Stick a hot poker in my eye...please.

So we had spent the weekend in Orlando with our friends the Teals. We split the cost of the "hotel" with them and it ends up being WAY cheaper than staying in a regular hotel. Makily had two appointments (one of which EEEARLY) on Monday so we made a weekend of it.

I went in yesterday morning to check out of the hotel. I don't have many nice things to say about where we stayed except they had a GREAT pool area (which for Makily is a HUGE plus). They nickeled and dimed you on EVERYTHING. My biggest complaint though is that they do not give you toilet paper. If you run out during your stay, then you have to purchase more yourself. No I am not kidding. The list goes on really but that's for another day.

I go to check out and they tell me we owe them $4.97 for phone calls. I literally laughed out loud at the clerk. We all had our cell phones and NONE of us used the phone in the room. I was not surprised though after our stay there that they were trying to milk another five bucks out of us. After arguing with him he said he would charge it to the credit card the room was held on. I told him fine but it would be disputed. Yeah it's only five dollars but it's just the principal ya know?

Then myself and my sister Elizabeth arrive at APH for Makily's first appointment. It was an upper GI and small bowel follow through. I wasn't really concerned about getting the upper GI as I know she can't reflux or even vomit, she retches like a mad woman. I was more interested in the small bowel follow through because she has either diarrhea or constipation. There is no happy medium with this kid. Gut malrotation is also a common thing in some ES kids and I wanted to be sure that she didn't have any form of that. (I have a mild form myself)

ANYWAY

I check in at the desk and they ask me if I had the script for the tests. I told him no that it had been sent over MONTHS ago from the GI doctor. He says they don't have it and I need to call GI at The Childrens Clinic.

So I call The Children's Clinic and here is how the conversation went.

ME: Hi this is Makily Caldwell's mom I need to get an order faxed over for a upper GI w/small bowel follow through. Dr. R ordered it months ago and APH says they don't have the order.

HER: Ugh Gastro's last day here at The Children's Clinic was on Friday. You know they left and are starting their own practice right?

ME: Oh no, I heard rumors but I didn't know when it was going to happen.

HER: Yeah Friday was their last day. Let me see if I can find the order in the computer for you. Oh here it is. I will print it, then fax it over...do you have the fax number?

ME: OH THANK YOU..the number is ....

So I hang up and think "wow that was WAAAY too easy" to myself.

I go into registration and give them insurance information. She calls Radiology to see if they have the order....they don't....*sigh* She sends us over the radiology waiting room saying most likely they will have the order in a few minutes.

We wait for a while and then the front desk lady decided she would call them for us to check on it. She speaks to someone different who claims they can't fax it over.

*sigh again*

So I call The Children's Clinic back and here is how that conversation went:

ME: This is Makily Caldwell's mommy again, I just spoke with Jennifer and she said she was faxing an order for me. Can I speak with her?

HER: I don't know who Jennifer is......

ME: WHAT? She just talked to me less than 20 minutes ago

HER: Oh uhm well she must have been answering the phone.

ME: ....ugh okay. So can I talk to her!?

HER: I don't know where she is, what can I do for you.

*I then annoyingly explain it all to her again as she will not get Jennifer who knows all this already*

HER: Oh okay well the order is more than six months old so we can't send it.

ME: WHAT, WHY NOT?

HER: My supervisor says.....

ME: Just let me talk to the supervisor....

**she gives the phone to supervisor**

ME: Ma'am I am just trying to get this order faxed over for my daughter. I need it now.

HER: I am sorry but it's more than six months old...it was written in April 2007, why isn't it already done!?!?

ME: *very annoyed* Well I scheduled it once for July and she had A HEART CATHETERIZATION which was more important so I had to cancel. Then I rescheduled it for October and she got sick. So I rescheduled it again for today and you are saying you won't send the order over!!

HER: Well orders are no good after six months you know.

ME: ....*HUGE ANNOYED SIGH* well NOW i know that! So what am I supposed to do!!

HER: Call gastro at their new office...here's the number.

At this point I was ready to scream.

I call the number for the new office and get the ANSWERING SERVICE. *sigh* She says they were supposed to start answering the phones in the office at 8:00 but at this point it was nine and they still weren't. I asked if they had a back line number she could call and she didn't have one. So I ask her VERY NICELY to get in touch with WHOEVER is taking care of patients today and have them send over the order. I was VERY specific about the order and what it needed to say. The front desk clerk in radiology also spoke with her and reiterated what I said.

A few minutes later they tell me they have the order but that they had to make sure the radiologist would use it. Strange I thought. She comes back and tells me that the order ONLY read for an upper GI. The doctor (who is NOT Makily's regular doctor but one of his associates and had no idea really what was going on other than what we told him) called to make sure they got the order and when the receptionist told him it was supposed to say "small bowel follow through" also he said "well that's not what the message from the answering service said" and hung up.

AAAAAACK!!! I wanted to run around in circles screaming while pulling my hair out.

She said they would take us back for the tests in a few minutes and figure out what to do from there.

They call us back and as we are walking to the back my cell phone rings. I answered the phone and wasn't sure who it was when I heard the lady walking us back for the test say that they were ONLY going to do the upper GI. I immediately cut her off and said "we have to do the other test...that is really why we are here". Then she tells me the doctor didn't order any other test and they can't do anything without an order. In the meantime the person on the phone is saying "ma'am can you hear me...did you get what you needed....did you need something else?"

I cracked at this point.

I said

"I am going to have a nervous breakdown right here, everybody HOLD ON A MINUTE".

I find out that the nice voice on the phone was the answering service making sure I got the order. I told her no that I didn't and that I needed it to say "small bowel follow through". She said she would make sure it was done ASAP.

I hang up with her and feel like a TOTAL A-HOLE for just yelling at everyone. I apologized for getting frustrated and explained that I had been trying to get the order taken care of for an hour at that point and that I was GOING CRAZY.

They were very understanding. They asked Makily's history and questioned why I wanted the small bowel follow through. I explained it all and they agreed to do the test. While the test was being done the order was faxed over.

I don't have results for the small bowel follow through...but the upper GI looked good.
Next Makily had a follow up appt with her neurologist. They take us to the back and the nurse is talking to us and says "You know Dr. X is not going to be with us past the third week of Jan right?"

She tells me that Makily's neuro is most likely going to start her own practice and that in the meantime she is only seeing hospital patients. She said we could follow Dr. X when she opens her own practice but they would let us see Dr. O in their office.

I hate switching doctors with Makily. I'd rather have my armpits waxed.

So the new neuro Dr. O comes in the room. I am leery because well I just am with new doctors. I trust no one initially when it comes to Makily's health care (Thanks again Shands Childrens Hospital of Gainesville).

I asked him about Makily's MRI from July. I had been told there was no changes but I got a copy of it myself. The initial one from June of 2006 said "the ventricles are enlarged" while the one from July of 2007 says "the third ventricle is enlarged also". I wondered why the wording was different if there was no change.

He asked if I would like to see Makily's MRI films so he could explain things further. I said "HECK YES I WOULD". So he took me into his office and let me sit in his big doctor chair :-) He showed me lots of pictures of Makily's brain, her ventricles etc. He said he wouldn't say she had hydrocephalus but that she had enlarged ventricles.

What is the difference I asked?

**this part makes me sad**

He explained that in hydrocephalus typically the fluid inside the brain builds up and causes increased cranial pressure. Children with this have headaches, nausea, vomiting and are VERY irritable.

With enlarged ventricles it is different. He showed how Makily's ventricles ARE large and there is more fluid outside her brain. There is not increased pressure and nothing is being compressed. There is room inside her skull.

Her brain is smaller than normal.

When your brain is smaller the fluid in your head increases and takes up the space that "normal" brain tissue would.

He used the word atrophy (which I hate) and said that most likely the brain has shrunk and that is why the extra fluid is there and why her ventricles are enlarged.
He couldn't tell me if her brain has truly shrunk or if she was born this way because we do not have an MRI from birth. There is no change since June 2006 though. As we walked back to the room all I could think was that I have not done enough for Makily and the fact that her brain is small is because of me. I was almost in tears when we walked in the room. My thoughts immediately shifted when my sister said "Makily's button is out".

ARE YOU KIDDING ME!?

REALLY!?!?!?

Makily was asleep on the exam table when my sister went to push her back a little further to make sure she didn't roll off. When she got over to Makily she noticed her button was lying on the table right next to her.

I picked the button up and checked the balloon on it by injecting water into it. Sure enough it has a pin prick sized hole in it. I had to put it back in and tape it to the outside of her stomach.

*sigh*

We finish the appointment and head for home. Once home I called our home health company to get a new button. Here is how that conversation went:

ME: My daughter's button came out today because the balloon has a hole in it. It's only been in two weeks. I need you to overnight one to me. I had to tape this one in her stomach.

HER: Ma'am it's late in the day I don't know if I can get approval for overnighting it.

ME: How about I hold on and you try

HER: Oh okay

****sat on hold for at least five minutes*****

HER: sorry for your wait...did you say you just put it in her stomach?

ME: yes two weeks ago. Can you please overnight a new one?

HER: I just spoke with my supervisor and she says that the manufacturer wants you to contact them for a replacement since it is defective. It only lasted two weeks.

ME: Uhm, YEAH I will do that...BUT IN THE MEANTIME my kid's button is taped in to her belly....CAN YOU PLEASE OVERNIGHT A NEW BUTTON.

HER: Ma'am you need to call the manufacturer, I can't overnight a button to you.

ME: So you are saying you WILL NOT send a button for my daughter? If this thing comes untaped in the middle of the night she will have to have surgery TO REPLACE IT!!! If you guys don't want to pay to overnight it I WILL PAY FOR IT....I will give you my credit card number RIGHT NOW!!!

HER: My supervisor says you need to call......

ME: LET ME TALK TO YOUR SUPERVISOR!!

**placed on hold again for at least another five minutes**

HER: Sorry for your hold are you still there?

ME: uh huh

HER: I was mistaken....I apologize....my supervisor wants ME to call the manufacturer while you hold.

ME: okay fine

****on hold for another five minutes****

HER: i have them on the other line. What did you put in the balloon when you filled it?

ME: uhm....water...what else would I put in it?

HER: well they want to know.....how much water?

ME: 6 cc's.

HER: okay hold on again

*more of the monotonous holding*

HER: Okay they are going to overnight a button to you but the earliest they can do it is in the morning so you will have it Wed morning. I couldn't get one to you any earlier than that myself.

ME: So can I still get one from you guys just in case they don't send it?

HER: I told you I can't get it to you any sooner than they could.

ME: *sigh* Okay FINE, so if i don't have a button from them on Wednesday morning I will be calling YOU!

HER: Okay ma'am have a nice day.


Stick a hot poker in my eye.....please!

So that was the end to my horrible day. I swear it felt like EVERYTHING was a fight and a hassle. I get so tired of explaining myself 800 times to people that really don't care and aren't paying attention.

This is nothing new, I deal with this a lot since having Makily and it doesn't get any better. I don't get why she didn't just overnight the button to me. I can't imagine that she would want to have a feeding tube TAPED into her stomach any longer than she absolutely had to. It makes me mad that I have to fight like that for something that seems SO LOGICAL.