LTP frustration - what would you do??

BennyJam · #1 08-17-2010, 08:37 PM

HI everyone,
I've been off the boards for a while--just busy with summer stuff. I hope noone will mind if I drop back in with a big VENT.

So Ben was originally scheduled for his LTP on Sept 1st. Well, last week I received a call from his GI doctor saying that ENT had asked him to order an endoscopy and a pH probe study for Ben, because they were concerned that he might still have some active reflux. I immediately called the ENT office because I was worried that we would not be able to get this done in time for his surgery. The secretary informed me that Ben's LTP had been cancelled! I was stunned! They didn't even call us!

Now, we were actually able to schedule the GI studies for early next week (so they will be completed before his original procedure date). I called the office and they told me that our date has been given to someone else, and that Ben will go back into the queue once the results of the GI procedures have been reviewed. I can't even get his actual doctor to return my calls!

We scheduled this back in APRIL! We could have done these studies any time over the summer. Ben has been well for so so long--not even a single cold since the spring! I don't for one minute dispute ENT's decision to collect more information before his surgery, but do you think they could have thought of this sooner? Like any time over the last 4 months???

I'm sorry this is so long. I'm just sad for Ben because he is really really ready, and I'm frustrated and angry for us. Preparing for his surgery has been a scheduling nightmare--arranging childcare for the other kids. Plus, our day and night nurses both planned vacations for this week and now we'll be here with no nursing!!

Aaargh! I am seriously seriously losing it here!
Haley

Linnae's Mom · #2 08-17-2010, 08:52 PM

I'm mad for you...I can't imagine how frustated you feel on so many levels. It's amazing no one called you? I would try to push and see if there's any way they can correct this. It really doesn't seem fair.

LittleBee · #3 08-17-2010, 09:04 PM

This is terrible! And I don't think you should accept back of the queue. For us, that would mean several months. Is it the same for you? Is there anyone else you can go to, any other doctor or professional that can help Ben get an earlier time? This really, really stinks!

suzanne2545 · #4 08-17-2010, 09:05 PM

Yes. I would politely but firmly request that you be slipped to the front of the queue once you have the results in from the GI testing. If this is a clerical error on their part they should help you out a little.

Kate · #5 08-17-2010, 09:49 PM

I agree with the others. I would firmly talk to someone. That said-I wouldn't expect them to budge. Hopefully they will. We had something similar happen w/Mitchell's tonsilectomy-nobody called us and we actually drove 6 hours to the clinic. Thankfully we had (but not thankfully) an appointment the day before with the NP and she caught the error. I was so pissed....and it was just a tonsillectomy. I would be IRATE if it were his LTR. I know how much work goes into planning for that and all the mental preparing.

We got no apologies from the surgeon and it was her error. We got nothing but a new date.

I hope you can get something figured out. I do agree the ph probe is a good idea. We ended up needing a nissen and as much as I hated getting it-I feel it was a great decision. Good luck. I'd maybe make an appointment with the surgeon...that really is just uncalled for. Sorry that happened to you!

Just another thought if all else fails you could always go to the patient advocate of the hospital-might not get you anywhere but at least your voice will be heard.

Madeline and Molly's Mom · #6 08-18-2010, 09:04 AM

I would either talk to his scheduler or ask for his email address... I know our docs are much quicker at responding to emails. *or* you could do what my husband and I did and insist they page our ENT while he was on vacation... hey, you know, no one was answering our calls and RSV season is quickly approaching. It's amazing how quickly everything was scheduled after speaking to him that way.

Ainsley's Mom · #7 08-18-2010, 03:30 PM

Hmmm. I would make a big old stink, because I am THAT mom. What would really bother me is that may push your date into cold and flu season. If they can cancel your surgery date with no warning because of their oversite then they should be able to cancel somebody else's date just as easily. How about they call the person who they gave your date to and bump them to the end of the cue? It's ridiculous! I'm mad for you!

On the other hand perhaps it's best not to push too hard because sometimes that backfires. Maybe it depends on what alternative date they offer. But at the very least they should put you at the top of the list and get you in ASAP!

libby1205 · #8 08-19-2010, 01:10 PM

i see you are in pennsylvania and I am wondering if you see ENT at chop because we have been arguing with them for weeks going back and forth- originally told she needed bronch at end of the summer I call to schedule they tell me ok he said 4 or 5 months I said nooo he told me summer ok ill call you back- I call again they say he wants another GI scope I say why hers was normal in june- ok we will call you back- I call again a week later ok he wants it done in november I say nooo he told me summer now every time I call it gets later and later and why does she need another GI scope - I dontknow we will check with him and call you back today- another week goes by I call- HAVE HIM CALL ME TODAY and explain himself!! He called me tuesday night at 830 at night to explain himself I said this is not what you originally told me he says ok well thats what it is her airway is complicated she had an active larynx inflamed blah blah long story- so now we are waiting until november and as of today no one has called to schedule it so now I have to call them tomorrow and say hellooo no one called me AGAIN. It is so frustrating when you have your hopes set on something and then they just dismiss it like your child isnt living with the trach every single day and every day that goes by is another day with it- Ive been crazy waiting for them

BennyJam · #9 08-22-2010, 09:07 AM

Thank you, everyone, for the support and advice! And especially for sharing my outrage--I was beginning to feel and act like a lunatic.

We spoke to Ben's ENT and she said that he can keep his original Sep 1 date for the LTR, provided there is nothing troubling on the pH probe/endoscopy this week. I'm very happy with that. A bit stressful not knowing whether he is going to have major surgery in two weeks but still...I'm satisfied for now. But if he fails the GI workup, you can bet that I will blister them for not ordering these tests earlier, in time to take some corrective action!!!

And was it Libby (?) who asked if we are at CHOP? We are. We have been dealing with the same back and forth that you have experienced. It seems like there is some disconnect between the surgeons and the office staff here. I hope they remedy it soon, because it causes a lot of unnecessary angst for the parents (and for the kids, too, who wait SO long for these procedures).

Cheers!
Haley

Ainsley's Mom · #10 08-22-2010, 02:05 PM

Quote:

Originally Posted by BennyJam

Thank you, everyone, for the support and advice! And especially for sharing my outrage--I was beginning to feel and act like a lunatic.

We spoke to Ben's ENT and she said that he can keep his original Sep 1 date for the LTR, provided there is nothing troubling on the pH probe/endoscopy this week. I'm very happy with that. A bit stressful not knowing whether he is going to have major surgery in two weeks but still...I'm satisfied for now. But if he fails the GI workup, you can bet that I will blister them for not ordering these tests earlier, in time to take some corrective action!!!

And was it Libby (?) who asked if we are at CHOP? We are. We have been dealing with the same back and forth that you have experienced. It seems like there is some disconnect between the surgeons and the office staff here. I hope they remedy it soon, because it causes a lot of unnecessary angst for the parents (and for the kids, too, who wait SO long for these procedures).

Cheers!
Haley

That's fantastic! The squeaky wheel gets the grease. I hope the GI results are good and the surgery is a go!