girl she was with, ran over and asked what was going on. She rushed into the back and got another nurse who called us back and yelled for a doctor and more nurses. They immediately put her on oxygen and held her down to put IVs in her. We were scared & crying, didn't know what was going on! They did a CT scan, then told us they were transferring us to St. Joseph's Hospital (I've been told it's like the #1 hospital in the world for Neurology). I rode in the ambulance with her, and my poor baby was so exhausted, she stopped crying inbetween her siezures and tried to nap.

When we got there, they had a room waiting in the Pediatric ICU (where we've been ever since). They hooked her up to everything and told us they were putting her on a ventilator and needed us to step out of the room. When they let us come back in, they had already put her in the coma. How sweet, they didn't let us tell her how much we loved her first... Anyway, then they told us they were going to do a spinal tap and we had to leave again. When we came back (again) the neurologists had been called in and they asked us alot of questions. After that, we got to sleep.

Long story short, she's been in the medically induced coma for 8 days now because they keep trying to give her brain a rest & 'restart' it (like when a computer freezes and you Ctrl+Alt+Del it) and her brain waves won't quiet down. Also, when someone has a seizure their brain waves 'spike'. She's still have a few spikes here and there, but SOOOOOOOOOOOOO much better than before- she's improving every day, but not as quick as they'd like. The longer someone's in a coma, the more there chances of coming out lessens. They said they do 3 runs, 72 hours each, which will end Thursday. After that the chances aren't worth it and then we discuss our options...

All her tests have been coming back normal (2 CT scans, 2 spinal taps [2nd was just done today], x-rays every morning, blood cultures every 6 hours, and probably more that I can't think of right now) and the neurologists are stumped. No one in any of our families has EVER had a history of seizures, and she was a normal, healthy baby girl. I try to be strong and positive, but inside I'm so scared! I'm asking that you ladies pray for her, ask everyone you know to pray for her, and keep her in your thoughts. She went through 11 straight hours of continuous, intense seizures (5 of which she was already in the coma for) with NO brain damage from it: I know she's being looked after by someone...

Prayer has worked so far, and I am not really a religious person. Please, if you pray, pray for her. If not, keep her in your thoughts and cross your fingers. I may write a journal post about this, too. Also, feel free to re-post this in other groups. We need all the support we can get...

The above picture was taken on my phone, bad quality, but it works. We have to keep all the lights off in her room, no TV, can't touch her (we sneak kisses in every once in a while, though), and can't have too many visitors because it stimulates her brain. Before all this Harley was a happy, healthy girl who loved dancing, beef jerky and the outdoors. Here's a picture of her before all this.Thank you all for your time, thoughts and prayers...

So I have been talking to her mom since this all started with her and She has a website now if you ladies want to check it out heres the link and pass it on http://www.caringbridge.org/visit/harley

[rainstorms]

Aug. 7, 2009 at 12:50 AM

I looked at her carepage. I am praying for baby harley and Hope she gets better!

[roseycheek]

Aug. 25, 2009 at 7:33 AM

I am so sorry that your little girl is so sick.May GOD be with her.