Prayers Please

After much discussion and prayer we have decided not to do steroids. We are seriously concerned about the aggression side effects that are fairly universal, not to mention the sleep disruption. Remember all that biting, etc. from last fall? Oliver is already on psychiatric meds for his aggression/biting/etc. and I'd really love to follow through on our plan to taper those off, now that he has stabilized. It seems like throwing all our progress into jeopardy isn't wise.

We still want to pursue the VNS. We think this is the best option despite the potential for not being able to MRI Oliver's kidneys in the future. The risks from the VNS seem less than the steroids.

I called Dr. Mikati's nurse on Monday and never heard back from her. Frankly, I feel like that is unacceptable! I called her again today and she answered (thank God!) and I am hoping we can get some help. Sigh.

He also insisted that we drive 5 hours round trip for an hour long EEG so he could have his "own data." We just had a great EEG in Boston and to go through all that with a three year old just doesn't make sense to me.

Also, we didn't get another appointment with him until late August at which point I was given no indication if we would be admitted or not (for the steroids we are no longer doing).  Would I be coming for an in-office visit or be admitted for steroids. It is kind of a big deal to be admitted for 5 days! Seriously, I need to know what is going on and how to plan!

I have also spoken to Jan in Boston (LOVE HER!) since we are getting no communication from Duke. I hate when I am in this place of getting direction from two places at once. It makes my stomach hurt, but at least I know I have the fine folks at Mass General in my back pocket if worst comes to worst.

I have made an appt. to go to UNC on Wednesday to give them another try. The lack of communication at Duke has always been a concern (even in 2011), but this week it has been frightening.

I just got a call from daycare saying Oliver had a "major" seizure. Apparently, he "spit up" during the seizures which can be dangerous. We may need to give the rescue med if this happens again or start him on something else. What a way to start the weekend...


Please pray for us as we try to shuffle all this around. I feel like a hot mess! I am sure you can tell (so sorry!)

The nurse practitioner at UNC is a female and so I have high hopes she'll be a great fit for us.  Maybe she will also be open to suggestions from Boston? Please join us in praying for this appointment at 2:00 this coming Wednesday! We desperately need someone in NC, who is at least in the same ballpark as our Boston team; who can respond quickly to requests (something UNC docs always did).

I need to trust someone in NC with Oliver. I need to know they "get it" like the folks at Mass General. I can only pray Carolyn Zook will be that long awaited professional. With the exception of Dr. Duhaime (Oliver's neurosurgeon in Boston) I will probably pray for Carolyn more than any other medical professional. I so need her to be "the one." I know the other mamas of kids with special needs understand this...how important that connection is....

Thanks for putting up with this unedited post :)