Tuesday, March 1, 2016

Rolling with the punches

Life is all about rolling with the punches.  Lately, punches are exactly what have been coming at us.  Sam and I were so nervous about Sonzee's g-tube procedure that when things went South on Friday we felt like we had lost our abilities to breathe.  We had been back and forth with our decision to get the gtube all week long.  I honestly almost cancelled it two times during that week alone.  I have been comparing the experience with a flight cancellation.  When you miss your plane or your flight is cancelled and you are placed on another, there is that brief moment where you might find yourself wondering, "which one of these flights is going to crash?”  Maybe you are not as neurotic as I am, but I have definitely had that thought when my flight plans have changed.  The thought that both Sam and I wondered was, "Is this G-d's way of saying we shouldn't be getting a gtube for Sonzee?"  Did we just dodge a bullet or is it more of the message, "Now isn't the time".

One of the twists of our weekend in the hospital was that we finally got Sonzee to have her EEG that we have been essentially begging for since she weaned from Topamax.  I am pretty sure her epileptologist was holding off giving the Ketogenic diet more of a chance to do its thing prior to looking at her brain's background.  We all had an idea that she had hypsarrhythmia, I had sent some videos of her most recent spasm episodes over to her doctor last week, and it was decided on Thursday that following the surgery, she would have an EEG, and then after the surgery site was healed she would most likely be starting the prednisolone.  Either way, this road was going to be traveled.  The order just threw us off our game.  

I have been emailing with her epileptologist since Sunday and as soon as the bear is over her little cold, she will be starting 40mg a day of prednisolone for two weeks.  After the two weeks, she will have a repeat EEG and if the hypsarrhythmia is gone, she will begin a four week wean.  If there is still hypsarrhythmia then she will continue another two weeks at 60mg of prednisolone a day and then have the four week wean.  Our team has decided it is more imperative that we treat the hypsarrhythmia at this point vs waiting until after a gtube has been placed and healed.  Due to the dose of the prednisolone, we are unable to do the gtube simultaneously with the prednisolone as her immune system will be depressed and healing would be challenging.  We are working on scheduling an NG tube placement for the duration of the steroid treatment, and then we will reschedule the gtube placement afterwards.

She will remain on the ketogenic diet; we just will not be as concerned about her ketone levels needing to be high.  We will also be receiving some stage one food recipes so we hope it will help with the anticipated bear-like appetite, as well as administering her steroids.  I am sure the punches will continue to roll in as we deal with some of the ugly potential side effects of the high dose of steroids.  

Sam and I are at peace with our teams decision.  We feel that we have done our best with all of the medical decisions we have made for the bear along the way, and even though we were unable to "outsmart" the hypsarrhythmia, we gave it our all.  Some things in life are just unavoidable no matter how much you try your best.  

We are praying that she only has to complete this treatment once, and that we will successfully rid her of these ugly spasms.  We are praying that she will have as few side effects as possible from the treatment.  We are praying that she will have a honeymoon period from all of her seizures during or after the treatment.  We are praying that this experience will turn out to be one that we praise and would do all over again if we were asked.

Thank you all for your unwavering support and love, and thank you for helping us continue to roll with the punches.

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