Tuesday, September 8, 2009 12:34 PM

 

So her VNS surgery is going to be postponed – Becca has another Ear infection. Doctors don’t like to perform surgery on folks who have an active infection. So the new surgery date is Sept 29th.

Oh well.

We also are getting a referral with ENT to hopefully get Ear Tubes. So hopefully we won’t go through this – ear infection after ear infection this winter.

***

On another note

I know I’ve mentioned Mackenzie aka Z a few times over the past couple years.

She lost her battle with Cancer

Her caringbridge update this morning read

Z’s earthly journey has come to an end. Snuggled in Tricia’s arms, she died shortly

before midnight. Z spent her final days surrounded by those she loves. Please offer

prayers of gratitude that she is now at peace.

 

I can honesty say that Z was one of the most amazing people I’ve ever met – either child or adult. She touched many lives and I am certain that her spirit will live on forever in the people she touched. Thank you Z – for making David, Becca and I smile on so many occasions. We will not forget you.

 

Saturday, September 26, 2009 7:01 PM

 

Well, we are still a GO for the VNS surgery on Tuesday. Rebecca is still healthy as of today. We had our appointment on Friday with the ENT. The doctor was really nice and is going to talk to Dr. Grant and see if she can’t arrange for the few minutes it takes to put the tubes in to be done on Tuesday when Rebecca is already getting the VNS surgery. This will be GREAT since it would mean one less sedation. The ear tube surgery literally only takes about 5 minutes, and she doesn’t foresee any problems with them letting her have a few minutes time to tag onto the surgery. Please pray this works out! Pray the ear tubes mean less ear infections for Becca this winter. She is such a trooper with so many things, yet ear infections are REALLY painful for her. Hopefully the VNS surgery will be outpatient if all goes well. The settings on it will have to be slowly turned up over the course of time, so we won’t know anything for a while.

 

Tuesday, September 29, 2009 1:27 PM

 

Surgery is over and we’re back home. Everything went well. Rebecca is pretty sore, which is too be expected. We’ve got to be careful when we move her. The device is at a low setting for now, but it is on. In two weeks we’ll go back in, and they’ll start turning it up, to a more effective setting. She did get the ear tubes as well!

Friday, October 9, 2009 10:08 AM

 

Yesterday was our first of many appointments to turn up the VNS – we’ll be going in monthly for a while to keep turning it up to find the right setting. Nothing unique to her case or anything – that is just how it goes. We probably won’t really know much for 6 months I think Dr. Mikati said. We are getting the hang of using the magnet when she has a seizure. Not that we have to use it on each and every seizure – since the magnet is really meant as an alternative to diastat. For times when she has a prolonged seizure or a bunch of clusters. but we can also use it when we see the Aura before the seizure. In essence there isn’t a wrong time to use it – we can’t over use it (unlike medicine)

 

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