I have to call today...

[izzi'smom]

to schedule a surgery date. I got the news Friday that I should noww qualify for FMLA. I thought that it would be a whilelonger before I qualified, and now I am TERRIFIED that I am not doing the right thing. She is still fairly healthy on Tacrolimus and Bactrim, with 2-3 episodes of diarrhea a day and fecal incontinence every one to two days. :voodoo::voodoo::voodoo: needing to channel some inner strength today!!

 

[Irene3]

My heart aches to read this...and failed humira pred and infliximab??? Wow she's been through so much for such a young age. I feel for you!!! It must be incredibly difficult, and you must have a lot of inner strength, just looking at the remedies you have sought for her. I wish you both the best!!! If her pediatric gi feels that surgery would improve her condition, even if it's only 3 bouts of D per day, then I guess as difficult as it is, its probably best. It may help to know, when I first needed a bowel resection, I thought, no no, its just D and a bit of pain, I'll be fine. I had a lot more bowel recsected then my gi first wanted to, (70cm as opposed to 50) and it was emergency surgery. So I should of listened to my gi. Now I do. But it's up to. Only you and Izzi know if it's causing so much pain that surgery would be best. Wishing you the best xoxo

 

[crohnsinct]

Oh Ang I can only imagine. I even got a GULP feeling reading that you are ready to schedule. Lots of love your way hun...you can do this!!!

 

[Suzysu]

Sending you a whopping load of inner strength from the UK! - Your GI sounds really great and Im sure they have Izzy's best intrests uppermost even if its the most scary thing you have ever thought about - I can't even begin to imagine what it must be like - sending you lots of good luck too!! xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

 

[Tesscorm]

Hi Angie,

:ghug: I can't imagine how difficult it is for you to make that phone call, especially with her feeling better this last little while! But, correct me if I'm wrong, Izzi's meds are only a temporary solution, right? I believe you mentioned once that her GI did say the surgery will seem to be such a difficult decision when they are feeling better on the meds... but it is only temporary. :ghug: Try to remember how much Rowan has improved after her surgery Maybe Mary (myreinhard) will jump in to give you some support too!

I'm thinking of you and Izzi and sending you lots of strength; you both deserve some real relief from this and it seems that her doctors believe the surgery will bring you both that relief!

:Karl:

 

[Farmwife]

I know how you feel. Yesterday was Father's Day and Grace was picture perfect and her daddy was the center of her attention. My hubby love it. So going to bed last night he said he wanted to hold of on pushing for testing and to give the Miralax time to work. Poor Guy!
I haven't tried to discuss it with him yet. It's kind of hard when she's hanging off his neck saying your the best daddy ever. :kiss:
FYI- He had candy in his pocket. What do think so asked for later.:lol: GIRLS

Hang in there and keep the big picture in mind.


Farmwife

 

[Mom2oneboy]

Big (((hugs))) Angie! Praying for strength and peace for you.

 

[AZMOM]

Ang - Praying for strength for you. I think the second guessing is so normal....... Hugs!

J.

 

[Sascot]

What a stressful thing! It is always hard to change the status quo when they are doing ok, but I seem to remember your posts saying she isn't allowed on the tacro long term? If you didn't do the surgery and they took her off the tacro then she got worse, then you would be wishing you had done it. At least now, if she has surgery when she is feeling quite well, her recovery should be alot easier! Thinking of you.

 

[jmckinley]

Angie,

My heart goes out to you. Making decisions is tough. I am thinking about you. Praying for a clear decision for you. Sounds like you have a good Dr. to help you through it.

 

[kimmidwife]

Ang,
My heart goes out to you and Izzie. I know how rough Caitlyn having surgery was for us but we got through it and I know you guys will too. You are doing it in Boston correct? You know they were rated #1 in the country for peds GI?

 

[my little penguin]

:ghug: such a hard decision.

 

[LilyRose]

Just to say "Thinking of you".

Lily Rose

 

[izzi'smom]

She suggested July 6th...and I almost fainted. August 31 is the date we got. More time to prepare (stress lol!)...phew!

 

[Tesscorm]

Thinking of you! :ghug:

 

[Jenn]

Thinking of you Angie. Totally understand it being terrifying. Sounds like Izzi is still not doing all that well though. Hope it all goes well.

 

[QueenGothel]

You guys will do great. Rowan is having a bit of a issue right now. Docs say it is due to j-pouch or possibly stomach flu. Regardless even though we are back in the hospital due to dehydration, Rowan is in no real pain right now. I don't think anything can ever compare to the IBD pain for her. Just remember it is a good thing that Izzi be in the best of health before her surgery. And if she is feeling good it makes the surgery safer for her in the end. Are they planning to keep her on the current meds right up until the surgery???

Keep you eyes on the prize. A happy Izzi. Hugs to you both.

 

[izzi'smom]

UGH so sorry Rowan is inpt...AGAIN!
We are fighting the insurance company to keep her on Tacrolimus, but that and Bactrim are her only two meds right now (she is supposed to be on supplements but I have not forced them). Tacro is already losing efficiacy- so I know that this is the right choice...but it is still a tough thing to face.

 

[Manzyb]

I'm sorry to hear this about Izzi having surgery. Sending loads of warm wishes and big hugs to you and her. Hopefully, she will be symptom free for a very very long time after surgery!

 

[DustyKat]

Oh Angie...:hug::hug::hug:

Thank goodness you were given the later date!

It certainly is a tough thing to face hun. With Sarah I had no time to think about it but with Matt I had ample time and as I use to flush and dress his drain each day I use to look at his belly and think...I don't want anyone cutting into my baby! I can smile when I say that now but I surely wasn't then!

I hope more than anything that this will be a turning point in Izzi's life and she will have lasting peace and relief, bless her...:ghug:

Thinking of you both, :heart:
Dusty. xxx