Kody's update..
The trip out to his neurosurgeon in Orlando went pretty uneventful. Except for traffic being held up a little by an upside down truck, the road trip was F*I*N*E fine.
Dr. Gegg took his time and really reviewed all of Kody's scans, past and present.
He showed them to us and carefully explained everything.
What an awesome Dr., let me tell ya.
He does see lots of scar tissue and that's OK, because he couldn't believe what a huge surgery Kody had in October, 2004 and how large his tumor was at the time.
He saw two small suspicious spots that showed up on his present MRI.
They are the shape of tumor but they didn't lite up with the contrast like tumors do. So, rather then think negative and assume they are tumor..we're going to take the wait and see approach, which has always worked for us.
Shands liked to scan {MRI} Kody every year.
Dr. Gegg feels more comfortable with every 6 months, and so do we.
Two things we will carefully be monitoring for the next 6 months are..
The two new spots and his voice problems.
Dr. Gegg feels that it is very possible that he is collecting fluid in his ventricle when he lies down, however, at this moment he isn't going to recommend the surgery to replace his shunt with the one way valve. The reason being is that right now, the chance of infection is too great and unless the headaches become very, problematic..we don't want to chance an infection to that magnitude, which would leave Kody 10 days in a hospital bed with strong antibiotic IV's flowing through him. Plus, he'd feel mega crappy.
If Kody's headaches become worse and start to interfere with his school attendance or his general quality of life..then definitely for sure..we will go back and get that valve placed.
Dr. Gegg also mentioned that if ever, at any time, tumors do appear back in his brain..then he would be an excellent candidate for "Gamma Knife Surgery".
I don't really know a whole lot about it, but from what I hear it is way less invasive then brain surgery.
Soon after we got home, we received a phone call from Dr. Barr's nurse practitioner.
His EEG results were read by Dr. Barr and unfortunately they did produce abnormal seizure activity in his right frontal lobe.
Since his VP shunt is in his right frontal lobe..it's not all that uncommon.
So, he'll have to stay on the anti seizure medicine, Keppra for...well, who knows how long.
The good thing is, Keppra has no side effects on him..so taking it isn't a problem at all.
We go back to see Dr. Barr on the 22nd of this month. Not only for the seizures..but also to find out if he has any answers about Kody's voice {which BTW Dr. Gegg feels may be mild paralyses of the vocal cords...helped by speech therapy}, and his eye/facial tics.
Other then that...all went well. We really like Kody's new Orlando doctor's. They have answered all of our questions and concerns. Having Kody looked at by a new fresh set of eyes has definitely worked out great. :0)
Leaving ya'all with a snap of my two youngest hellians..trying soo hard to look tough and finding sooo hard not to laugh while looking all tough. :0)
Have a great day everyone!!!!!
Love, Kim
4 comments:
Praying hard those darn little blobs aren't tumours. And thank you for the pic of the little lizard thingy with its red throat piece showing. When we were on holiday in Florida in May I kept seeing them and seeing them flash their little red - whatever it is - and my family thought I was seeing things because not a single one flashed at Sandy or Kaly :) Love and prayers for you all.
Hi Kim and all,
Don't you just love it when doctors take the time to give you enough information to feel informed. I hate, really hate, it when they just give you the minimum and then tell you what they are going to do about it! Ummm, ok, didn't mean to rant - I guess that was just my way of saying I'm glad you had a good doctors' appointment!
Joshua's tumor has made a comeback - urggh. His doctors say he is also a good candidate for Gamma Knife Surgery. I like the fact that it is less invasive. Josh's response was: "Hey, cool, I get to do something different!" Ummm, ok!
From one mom to another,
squeeze those kids tight!
Trueda
www.caringbridge.org/visit/joshgooding
Glad to hear Kody is in good hands. It's always good to get other doctors' opinions. Too often they get lackadaisical and fall back on things. It looks like these new doctors will stay on top of things.
Hey "K" family. It's been a long time since I have signed. I have been busier than I've ever been in my life. I do read every day sometimes twice a day. Kody-I LOVE your hair!!!!!!!! It rocks! It looks so awesome in black and white photos. You are getting so BIG. I think it's been about 6 years that I've been following your story. I miss that cute skater look you used to have. =( Kim maybe you could post some photos of Kody and Kolin when they were younger. Kaysha too. She has grown into a beutiful young woman. My daughter is almost 10. My son is 3 1/2 and I don't want them getting any bigger!!!! Love reading the blog. I look forward to reading what all of you are up too, especially YOU Kim! Have an awesome day. I love you guys. Try to be good!!!!!!! lol.......
Post a Comment