A lot has happened with Taylor over the last couple of weeks. We'll start with the good news....
Actually, it is great news! Taylor had an echo last Friday (the 22nd) and Dr. Hannon said her heart has made significant improvement over the past year. Her left ventricle looked smaller in size and her two leaky valves were almost non-detectable! Her injection fracture also improved from 44% to 60%. He said there was a chance that Taylor's heart could some day heal on it's own. This was fabulous news and Jeff and I were over joyed!!! She will follow up with another echo in July.....
Now for the bad news....
Taylor has continued to have many seizures a day, however over the past month they have increased in duration. Before she might have a seizure anywhere from 5 seconds to 1 minute. Now, some are lasting close to 3 minutes. On Wednesday, Dr. Winchester (her neurologist) ordered an EEG to be performed at Duke University Medical Center. Upon reviewing the study, they saw that indeed Taylor was having longer seizures, as well as abnormal brain wave spikes. This means Taylor's brain is being irritated. Dr. Winchester thinks it is possibly due to the new seizure medication (Sabril) that she started on in late December. The doctor admitted Taylor to the hospital for further observation.
So, the plan is to slowly wean her off the Sabril by tomorrow(Saturday). They have also increased two medications she is already on~(Phenobarbital and Vitamin B-6). Meanwhile, they are also weaning her off another seizure medication (topomax) and starting her on another medication (zonergram). Currently we are waiting on a cardio consult because they also want to start her on a steroid called ACTH for infantile spasms (seizures). The problem with ACTH is it high risk for infections. Before they start the ACTH, they want to start the medication IVIG in order to boost her immune system. The IVIG would need to be given over a 5 day period.
Hopefully, we will see a change in Taylor's seizures and she will be able to go home by Wednesday (February 3rd). Thanks for all the prayers and concern!
~ Tammy
~God Bless
6 comments:
GREAT news about her heart!!!
Sorry to hear about the seizures...hang in there...Taylor has proven herself to be a fighter...she is tough and she will get better! We will be praying for her and all of you as well. Take care and give her a kiss from us.
Love you all,
Misty
Thanks for the update...we will continue to pray for her and your family!
Erin Batts
Much love and continued prayers from PA. Love you guys!
We celebrate with you with every piece of great news and continue to support you and pray for all of you when the news is less than great! Peaks and valleys girl! She is such a blessing and so are you!
Jennifer Santaniello
I am continuing to lift up Taylor and all of you in prayer to Jesus. (Psalm 121)
God bless,
Kate Ramsey
I have been checking in on Taylor since we met a year ago in February. I hope she has stopped having the seizures by now. Please give us an update when you get the chance!
Sincerely,
Donna B.
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