Monday, April 13, 2009

Weekend, Epi appointment, Koolio's visit to Harwood, and...

First before I do anything, I want to say how thankful I am for the shed blood of Jesus Christ and his resurrection. I do not know what I'd do without the Lord. He's my strength and my hope.

This weekend was a toughy. It's super hard when Hannah is sick on the holiday's which happens quite often unfortunately. She just had a rough time this entire weekend. All week I kept telling David that something was amiss. She just didn't act "right" and neither was Koolio. They were both "off". Around 2 a.m. Friday morning she began the silly talking out of her head stuff so I got up and checked her. She was running fever but the talking out of her head thing is always a prerequisite to a VERY high temp. So, I gave her ibuprophen and David decided he'd sleep with her just as an added precaution. He had just let Koolio out to go to the bathroom and Koolio was hanging with one of the boys in the living room when she had a seizure. I heard it on the monitor. David was with her. Koolio beat me to her room. The first seizure went over 5 minutes so we administered diastat. She finally came out of it and in less than 10 minutes she began having more. We called 911 and they took her to Hill. In transport she quit breathing on them and they thought they were going to have to intubate her. She began breathing on her own again and the decision was made to send her to Cook's. She did fine in the helicopter and when David and I got there she was sleeping peacefully. They did a work up and everything came back o.k. and she was stable so we got to bring her home on a klonopin regiment and decreased diastat dosage. She slept o.k. Friday night with me and then on Saturday began coughing horribly and has continued to cough horribly since. But no more TC's since Friday.

Today we met Dr. Malik finally. We saw him fleeting at Cook's during one of Hannah's admissions but not one on one. Today she had an appointment with him. I felt confident that he was going to try to get on top of what is going on with Hannah. He has ordered a bunch of tests and has made a couple of referrals to others to get some other needed information. He ordered blood and urine today. Did I ever tell y'all that I have the bravest child on the face of the earth. We got the blood work at Cook's and she got up in their purple chair and let the lady do whatever she needed to. They brought in a lady to help distract Hannah but it didn't work. She just watched everything the lab tech was doing. The lady stuck her twice and Hannah didn't even flinch. I was a basket case and my angel was just looking at what they were doing. I don't know if she was trying to show Koolio what a big girl she was or what! Anyway, he also has ordered a metabolic work up with a metabolic geneticist as well as he wants her to be seen by The Child Study Center and their developmental pediatrician. He's ordered a 24 hour video EEG and an MRI. He is changing her meds to Depakote and getting rid of keppra, zonegran and lamictal. He has several meds we can try if depakote doesn't work. He also said that depending on how depakote goes and what he finds with all the other tests we may discuss a VNS. So, once again the next few months will be hectic. I'm really overwhelmed today for some reason. I mean, I wanted someone to get to the bottom of this if there is a bottom. I sure hope there is. I'm tired of doing things in vain, and Hannah deserves a break. Enough is enough. At any rate, I really think I like Dr. Malik and am feeling confident that someone is working to help us help Hannah.

Koolio also made a trip up to Harwood today. Without Harwood we'd not have gotten Koolio. They are a wonderful bunch of people that have been a blessing to David and our family. Of course he showed his stuff. He prissed. It was hilarious. It was interesting to see him constantly looking to see where Hannah was though. He has to keep an eye on his girl. I think he made an impression. How can he not!?!? He's such a handsome fellow.

I need to get dinner going. Please keep us in your prayers. We still have so much goign on and need the strength to get it all done. Thanks for everything.

2 comments:

Susan said...

As I read your posts about Hannah, my heart goes out to you and your family. I can't even begin to imagine the emotions that you go through concerning her and the rest of your family.

I am volunteering with an organization called Operation Kids. We are working to help ease some of the burdens that medical conditions create on families so they can focus on being strong and united. I am hoping you will share your story and experiences about Hannah and her medical condition.

We want people who are in a similar situation as yours to know they are not alone, as well as for you to know hear about others that are dealing with the same stresses and problems.

By sharing your story, you will not only help others in need, but also let people know about the struggles that families go through. Informing people that are not directly involved in a situation like yours can get them to want to help and donate. We are raising money through donations to give to charities that aid families that are burdened with the financial struggles of medical conditions.

If you are willing, please submit your story about Hannah and the experiences you have gone through.

Visit http://operationkids.org/collinraye/ to submit your story and learn more.

Thank you and I hope Hannah's new guide dog Koolio is helping and fitting in nicely.

Susan Williams

Hannah said...

Susan, I'd love to and I will. Marcey