Sunday, March 13, 2011

Who do we have to Kill to get a Pump?

This is the story of our road to pumping. Like most anything that is worth it, it was not easy.
J was diagnosed with Type 1 on Jan. 4th. We knew right away we wanted to get an insulin pump but were told we would have to wait 6 months to a year for insurance to approve it. Six months to a year of shots up to 6 times a day! Agh! No!
I called the insurance to find out that they did not have that requirement after all and J could start pumping whenver we were ready. Hurray!
So we tell the endo's office that we are more than ready, we know how to give shots and we *need* to get J on a pump. Chasing a (then) 12 year old boy around the house to give shots is not fun.

A little known fact among the general public is that there are not a lot of pediatric endocrinologists out there. So they are busy. Very busy. Type 1's are supposed to be seen every three months by an endocrinologist - it's the standard of care to make sure all is going ok.
So I figure, ok our first visit since diagnosis is due in March, we can get started on acquiring a pump then. Just hold on for a couple of months J. You can do it. And he does! He's not happy about the shots, but he knows there is no choice.
March rolls around and we head in to the endo office. But we are not seeing J's endo, we are seeing another endo in that practice. Ok, no problem. I present our case to her - we *really* need a pump for J. He is Special Needs and is not really dealing well with all these shots. He is getting desperate for a pump. And so am I because I have to deal with him and his desperation.
She isn't very enthusiastic sounding about this idea. Tells me that since J is Special Needs, he may not qualify for a pump!? Excuse me?! These needs are all the more reason to get one! He won't give himself a shot. He bareley tolerates the school nurse giving him one. (one of his all time greatest stories was the day he came home VERY mad at the nurse. He refused to EVER go back to school. Why? Because she "dropped my shot on the floor, then picked it up and threw it across the room, then used it on me!" Uh-huh. Yea, sure son.)

So back to the endocrinologist. She tells me to go ahead and get signed up for a pre-pump class (a class to allow them to charge our insurance for telling us about the types of pumps available). But not to get our hopes up. So we do. I call and leave a voice mail to set things up. When I get a call back, the woman asks if I want to attend the class coming up in about two weeks. Sure! Wonderful! I was told it wouldn't be until summer - sign me up!

Two weeks pass and we go to the class. J has already gotten an Omnipod sample mailed to him because he likes the idea of going tubeless. But the size of it just doesn't work for him. He says it itches, and only manages to wear it for a day before he can't take it anymore. So I know we won't be going with the Omnipod. I also know that we really NEED a remote control for this pump. The Omnipod has one, but that is not an option now. The other pump that has one is the Animas Ping.
That's it. So our choice is really already made. We have to have a remote because DS will freak out if I'm always having to handle his pump. And he won't do anything with it himself but wear it.

So we sit through the class and J plays on my netbook that I brought for this occasion, knowing that he has no interest in picking out his pump. That's my job.
At the end of class, we get to try on an infusion set. Since I have decided to get the Ping, we try the Inset infusion set. These sets come in colors. J picks green - the only green one they have, as a matter of fact. So the educator shows me how to get it all ready to insert (which is a learning curve all by itself). Except when I get it out of the packaging and ready to insert, J chickens out.  So I'm standing here holding this sterile item that I really can't just put down (sterility needs to be maintained) and he is saying he wants me to put one on myself first. But he wants the green one. And all they have left now is pink.
So, I convince him to hold the green inset against his skin so it maintains the status quo as far as sterility goes, and I open another one. (just opening them and getting them ready to insert takes about three minutes each since I have no idea what I'm doing yet)
I insert the pink one on my ab and when he sees this, he allows me to insert the green one on him. Yeah!!  We wear our sets for three days, then take them off. (infusion sets should be changed about every three days unless directed differently by your doctor)

J is happy - he likes the infusion set and now wants a pump even more. One "site" insertion every three days vs. up to 6 shots a day is no contest. Bring on the pump!
At the pre-pump class we were told to decide which pump we wanted, let them know and send the information to the pump distributor. They would get it handled and we would get a pump. Hallaluha we are on our way to pumping nirvana!

So we send in the paperwork, notify the doctors office and wait. Animas calls us and lets us know that our insurance requires we purchase the pump inside our state and they are based outside it. No problem, a distributor has been contacted and will contact us soon. Great! No problem! Except suddenly it was.
The distributor contacted us and told us it was all a go, they were just waiting on the doctor to sign off on the pump order. A week went by. Then another. Still waiting on the doctor. I place phone calls to the office and the doctor is out for the day. They will call us. Nothing, so I call again and now she is out until Monday. She will call us. J is getting more and more upset, screaming "where is my pump?" when I try to find out what is going on. It is not a happy time.

I finally get in touch with the endo office only to find out that the doctor won't sign for J to have a pump. WHAT?!?! She is the one that sent us to the class, and the class instructor is the one who told us to order the pump and it would all be taken care of. Turns out there is a problem. She meant for that class to be an informative session for us. That's all. Except that class is for patients to pick out and order a pump! And she can't sign because she isn't Js' endo. She is just another endo in the office. OMG. I cannot believe this is happening. I get a call in to J's actual endo and he can't sign either because he has not seen J yet (except at diagnosis but I guess that doesn't count). I am losing it. I try to find another pediatric endo in the area but the few that are around are all booked up for six months out. Our next appointment (when we will actually get to see J's "real" endo) is coming up in June, which is just about six weeks away now. But six weeks with an unhappy J is hell on earth and six long weeks of it, at that. He is not happy. I am not happy. But we'll make it.

About two weeks before the endo visit that we were eagerly anticipating, we get a call. The endo won't be in the office that day and they need to move our appointment. To September. At this point, I am cursing (to myself, not the nurse who calls). I am beyond furious. I am absolutely livid. This would be NINE months after J's diagnosis. Nine months before he sees his endo. When visits should be every three months. Not acceptable. I look up the endo online and find his email. Which is when everything turns around.

Dr. L is the most wonderful endo I could ever hope to have for J and I hope we never have to leave him. I don't know if they kick kids out when they become adults but I sure hope not. Dr. L assures me he had no idea about J's appointment being moved that far out, it's not acceptable, and he gets us in to see him within a week.
He signs off on the pump and asks if there is anything he can do to make our lives better. (he asks that at every visit - I love this man!)

So, all is good again, we are a go for the pump. I call the distributor to let them know. And we wait. And wait. I call the distributor and everything is fine, but they need 30 days of BG readings to get the insurance to approve. I send them. And wait. And call. "Hello? We need some help here. I have a pump class set up in two weeks and kind of need the pump for that." No problem, they will have it to us in plenty of time. We wait. Now we are down to the wire. Pump classes are mandatory and they fill up fast. If we miss this one, we may have to wait for another two months or longer. J is going absolutely nuts. By this point, so am I. I call one more time because pump class is next Wednesday, one week from today. The guy I've been dealing with all this time is at DisneyWorld. He'll be back Monday. But the  guy who answered the phone can try to text him to see if he will *let* phone guy place the pump order for me.

That. Is. It.

I call Animas and ask for another distributor. They send me contact information for AIM Advanced Insulin Management. The contact turned out to be for a cell phone for the most wonderful lady. I called after hours Wednesday night, expecting to leave a voice mail. Instead I got to talk to W. Told her what was going on and that our pump class started Wednesday. And we really needed a couple of days with the pump before that to get acclimated to it. W says "no problem." And finally, this time, it really isn't a problem. Insurance did not need those 30 days of BG the other distributor said they needed, so we don't have to send AIM anything except our signed paperwork saying we want this pump.
She has me fax the info  to her and Thursday she has a rep waiting in the endo's office to get the paperwork signed. They order the pump the same day! Hurray!!! FINALLY!!!

The pump is due to arrive Friday - perfect. We can learn a bit about it and play with it over the weekend and be all ready for the upcoming class.
I'm off work and stay home all. day. long. to be there when the pump arrives. (It has to be signed for. This thing costs around $7000)
I wait. And wait. You can see where this is going, can't you? UPS never arrives. I finally look out the front door to notice a pink paper stuck on my glass door. The door I was behind all day long. Never left the house so I wouldn't miss the delivery. "Sorry we missed you but we'll try to deliver again Monday". AGHGHGHH!!!!!! I'm ready to kill someone. My head is about to explode. I CANNOT believe how much trouble it has been to get my hands on a pump. It would have been much easier to find another person with a Ping and kill them for it. I'm sure we could have made the pump class before I got sent to prison.

I call UPS, who insists no one was home (I have a dog, mister. Believe me, if the guy had bothered to step foot on our porch, I would have known it.) Which brings me to the fact that he must have tiptoed up to the freaking door for the dog to not have barked. And he sure didn't knock. UPS will not bring the package back out tonight. Or Saturday (not sure why about that one, it's a Priority package)
So I haul butt over to the office to pick it up when the driver gets back from his run.

Finally, finally, finally we have the Ping. It's in my hot little hands and thank God for it! Even after all that, it was worth the hassle! Pinging rocks!


Lorraine of "This is Caleb..." said...

Um, yeah. I think I have to agree that it might have been easier to find someone with a Ping and kill them for it.

I am so happy however, that you did ultimately get through to his doctor and HE is top notch - that's a relief. And Ms. AIM - that was great too. But good golly all the garbage in between - so sorry. D is hard enough - you shouldn't have to deal with all that extra nonsense.

Mom2aSweetBoy said...

LOL - yea, looking back on it I can laugh. But at the time, I really thought my head might explode. And now anytime I do have issues, I contact J's endo via email. He is the *best*! Thank God the Dexcom wasn't any problem at all to get :)