Thursday, October 10, 2013

... And Then My Head Exploded

I wasn't exaggerating when I said our lives revolve around poop these days. It still does. Since meeting with the general surgeon a couple of weeks ago, I have also met with the GI again, Kingsley's paediatrician, and today King's urologist. It's been great, and by 'great' I really mean mind-bogglingly ridiculous. 

Here is a breakdown of what we are discussing:

GI: do a cecostomy and do it now. Stop messing around and cut to the end where this happens either way. No MACE, MACE is bad. Maybe a mitrofanoff. 

Surgeon: no cecostomy, there are too many risks. MACE would be better, but try enemas for now. 

GI: what?? The risks are minor. Don't do enemas, that's a waste. Try senna for now [sidebar: worst advice ever. That was an ugly, ugly week]. 

Paediatrician: Cripes. I can send you for a third opinion, where would you like to go, who do you want to see? Are things better in Toronto? [another sidebar: is there anything better than a dr that admits this isn't their specialty and refers to experts whenever you ask? No. There isn't <3]

Urologist: cecostomy? Never. He needs a MACE and I will do it. And maybe the mitrofanoff, we will see, but likely [insert awkward moment of him trying to explain why, LOL!!] And yes, do the enemas now. But get a MACE soon. 

Which is about the time my head exploded. What do we do? Whose opinion do we trust? I have no idea. At this point, we are going to hang out with PEG until after the casts (that he gets Tuesday) come off. Then we will try enemas. Then we will start talking about a timeline for the MACE and investigate the mitro further. There is some security in knowing that this is somewhat status quo in the SB world. 

Good grief. Kind of makes me want to punch myself for ever whining about potty training Rach and Cor. If only a sticker chart and Strawberry Shortcake underpants could solve these problems! 


(not that you shouldn't whine about how awful potty training typical kids is. It really is horrid. Worst 2 months ever. Kind of. Well, whatever, it sucks, I remember.) 

7 comments:

  1. That is so frustrating! What's so bad about the MACE compared to a cecostomy? I've not heard many bad things about the MACE (not that we've investigated in depth considering we're nowhere near that stage yet).

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  2. You are scaring me! We go to clinic on the 23rd and yeah I am not looking forward to the convo with the urologist because his answer was just wait til closer to for her to start school. Um she's 3 dude, she needs to be on a program now, she's in a preschool and wears diapers while the other kids go to the bathroom. Can we get an answer and move forward??? ARGH! I hope you guys figure out something soon!

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  3. I still don't understand how a doctor can ethically tell you to skip trying something and go straight to a surgery! I don't care how easy it is, it's still surgery! And those surgeries sometimes work fine for a while and then fail... Or so I hear.Yeah, the senna thing is dumb and a waste of time. But why are they so anti cone?! It blows my mind to skip it altogether and instead operate!

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  4. I totally understand! At least you got to see a GI doc though. Have you watched any of the SB University courses online? They have a bowel section and these are supposed to be the experts.
    From my own experience, surgeons want to cut and see that as the only way to do things. And I'm hesitant of people who say that we should skip all of the other steps, because what if they work and you can prevent surgery...
    Currently I'm frustrated because I know we need to change our routine and I can't get our nurse to tell me what to do. I'm considering just doing my own thing and changing the solution (like I've been changing the volume).
    You'd think the team would come up with the same recommendation of what is the better thing to do...

    Good Luck and you got lots of time to consider the options too.

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  5. Gotta love that - nobody agrees on anything but to disagree! Figure it all our for us... since your head has already exploded. It will save the rest of us. LOL

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  6. My head just exploded too. Clearly you need to go to medical school. Or buy a lot of medical texts and a medical-to-english dictionary. gah!

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  7. OMG...whose advise to follow that really sounds difficult to have them pulling in different directions! Your current plan sounds the best to me...

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