WARNING: RANT ALERT! RANT ALERT! RUN FOR COVER!
I am still livid and I have had a couple of hours to calm down.
We took Marissa in to get her g-tube changed out today. A little backstory first: Marissa has had a Bard brand g-tube button since she got her gastrostomy in May '07. The Bard brand button is a low profile (flush with the skin) more permanent device. You have to go to a clinic and get it changed out by a nurse. It is very painful to the kiddo to have it changed but it really only needs to be changed every 1 to 1 1/2 years. Marissa had hers changed out last in May of '08, so it was past time to change it again. Plus, the last few weeks, the device has started failing. It has been leaking a lot and causing her stomach acid to leak out and burn her skin. Not good.
We decided to have it changed out and, at the same time, change brands to the AMT MiniOne Balloon button. This button is also low profile but the feeding extensions lock in place so the kiddo can't just yank on the tube and *GUSH*, out pours all the feeding that is supposed to be going into her stomach. We have been having some issues lately with Marissa yanking her night feeding out while she is supposed to be going to sleep. She does this on purpose so we will come running in there and pay attention to her. She does not understand that when she does that, we have to change her clothes, change her bedding, give her a bath and put her back in bed. Nor does she care. UGH! This new button is held in place by a water balloon and can be changed out at home with no pain involved. Yay!
I called the surgical clinic two weeks ago to set up an appointment to have the button changed out and the new supplies ordered. I spoke directly with Nurse L who would be changing the button out. We love Nurse L, by the way, and this rant is not related to her whatsoever. We need spare buttons and feeding extensions. The button is no good if you don't have the right tube to hook into it to feed the kid. Since Marissa gets NONE of her nutrition by mouth, this step is pretty important. I actually had two buttons with two bolus feeding devices that my friend Janay, Milo's mom, gave me a while back. We just needed the 90 degree feeding extensions and back up buttons. Nurse L faxed an order to our lovely (NOT!!) DME company, CrApria (whom this rant is VERY MUCH about!) On the 18th of January, 10 days ago. She has faxed hundreds of orders hundreds of times to CrApria and other DMEs over her tenure as a nurse at this clinic. She knows how to get this done.
I asked Jeremy to join me at the appointment today since I would have my hands full with a hysterical Marissa and we would need to have a little lesson on how this new device works. Boy am I glad he came with me and Marissa today.
I got to the clinic and as soon as I opened the door to get Marissa out of the car, she started crying, coughing, gagging and trying to throw up. This girl is too anxious for her own good! Thank God she had not had anything to eat in several hours or we would have both been covered in throw up! I got into the clinic and was checking in when Jeremy showed up, thank God, because Marissa was non-stop crying and I could do nothing to console her. We got called back to the room and Nurse L came in and told us that we would need to reschedule for another time because CrApria did not send the order. WHAT?!?!?! No friggin' way am I doing this all again and have Jeremy's sacrificing time at work and Marissa's super anxiety all be for nothing today. No friggin' way!!
Nurse L got on the phone with CrApria and I got on the phone with the local branch. If nothing else, I wanted to go to the branch and pick up the proper extensions myself. Well, that was a no go because the button we switched to is a "special order" and CrApria does not keep any buttons or extensions in stock, they order them directly from the manufacturer and it will take 7-10 business days to get them. GRRRR!
Nurse L came back in to explain the situation to us. Come to find out, CrApria changed their fax number and, while the number Nurse L originally faxed the order to was still a valid CrApria fax number, it no longer went to the enteral department. So the enteral department never got the order! Now, why someone didn't see that the fax was in the wrong place and take the small amount of time it would take to get it to the right place, is beyond me. Even people who are collecting a paycheck for the work they do can be so lazy and inconsiderate. Some people have a syndrome called NMJ ~ Not My Job. If they weren't specifically told to do something by their supervisor or job description, even if it is the decent, considerate thing to do, you can bet they won't do it, just because it isn't their job!
I told Nurse L that we were not leaving without getting Marissa's button changed. First, the current one was leaking stomach acid and burning her. Second, I just knew that it would completely fail sometime very soon and I was not willing to have to go to the ER some night in the next 7-10 business days because it came out and we have no way of putting one back in, while we wait for CrApria to pull their heads out of their $#@! I was speaking to Nurse L while I was on hold with CrApria. The lady came back on the phone and reminded me that, if I have the bolus extension, which I have two, that we can still feed her. It will lock in place, but because it sticks straight up, it will not be very comfortable during Marissa's night feeding because she LOVES to sleep on her stomach. But it is doable. Just then, I had a revelation. I hung up with the lady from CrApria and called my friend Janay. I briefly explained the situation to her and she told me she could overnight me some feeding extensions! God bless her, she saved my sanity!!! She just texted me and let me know I would have the extensions in my hot little hand by noon tomorrow. Thanks Janay, I owe you big time!
So, knowing that we could feed Marissa over the next 24 hours with the bolus extension, we went ahead and changed her button out for the new kind. It will probably be a long night of the feeding pump alarm going off because Marissa is crimping the line by laying on her stomach but we will manage. Marissa was a trooper, by the way, and we gave her Tylenol to help with the pain. Poor baby passed out when I got her into her bed and is still asleep as I am typing this. I hate that she has to learn to be so tough, so young. I will never take for granted all she has been through just to be here. She is my hero.
So, I will have the extensions Janay sent me tomorrow and I called CrApria back to confirm they got the order and are placing the order for the supplies I need today. We'll see if they get it right. I highly doubt they will. I am not exaggerating, in the 2 1/2 years we have been dealing with CrApria, they have gotten one order right. Only one. Just one. And technically, they even screwed that one up but I forgave them for it because the error was in my favor. They sent me six cases of sterile water instead of the two I ordered. Ha! That is the closest they have ever gotten to getting any of my orders right. Ever.
I am so sick of them I could scream. It is not like I am calling Kohl's and ordering a blue sweater and they either sent me a red sweater or dropped the order all together. These aren't leisure items I am ordering. These are medical supplies and equipment that my daughter depends on to KEEP HER ALIVE! CrApria should really be ashamed of themselves and how they treat their customers. Pardon me, patients. I know of so many others (many of you will comment in the affirmative, I am sure) who go through this same thing, over and over and over with CrApria. Otherwise, I would think they were just picking on me! But this is nationwide ignorance, incompetence, and complacence! Nurse L filed a complaint and I am going to also.
CrApria will be made aware that you don't F*** with Mama Bear!
Thanks for letting me rant, friends. I feel much better!