Frustrated

Nothing annoys me more than someone who thinks they know everything especially when it comes to my child. No matter who you are is irrelevant. 

We didn't have a very pleasant visit to clinic today and normally I don't ever butt heads with Arley's doctor, but today was definitely an exception.

He discussed removing Arley's G-Tube today (when she goes for surgery next week) because apparently the risk of infection due to prolonged use could result in an infection in the bloodstream and could result in killing her. However removing the G-Tube takes away the ease of allowing her to take her medicine that she needs. 

Arley has a bad gag reflex that she has yet to grow out of. Because of this she vomits medicine that she has to take by mouth which is defeating the purpose of having to take the medicine in the first place. She is also incredibly smart and knows when her drinks are medicated. She will refuse to drink from that cup again because she associates it with something she doesn't like. If she can differentiate this when she was 2.5 and first diagnosed, a year later you can imagine how much more aware and vocal she is about something like this.

Pause

Let me just state here for the record that I am fully aware that the possibility of this happening (blood infection) could be very much real. I am not denying that by any means. However, Arley has already been using the G-Tube since the summer and if she was going to get an infection I think enough time has passed that she would've developed the infection by now and continuing to use the G-Tube for another month or two at most doesn't sound too risky to me. What sounds more risky is removing the G-Tube from her stomach and her throwing up the medicine she needs to continue for the next three months and NOT having any go into her system and thus causing her to be susceptible to pneumonia which could kill her too. So as you can see I'm stuck between a rock and a hard place right now and it's six one way and half dozen the other. Neither of which have a positive outcome if she can't handle taking the medicine. 

To me, this is something that we should have discussed a long time ago and provided Arley the tools to learn how to overcome her fear of taking medication by mouth and worked on it so that when the day came to remove the G-Tube she would be okay with taking the medicine on her own and it wouldn't be any real big deal whether she had the G-Tube or not. 

I will not apologize for shutting down on the doctor either and ending the conversation. If you are not going to listen to me as a parent and understand where I am coming from then you will lose any argument you try to make with me. At the end of the day, I as her mother am the one who has to deal with the struggle of attempting to get her to take the medicine. I am the one who has to clean up the mess she vomits back at me because she has trouble taking the medicine. Honestly, is going through that every time she needs any medicine over the next three months worth the hassle? 

Again, let me reiterate, Arley is smart. People think 'Oh she's young, she won't remember any of this.' She has shown on multiple occasions just how much stuff she does remember and I hate to say it, because I wish she didn't, but that's what makes her a smart kid and one who is very observant and aware of her surroundings. She talks about what happens to her at clinic more than you would think. I don't want forcing medication upon her to turn into something else in the future. Know what I mean?

What I wish doctors would understand is that you see my child for a brief few minutes and whatever decisions are made in your office I have to deal with the repercussions of any of those decisions. If I feel it is in the best interest of my child to leave her G-Tube in until I can work with her to get her to swallow the damn stuff then you should support me in that decision and not try to change something drastically that she isn't ready for just yet. This is why some people refuse to go to the doctor. 

I do like Arleys doctor, and I do trust him. If I didn't I would've found another doctor for her ages ago. So let me be clear in saying that. He has had her life in his hands for almost a year now, but............. sometimes doctors fail to see the overall picture of things and that is what frustrated me the most today. I was looking to do something temporary for two months max, and he kept trying to use death as a way to scare me to do something. If it was that bad then I feel that Arley wouldn't have been using the G-Tube for as long as she has now. Clearly it wasn't that big of a deal because she still has it. Now that treatment and medicines will be getting less and less over time, I think it's only a smart decision to stick with what works for now until we can get her over this next hurdle.

I'm not saying forever obviously, I'm not stupid, but I do feel it's stupid to change something someone is so used to at the drop of a hat and think that everythings going to come up roses. For some people yes I would agree that could work, but again I know my child better than anyone and what works best for her is what I'm going to do, regardless of what others think. And that's a fact.

I still have eight days to think this over because she's not having her surgery until then so don't think that I have made any decision in haste because I haven't and already told him before I left today if he felt the need to remove her G-Tube then go on ahead and do it, but when this backfires I will be the first to say I told you so.