Considering I essentially started my blog on the foundation of complaining about poor customer service, I figure this post is right in line with why this blog was started. In other words, I'm preparing to rant, people. Consider yourselves warned.
So Chase's PC saw that LPA narrowing at his last appointment. He recommended a cath procedure. We weren't thrilled.
At the end of said appointment, I asked when we should hear from MUSC with the date and details of the cath. He said if I don't hear from them within 2 weeks, to give his office a call. Got it.
In the meantime, we spoke with an MUSC PC and he told us it was quite common for these kids to have that narrowing. He wasn't necessarily sure a cath was needed.
We decided to send the MUSC PC the latest echos to confirm his opinion that the cath may not be necessary.
So I asked Chase's PC's office to send the records. I inquired as to how the records would be sent, confirmed it was with an overnight service with tracking info, and was told the records would go out the next day. When I called the next day to confirm, they informed me they did in fact send the records that morning but it was via regular mail because it would have been a $35 charge for them to FedEx them. Hubs and I were not too pleased (call us crazy, but we're not fans of medical records and/or personal identifying information floating around the USPS without any method of confirming delivery). I told the office I was NOT pleased that they made the decision for us concerning the $35 charge. I couldn't fathom why they couldn't pick up the phone and call me to ask what it was I wanted to do. Had they done so, I would've asked them to hold the copy of the records, had hubs pick them up on his way home, and send them ourselves via UPS (for waaaaaay less than $35!). But alas, it was too late. They had already made our decision and executed it without our consent. Lovely.
We didn't want to wait over a week for the records to arrive at MUSC (assuming they did in fact arrive), so I had the office make a second copy of the records, had hubs pick them up on his way home, and sent them ourselves the same day (with delivery confirmation). Those records were delivered to MUSC the very next day. The records the PC's office sent still have not arrived. No surprise.
In the meantime, I'm still waiting for the phone call from MUSC with the cath date, details, etc.
Yesterday, we received a response from the MUSC PC who confirmed it would be best to move forward with the non-urgent cath procedure in March or April to most likely balloon the narrowing to help future growth of the LPA. ((sigh))
No surprise, but I've been a bit antsy and decided to go ahead and call the PC's office today (rather than wait the full 2 weeks and call on Friday) to ask for an update on the cath scheduling. Imagine my surprise when the nurse told me They. Never. Sent. The. Request. OMG. Are you kidding me!? Turns out, again, they decided we weren't planning to move forward with the cath until after we got our "second opinion" from MUSC. So they reasoned there was no need to schedule Chase's cath if the mere possibility existed that we wouldn't want to do the procedure. Isn't that nice how they are so up on their game that they can read our minds and make our decisions regarding our son's health for us? Pretty amazing stuff. As you can imagine, I was quite upset. I mean, logically, I can completely understand how they could've arrived at that conclusion considering I was asking for a second opinion. But again, my problem remains as to why they couldn't pick up the phone and call me to confirm this was in fact the direction we were taking?!
I never once told them we weren't going to do the cath. I've been waiting for "THE" phone call from MUSC for the past week and a half. Ultimately we will do anything that is in Chase's best interest, and in this case, we just wanted confirmation for ourselves that the cath procedure was in fact necessary. I just don't understand why a 2 minute phone call is just too much to ask.
Here's the kicker: So let's say we got our second opinion from the MUSC PC. Okay. He's on board with the cath. Last we heard, Chase's PC's office is scheduling the cath. We just have to sit and wait for the phone call with the details. If I hadn't called up there today to inquire about the scheduling, they would have never known we received our second opinion and are still moving forward with the cath as planned! Right? Because, it's not like I had any intention of calling up there after we heard from the MUSC PC. I had no reason to! Or at least I didn't think so! So an entire month or more could've gone by with us thinking they were scheduling the appointment, and them thinking we weren't on board with it.
I thought hubs and I were just getting a second opinion for our own knowledge and to confirm for us that it was in fact the right thing to do. Other than sending the records for us, the PC's office--in my opinion--was (and should have been) completely uninvolved. But they got themselves involved by not doing what they told us they would do, and then not telling us!
Wow. I'm pretty frustrated. At the end of the day, it's not a huge deal. I'm assuming we can still get in during March or April for a non-urgent heart cath. But oh how I wish Chase's PC's office had a telephone that could make outbound calls instead of them sitting around waiting on me to call and make sure they hadn't dropped the ball.
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Ok, let me try this again. I had some major typos on that first comment.ReplyDelete
Just wanted to provide you with some "hope" if they do go ahead with a cath for Chase. Maddie needed the balloon dialation on both her left and right proximal pulmonary arteries (from scarring/narrowing off of the Glenn site) and it really worked well for her. It bought us a year...for her to grow physically and give her pa's more time to grow. At her recent cath, we were surprised to find that they were staying open and hadn't scarred down like we'd thought. Anyway, just fyi for you.
Good luck and hang in there :) We're waiting on the phone call from scheduling for Maddie's fontan date and it's only been 1 day and I'm chomping on the bit! I'm not patient.
I'm so glad you all are on top of things! It's a good thing. I guess that goes to show that we're THE advocates for our children. :( I'm glad you got the second opinion and we'll be praying THE phone call comes soon. Not that it makes it any better, but at least you'll know when to expect it.
Lots of prayers for Chase (and his very on-top-of-it mommy and daddy! :)