Jessie has been going down-hill lately, as the hydrocephalus continues to get worse. Last week, it seemed like tegretol was calming things down, but now, her episodes are getting more frequent again, even with an increase of Tegretol.
Dr. Carson (Hopkins), Dr. Mathern (UCLA), and Dr. Donahue (Cook Children's) all agreed that we need to go ahead and move forward with surgery to place a Shunt in Jessie's Brain to relieve the increased pressure and build-up of spinal fluid. Surgery is scheduled for Thursday, Aug. 5th at Cook Children's Hospital. Dr. Donahue will be performing the surgery.
Here are a few links if you are interested:
http://www.nlm.nih.gov/medlineplus/ency/article/003019.htm
http://www.umm.edu/ency/article/003019.htm
This video is kinda graphic, but very cool. http://www.youtube.com/watch?v=0h7Xa-Lsnac
Most literature outlines several symptoms of hydrocephalus, which quite frankly, we haven't seen. These are usually things like headache, dizziness, sleepiness, and vomiting. She has really only exhibited some vomiting. She has had none of the other symptoms. We believe that her pressure has built very slowly over the past two years, and therefore, she has been able to deal with it pretty well.
I've outlined the things that we have seen over the past two years, which may be attributed to building hydrocephalus. This doesn't mean that just because your child exhibits these that they may have hydrocephalus, but it may be worth exploring with your child's neurologist.
1.) rocking
2.) nervous hands
3.) hand strumming
4.) tummy episodes
5.) vomiting
6.) biting clothes
7.) hurts when we rub her neck
8.) left bug eye
9.) behavior
10.) ventricle size (obvious on MRI or CT )
11.) nose wiping
12.) lip picking
13,) lip / finger preseverating
14.) general nervousness
15.) bad short term memory
16.) loses focus
Currently, we do not believe that Jessie's symptoms are seizures. That is our prayer. We also pray that the surgeons and staff at Cook's Children's Hospital do the very best that they can to get us through this bump in the road. We pray for no infections, no complication, no over-draining, and a quick recovery.
God Bless,
Cris
Tuesday, August 3, 2010
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4 comments:
Please know that Jessie, you, and all the Halls are never far from our thoughts...You are in our prayers everyday, but tomorrow we'll step it up big time(all the Mahoneys have you on their prayer lists)...The "bumps" are so hard, but try to breathe in FAITH and breathe out FEAR...Please trust me, it helps...
All our love and prayers,
Team Wohlberg
Praying for a good outcome. Can't wait to hear!
Dear Hall family,
I can't even remember now how I stumbled upon your blog but I've been following Jessie's journey since her initial surgery two years. I haven't been checking it as frequently lately as all was well. I'm sorry to now read that Jessie had to have another surgery. I hope all went well. Please now you are all in my prayers. Hang in there, and keep the faith.
All the best,
Carin ~ a fellow reader (& huge Ben Carson fan) from Baltimore
my paryers with you.
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