This weekend brought about a very scary circumstance in which Abby had to physically pay in regards to her seizures. Last Thursday I called NY to discuss her medication and if we needed to decrease or increase them, we were 4 days from running out of the Sabril so I needed to call in and order it that day! Dr. Devinsky was not available, so I spoke to his his nurse and she told me he wanted to increase the Zonagram and keep her Sabril dose the same. She offered to call in the order for me if I would like her too... I thought this very kind and so trusted that she would follow through. There in lies root of Abby's suffering! I think we as humans would like to be able to trust people and take them at their word, that they have good intentions, but they are human and mistakes happen... So Friday rolls around and I have two Sabril packets left which come that evening, I would have no more! In the afternoon I started to get a little worried that I was not hearing from our pediatricians office where the it was to be shipped, so I called and they had not received anything. I immediately called the pharmacy in NY and PERFECT timing, everyone had left 5-10 min. earlier! The gal who answered the phone, replied, "No, I can't do that!" when asked if she could look on the computer to see when it was shipped, THEN she HUNG up on me!!! What???? So let me place the setting that this was all happening in. My sweet friend, Corie had just dropped off her little ones for the weekend so the house was a buzz and our bible study group was due to show in an hour and I had yet to get me and my house in order. So, after a moment or two of freaking out, Corie helped me breathe as she made dinner for our kids, while I called the on call Doctor at NYU and left a message for him to call back. Then I called my pediatrician again pleading that someone help me!!! The clock is ticking away, I was on what seemed an eternity hold, pacing back and forth, heart palpitating waiting & FINALLY, after listing to Indian flute music my pediatricians nurse picked up my call and proceeded to take a MESSAGE with her M-O-L-A-S-S-E-S, gum smacking... "it's FRIDAY guys and gals and I want to go home" attitude... Oye, I was so frustrated and lets just say my tongue was was too! After that debacle of a call, Dr. Silvers the on-call doc in NY called & I finally got to speak with someone who had compassion for the reality of my situation! Unfortunately, there was nothing he could do, except increase the dose of the Zonagram in hopes that it would take the place of the missing Sabril.
Well Abbs had two massive seizures this weekend along with all the other little ones that she normally has. Twice she has screamed out in sheer pain... Her eyes stay closed for 10-12 min. as she cries inconsolably for about 5-8 min and then she instantly falls asleep for about 10-15 min. waking up to her happy self. I don't even know how to share how emotionally hard this was to watch, feeling helpless!
Yesterday I fought on the phone all day with the pharmacy and nurses as NO ONE WANTED TO TAKE OWNERSHIP OF THIS GREAT ERROR! Everyone was pointing fingers at the other and ABBY was the one that paid greatly for this mistake! I found that on the 11th the Sabril was never ordered, via the pharmacy, they also told me that I should have done a follow-up call, I retorted quickly, "I did and was rudely hung-up on!!!" I was also told by the pharmacy in the same conversation a few min. later that they did get a script faxed, but the nurse that faxed it should have called to verify it verbally and that's why it was never sent! So they were sending it out overnight and guess who got stuck with the overnight express bill! Today I have been on the phone for two hours playing phone tag with Dr. Devinsky and JUST missed his call on my cell, tried to call him back and the office is closed for lunch! UNBELIEVABLE! It's still continuing, I really need to tell him about Abby's seizures and ask what I do next with the meds?!?
Oh where is that warm sand and far off beach when you need it... I know, I know... its FAR OFF!
But, I must say that I have had much time to reflect on this situation, and in looking back I can honestly say that through it all, I knew beyond a shadow of a doubt that she would be fine. I got it... I get it... I grasped completely with 100% assurance that God was/is in control. It was neat to think to myself, "Hey I feel such a peace regarding her, wow thank you Lord for showing me this!" It's so easy to say that when your not walking in a trial, but I love that God revealed to me that I got it while walking deep in this trial... (Faith in God, not faith in faith!)
I also got that He was/is purging my still un-tamed character in dealing with people within the trial. Yeah, that ones ganna take a little more work... Oh the UPS truck just arrived and I just got my Sabril, Yeah!
My Shmabadoozie, she is fine, I pray that these two seizures didn't do any further damage! If ya think of it, please pray for all this to smooth out as I work on nailing down Dr. Devinsky and her medication! Maybe there is a hidden blessing yet to be revealed in this somewhere.. His providence is yet to un-fold!
I love how the Lord works, don't you.... Ya have to walk in the fire to see Him resinate!
"O taste and see that the LORD is good; How blessed is the man who takes refuge in Him!"