I have been falling behind on my blogging duties! We did finally make it to Josh's bone marrow test last week! If you remember we had a mess trying to get it scheduled, but finally we were healthy enough to go.
It was kind of a fiasco - there was a moment where an employee actually used the phrase "Do I need to call security?" Yeah, that kind of day. If you know Josh and me then you know we're rule followers. There's not much that makes Josh angrier than people who try to bend the rules cause they don't want to put the effort forth to do it the right way. Well, before you get sedated for a bone marrow test they tell you not to eat or drink after midnight the night before. Technically I guess, nobody told us that. When you look at your appointment online there is a link that says "click here for special instructions". So we read them and knew that he shouldn't eat or drink. Well, there is also a line that says:
You may take your other medications as you normally do, but only with small sips of water to swallow
your medications.
Simple enough, right? The first time we had this done we didn't believe it and he did not take his meds. So then in the operating room minutes before he was put under they told him, ohhhh, go ahead and take it. So he drank a mouthful of water with pills. So this time we were trying to keep him on a good schedule as far as timing of the chemo so he went ahead and took his pills with a sip of water.
So we get upstairs and are filling out the forms in the anesthesia services center. It asks if you ate or drank and he said no. And then it asks if you took your scheduled medication. Josh circled yes. And then it asks you how much water did you drink with it. And then there is a blank line to write the answer on. So Josh looks at me and asks what he should put there. I'm all, "ummmm, a swallow?" Well Josh thought he should be more accurate in his guess. So he wrote the amount 1.5 ounces. A complete RANDOM guess of how much water it takes to swallow two large pills. No big deal, right?
Well next thing we know they call him up there and tell him they can't do the surgery cause he drank water. We explained that the form THEY provide us says to take your meds. And that last time he took them while standing outside the operating room. They told us the problem wasn't that he took them, it was cause he drank too much water. We explained that it was a tiny regular swallow of water and because the form didn't specifically state what kind of answer they wanted we guessed and wrote ounces. So I told them to just give me the form back and I will change it to whatever they needed us to say. WELL, they wouldn't let us see the form again. And that's when things got ugly. I was FURIOUS!! It took everything I had in me not to yell.
Josh just about choked down those nasty pills with the tiniest amount of water possible, and because I did not know their secret code word "swallow" we were going to be delayed by hours. We just about moved mountains to get us there while the doctor was in, while we weren't sick, while Josh wasn't working. On top of that my mom took off work to watch the kids and Wyatt was still sick and was puking that morning without his mommy. ALL we wanted to do was get out of there and get home.
SO I talk to the lady at the front desk and tell her it would be super polite and helpful to let people know that if they took their medication the write term they are looking for is how many "swallows" of water you had. If that is what they wanted they should have written a little blank like this:
______________ swallows
Easy enough, right? Nope. They said they can't tell people what to write on the form. So I ask her if a gulp would have been too much. A sip? A teaspoon? Hmmm. Nobody knows the answers to these questions. Isn't this the most absurd thing ever?
I mean, people who are there getting this done are going through HELL. No matter what cancer it is, how old the person is, or whatever - you can pretty much guarantee that this is the worst time of their life. To have to deal with such stupidity is just absurd. They should really be more professional than this.
And the problem was this one woman - she was HORRIBLE. Just so condescending and rude. She even has the nerve to claim that they didn't tell us to take the medicine and that the anesthesia people are separate from MD Anderson. So we walk away and the woman started talking about me with another customer. That was when Josh lost it. He got up and literally yelled at the woman. That was when she asked if she needed to call security. I was happy my man stood up for me, though! :) I went and talked to the patient advocacy people and they were pretty outraged about the whole situation.
The instructions to take you medicine should be removed. AND the people who work in that office should know what information if being mailed to patients. AND the form you fill out should give a clear expectation of what they are looking for. I felt like I was playing a game of Password and they want you to guess what the secret word is to describe the amount of water in one swallow. So ridiculous!
So we sat for hours pushing our doctors appointment late resulting in us not getting home till late in the day. It was really maddening. We only met with the doc for a few minutes, but he told us that he thought Josh's three month BMA results were "outstanding." So that was exciting to hear. Of course we won't know about this next round of tests for a couple more weeks. Praying for good results!
We have already started getting funds deposited into our Amazon account from people shopping through our link, so THANK YOU!! Every penny makes a difference for us. Josh went to the Light the Night walk so I will have him write about it later this week!
Thanks for listening to my ramblings about our horrible MD Anderson day! I know it was something REALLY not important in the scheme of things, but it was important to us at the time! Here's a pic of Josh with Noah after he taught him how to ride his bike without training wheels. So thankful he was here to do it!
