So I’m sorry, but it’s been a while since I posted. Funny how this whole PANS/PANDAS thing just changes every aspect of your life and now you have a new normal. Except that my son has had this most of his life, and well, this has always been my normal. Okay, Stacy just get over it!
If you read my last post, you know all the issues we went through with the infusion company/pharmacy to get IVIG approved. It was a long and frustrating process when it didn’t have to be. The process of actually getting the medicine in our hands has been equally frustrating.
Once we received the approval, I waited for the infusion company to call to set it all up. Of course no call. So I called and left messages and emails with the infusion company for over a week and no return call. I called the doctor’s office and they resent it all to them. When I called the infusion company again, I was finally able to talk to a person.
I had this feeling that I needed to go over every little detail with them. I asked the coordinator to please tell me what was being ordered. And guess what? They had the wrong order. They only “heard” that it was approved and just went with the old order that was on file. No one actually changed the dosage to the new order that was sent to them twice! So more “micro-management” from me. At this point, I feel like I should be paid to be their supervisor!
There was more communication back and forth and it was finally set up. The nurse was scheduled, the copay was collected and I was told the meds would come delivered in a cooler box. It was delivered by courier and luckily my son is home all day because they only gave us 30 min notice that it was being delivered. Ugh…
So I come home from work and “unpack.”
Three boxes. One with a brand new IV pole. One with the supplies. All the stuff the nurse needs like gloves, a sharps box, IV kits and bags, tape, gauze, etc. And the last box had all the meds. Saline, Tylenol, benadryl, and IVIG. This one box was worth at least $25K. I was almost afraid to open it and possibly drop something. IVIG was in multiple glass bottles that were packaged in simple cardboard boxes. They went into the fridge. I decided to empty a drawer and put them in there. More protection from possibly falling out. Not that anything has actually fallen out of my fridge before but I didn’t want this to be the first!!!
His first infusion was spread out over four days. The rest will only be for two days. Because we were not regulars yet, the nursing was pieced together with three different nurses over four days. They were all good and one even had two children with autism and were going to be evaluated for PANDAS.
It all went pretty smooth over those days. He did get a bad headache and the nurses slowed the rate down until he tolerated it better. The headache and feeling “off” did last a few days after the last infusion. At the follow-up with the neurologist, we felt that extra fluids after the infusion would be helpful in the next round and it certainly was.
With the second round, I believed getting it all set up would be smoother. Unfortunately, it was not. I called the infusion coordinator and left a message. Apparently, they switched our coordinator and no one let me know. The new person thought that everything was already taken care of and of course, it was not. She set up the delivery date, took my copay and everything was ready. Except on the day of delivery, nothing ever came. I made several frantic calls and left messages that we had not received the meds. And of course, someone somewhere dropped the ball. Again, no one knows anything. I wonder how places like this stay in business?
So after some raised voices, it was delivered after 10 pm on a weeknight. And then the rest of the infusion went off without a hitch.
We just finished infusion number three. I again had to have it all set up…
Do you see a pattern here? I still think I should start getting a consulting check. LOL!
I asked for the delivery to be the week before and not the day before. In case there was an issue there would be more time to sort it all out. Nursing was still fine and the only side effect was feeling sleepy which might have been the Benadryl.
Then my son says, “I don’t believe in this treatment.”
What?! OMG! Do you know what it took to get all this? Um, I don’t see your medical credentials anywhere! Some days are just like that with this kid. Honestly, I think that’s more of a teenage boy thing. They think they know it all! I’m waiting for the day when he’s 35 or 40 and tells me, “Mom, I’m sorry for all the doubt I had. You were right.” That’ll be the day!!!
Okay, on to the next battle…
(and I never expected this one, but it may prove to be the most fruitful.) – We are waiting on a new intake for a new diagnosis… I’ll let you know how this turns out.
