Today has been a difficult one for me (Kerry). We had our monthly visit with our epileptologist at Phoenix Childrens today. First, we are sure God led us to this man in particular and the story is worth telling again. The day after we found out Reese would probably develop seizures, Mario got a pop up ad on his computer from Phoenix Children's Hospital, announcing the opening of the new Epilepsy Unit with Dr. Jeffrey Buchhalter's name and picture. If that wasn't goose-bumpy enough, that very same day, our friend, Dawn Olive, who is a nurse at the Mayo Clinic in MN emailed me with the name of a wonderful doctor she used to work with at Mayo, Dr. Jeffrey Buchhalter. So, for quite some time we have known that we were going to follow his lead with little miss Reese.
Today we were told that our insurance will not pay for us to see him, nor will they cover her seizure medications. I now understand the bad rap insurance companies often get. Without getting too emotional...do they even care about the needs of the patients? It really is hard to believe. We have been blessed with another option...because of Reese's diagnoses, we have the opportunity to see doctors at Barrow Neurological and it would be totally covered, including prescriptions. Dr. Buchhalter told us that the epilepsy doc is top notch over there and we would be in great hands. Helpful, but still very difficult to leave Dr. B.
Now for the biggie...Reese is still having way too many seizures each day--about 4-7 clusters of spasms each day. The meds are not working and the doctor wants to start on a much more powerful drug. Sounds great for treating the seizures, but the side affects can be very serious as well. He says he is much more concerned about the consequences of leaving the seizures untreated than he is of the possible side affects...but then again, he is not the parent.:)
Although we don't have a lot of time to waste, we ask that you pray with us over this huge decision. Please ask God to give us wisdom, clarity, peace. There is no easy answer in this situation but we are willing to do anything it takes to give Reese relief, rest...and a smile once again.
The name of the drug is Depakene and the concerns are toxicity in the liver and bone marrow. It is so hard for me to even type this...but the death rate in children in her situation is 1 in 500. The discussion we had today centered around the guilt of omission versus commission. Only God can direct us down the right path, so please join us in prayer over this decision. Please share with us if you hear the Holy Spirit leading you to do so.
More than anything, we covet your prayers for healing for Reese. Healing for the seizures, for her brain, and for every cell in her sweet little body. We believe in the awesome power of Almighty God and know that He can heal her if He chooses. It certainly is the desire of our hearts!:)
With love and appreciation,