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Friday, November 13, 2009

Not condoning violence but...

I could have punched the pediatric surgeon in the face today.

Okay, not really, but she really pissed me off and the more I think about it the more mad I get. Why is it so hard to get a frickin Mic-Key button? Why is this no big deal for everyone else but a huge saga for Christian?

Let me go back to July 23rd. Christian gets his g-tube surgery so he is able to eat. Fast forward to now – he still has the same tube. We were originally told we had to wait 8 weeks and then we could get it replaced. So I made the appointment ahead of time. 8 weeks goes by, I go to the appointment and I’m told it’s just to measure for a Mic-Key button, which is a small button that is an entry to the stomach so we can get food in there. We order the button from the home health care company and…Surprise!’s on back order. Of course it is. Tube stays.

We finally get it! I make the appointment to finally get the button installed. Manny and I go to the appointment, the doctor comes in and tells us she’s had problems with his type of tube. She’s had 4 or 5 episodes where when she pulled the original tube out it separated the stomach from the inside wall of the abdomen and had to do an emergency surgery which left a big scar on a few kids. WTF? These kids had spasticity (tightening) and Christian has some spasticity when he’s in pain which could cause this emergency to happen.

Let me back up and tell you how they take out the tube to place the Mic-Key button. They yank it out. The end.

So the doctor then proceeds to tell me she wouldn’t be taking his tube out in her office but would instead schedule an outpatient surgery where they will put him under general anesthesia. Do I have to say it? W.T.F!!! I am so pissed for the following reasons in the form of questions:

1. Why couldn’t they just put in the Mic-Key button upon the initial surgery? From what I’ve heard, this is a common practice. No tube involved! I asked the doctor and she said it’s just about preference. They just don’t do it that way at that office. That’s it? There’s no other reason that’s actually a good one?

2. What is up with this doctor? She put that tube in and gave him his initial surgery. This tube in question that’s supposedly responsible for this stomach wall separation stuff. She decided to use it because that’s the tube she chose and that’s “the way they do it.” So really, this is all her fault as far as I’m concerned.

3. Significantly less important but what’s up with not calling me before I pack up Christian and head to the appointment? You saw the type of tube he has at the last pointless appointment. This is the SECOND time I’ve gone to an appointment that doesn’t get us ANYWHERE! If you can call me to give me a reminder of the appointment, why can’t you call me to tell me not to bother coming since you won’t do the procedure anyway?!

4. Is this doctor even competent if this keeps happening? I’m feeling more and more like maybe I should look for another doctor.

5. Doesn’t she know he has a brain injury? Or does she care? Putting him out for a simple procedure really makes me nervous. Really, really nervous.

She just kept apologizing for us having to come to the office for her not to do anything. Something just isn’t sitting right with me about putting him completely out. This will be under general anesthesia, which goes where? Right into his fragile little brain. I mean I don't want his stomach to get torn from his wall, but what are the alternatives?

I think the thing that makes me the most angry is that it's like a flashback of the trach situation. It's a doctor telling me that this is how it HAS to be and there is no other choice when there are plenty of alternatives.

So, the tube is still there.

On a more positive and far less violent note, Christian worked hard all week holding his head up all by himself while laying flat on his tummy, propped up on his elbows. Wanna see?

Christian holding himself up but rightfully angry about the annoying flash from the camera.

Still not overjoyed about having to hold himself up, but still doing it anyway. All by himself.

Therapy time! More practice holding that gargantuan head up.

Awesome Superman tattoos from Cici's Mom. I put one on, too, but it wasn't quite as cool as Christian's.


Maile said...

I'm so sorry to hear about your doctor appointment. Sounds like you are angry for a good reason! I love, love, love hearing about Christian and his progress, but this doctor has really bummed me out. I'll be praying for you wisdom for this tube/button/surgery. You are a great advocate for Christian and I know you'll make a great decision for him.
(On a side note: your opening line really cracked me up!)

Caroline said...

I'm sorry you are having such problems with the surgeon! But on a good note, that's some amazing stuff Christian is doing!!!

ferfischer said...

How frustrating. Honestly, I don't understand the problem either. We got a mickey from the beginning, but then, we also got a Nissen. Plus, how can they be backordered? Honestly, we have several extras of our button, we always have to have it on hand. How crazy. I know Pam has a lot of experience with buttons and tubes and procedures, so I hope she can help more than me. Also, I am so impressed (and a little jealous) of the pictures of him holding his head up so well! HBOT works! Can't wait for us to start again too!

Tonia said...

I think you are my new hero. If put in that situation I probably wouldn't have kept my cool and laid it all out rather rudely. I would looking into another doctor too. It sounds like this one is a total flake and taking your/or the insurances money for a pointless appointment(s).

Amy said...

Yep it is all about what the Dr is willing to place at the time. Both times T had a tube placed they were the long tube not a Mic-Key and to be fully honest it was a good 8wks and we then ordered a button went back 2wks later to place it and YES they yank it...sigh. Went to GI 2wks latter only to have her make an appt to have him measured and antoher micKey placed (wrong size thanks Dr M). I will also say I hate hate hate the MicKey and I am doing everything in my powers to stay away from having to place another one. T is currently useing a button I can't get anything for anymore (long story), but sadly its the best button so far! I am going to try and get the ped to write a script for AMT mini one. I hope and pray the change goes well and yes I know you'll love the button much better then the long tube. (((HUGS))))


Tara said...

So glad to see Christian holding up his head! Way to go big boy!

Brooke said...

You definitely have kept it together a lot better than I could have!! :-)

LOVE the new pictures!! The control is amazing to me so I can only imagine how amazing it must be for you and Manny!! Holy schmoley!! He has improved LEAPS and BOUNDS!!

LOVE the Superman tattoo!! ;-)

Oh- and why is she saying that Christian has to go under general anesthesia to get the current tube out??? I know those things FALL out all the time on their own accidentally.....I know we get a LOT of people through our ER for the same why the general anesthesia?? Weird.....I guess I'm lost on that one too!!!

Hope you have a better week!!! XOXO

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