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Crohn's Disease Forum » Parents of Kids with IBD » Stephen's update and transfer


 
02-28-2013, 03:37 AM   #751
Maree.
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I disagree with your husband totally I think whether your 8 or 80 or anything in between it's horrible going for a significant medical procedure on your own. At the moment your the obvious support person to attend, in time our kids will hopefully find other people to fill that role at least some of the time.

I read with interest a post by a 20 something on the forum about trips to casualty he mentioned he always takes his brother, which I thought was great, I hope one day my children will be able to lean on each other for support with things like that. Particularly as it's unlikely they'll live in the same country as us once they finish High School.
02-28-2013, 06:24 AM   #752
Dexky
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Yeah!!! Damn men!!
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02-28-2013, 07:11 AM   #753
Johnnysmom
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Doesn't hubby know that he has to stick around for your peace of mind, not necessarily Stephen's?

Doesn't he know how hyper vigilant crohn's mommies are????? (Dexky, we consider you a hyper vigilant crohn's mom)
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Last edited by Johnnysmom; 02-28-2013 at 05:25 PM.
02-28-2013, 10:27 AM   #754
awmom
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Glad it all went well!!!
02-28-2013, 10:43 AM   #755
Tesscorm
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Just thought I'd share something... once in a while, Stephen's surprised me at a GI apptmt by asking a very specific question or knowing certain terminology but, this morning, I realized that he really does listen! While the outward signs may be eye-rolling, sighs and lots of I know!s as they walk away , the knowledge and example you share with your kids DOES sink in...

On the drive in today, Stephen was talking about yesterday's infusion and asked me how the GI was going to determine if remicade was working?? He said his blood levels were normal last time so those couldn't be used and that he wanted an MRE! I told him we/I needed to schedule an apptmt for a 3 month follow-up and we could ask then, Stephen said he didn't want to wait 3 months for the apptmt and then ANOTHER 3-4 months for an MRE, that the remicade might not be working, inflammation continuing and we wouldn't know for 6 months. He wants me to call today to book the MRE before the apptmt so we can discuss the results at the 3 month apptmt! He's listening and learning (and even beginning to advocate)!!!!

Unfortunately, I had to bring him into reality and explain that I could not just call and book the MRE and there's no way the GI will do that until the follow up so.... patience is the next lesson!
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May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil

Last edited by Tesscorm; 02-28-2013 at 12:53 PM.
02-28-2013, 11:31 AM   #756
my little penguin
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Doesn't hurt to ask about mre
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02-28-2013, 12:53 PM   #757
Tesscorm
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I agree but I'm 99% sure they won't book the MRE until the GI sees him... but, it won't hurt to ask if we can book an MRE now...
02-28-2013, 04:18 PM   #758
S mom
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Glad to hear it went well... and that every once in a while our teenaged kids show signs of amazing adult maturity and understanding in all this - congrats on showing him the way!
03-01-2013, 01:30 AM   #759
CarolinAlaska
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So glad it went well! I'm in shock that he got left to face it on his own, but so glad nothing went awry! Your young man is showing himself the man he is becoming!
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03-01-2013, 08:17 AM   #760
Tesscorm
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Yeah, my husband and I sometimes differ on what we think is acceptable for them to handle on their own... I think, over the years, it's led to a good balance but, at times...

I have also wondered if, to a degree, it's how my husband deals with the crohns. I think he doesn't like to believe it can be as serious as it is (ie remicade infusion risks and the fact that, regardless of the risks, we still have to give it to Stephen). It can be frustrating at times but... I suppose we all deal with it as we can.
03-02-2013, 04:58 AM   #761
DustyKat
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Well hush my puppies and prune my magnolia's! What a ride!

I am sooooooooooooo relieved to hear that all went well Tess......and that Stephen is starting to advocate for himself! Well done Mum!

May the good times keep on keeping on.

Dusty. xxx
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03-02-2013, 09:30 AM   #762
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I'm a bit behind Tess
But, sooooo happy that his infusion went so well !!

I think it's great that your husband is involved in Stephens care. I'm sure it drives you crazy when he does things like going against your hypersensitive mommy intuitions tho .
I wish sometimes that I had someone to trust enough to tag along to one of the doctors appointments with them instead of, know it all, me
I'm sure my husband would take one of them, if I'd let him....

I think it's a good balance for you
Guys just have a different way of dealing with things like this, especially with their sons.
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03-02-2013, 02:25 PM   #763
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Super glad it all went well.
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Also taking: TuZen probiotic and following a low FODMAP diet (not very strictly).

Past Treatments: Prednisone, Flagyl, Cipro, Pentasa, exclusive EN via NG tube (6 weeks), Prevacid, Iberogast (20 drops twice a day) and high doses of vitamin B2.
03-04-2013, 02:05 PM   #764
Tesscorm
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I wish sometimes that I had someone to trust enough to tag along to one of the doctors appointments with them instead of, know it all, me
I'm sure my husband would take one of them, if I'd let him....

It's tough for either of us to take time off for all the apptmts so we usually split the apptmts so that he does the tests (MREs, ultrasounds, remicade, etc.) and things like sports-related physio and I do all the doctor apptmts.

I would never let my husband take Stephen to a GI apptmt WITHOUT me! He would never ask as many questions as I do, I'd end up with more concerns than before the apptmt! And... I'm way too much of a control freak to not be at the apptmts - it would almost be like sending Stephen on his own!

Case in point, Stephen came home from the infusion last week and said 'oh, yeah, the nurse said my GI is the most aggressive she knows at fighting crohns and even when other GIs would stop, he keeps going.' WTF?!?!? What does THAT mean??? I asked him 'Did she mean that in a good way or bad? What do you mean other GIs would stop? Why would they stop and not your GI?' His answer... 'oh, I don't know, it was just conversation.'

......am seriously considering going to the next infusion myself!

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