Sunday, April 13, 2008
You have got to be kidding me!
The weekend was shaping up to be quite an uneventful weekend ,which is fairly hard to accomplish with a family of eight. However, it did appear we were going to skate by with only minor blips on the Needham radar when , wham! You guessed it, way too good to be true. Luckily catastrophe was averted. Barely. And yes it did involve Zoey. I would be posting way into the wee hours of the morning if I gave you each minute detail so I will try to be as concise as possible and hope I have kept your attention long enough to see you to the end of the post. It all involves her ATCH medication. You know, the one that costs $25,000 dollars a bottle which often lasts 1 week depending on dosage. The one that in late fall was about $1,ooo a bottle but demand and greed sky rocketed the cost. The one, that by the grace of God, an agency by the name of NORD helps people such as ourselves pay their 30 % co pay for each week over the five week course. Yep, that medication. Well, in Zoey's case she is on low dose protocol so a bottle for her should last 25 days. I will not bore you with the math on that but suffice it to say we could comfortably get by without a refill till mid this week and that's with a dose increase. I am the one who draws the meds and administers them and by this past Friday I was not comfortable with the amount that appeared to be left in the bottle. Mark and our wonderful nurse contact with the specialty pharmacy assured me we were alright. By Friday I was pressing the issue and by last night I was freaking! No way would we even have enough to see it through the weekend. Panicked to say the least. Our nurse angel gave us her cell phone number and after hours of back and forth communication, Zoey's medication is, as we speak , on a UPS Critical Air plane and we will have it in the morning. Phew!!! Now the million dollar question? Why was her bottle short almost 2mls. That is a huge discrepancy and come tomorrow there will be an investigation of sorts as to what happened. I have created a multitude of scenarios over the course of the day and none of them were pretty. In hindsight, when we look back at the shipment we received at our pediatricians office that first day, we have some serious issues. Tomorrow we will receive the new package and we will be able to compare each shipment and any inconstancy's we think might have occurred, will be much easier to decipher. So, that's the long and short of it. The story will continue to unfold over the next few days so we will keep you updated. As far as Zoey goes, she is definitely feeling the dose increase, I think. Sometimes it is so difficult to figure out what exactly is the problem with these little ones who can't use their words but are obviously very, very unhappy. Cranky is an understatement to say the least. It doesn't help that she is working on another tooth in a big way. And my good little sleeper has decided to change that up a bit. About every other night she decides to wake up literally every hour. Lovely. Thank goodness she nurses and goes right back down. I am reminded at this moment of something one of my girls said recently, she said "Mom, your post are so long , do you even think anyone even reads them?" Well, I concurred with her on the lengthiness of them and I thank those of you that are able to read them in their entirety without needing to take a break for a cup of coffee mid way through!