Tacro working :) but Izz is sick :( long ̶u̶p̶d̶a̶t̶e̶ rant

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izzi'smom

izzi'smom

Joined
May 23, 2011
Messages
1,549
Sitter called me today because she vomited...she has a fever and has been in bed all day. Her dad woke her up to give her the time sensitive med but she hasn't had any others so I am hoping she may have vomited because she missed her Prilosec. I called her doc, who told me to watch her for a couple of hours and call him back. She is the same, so I am going to leave her be for now (at least she is sleeping comfortably).
I am so grateful for her doc today...that I can call him when he's not on call and he is always willing to lend an ear. :)

Her frequency has decreased and volume has increased per bm...I am super excited that we may be trending upward with the Tacrolimus. :cool2: I wish it was a drug that we could use long term...I *knew* I was going to have trouble with a drug that makes her better only to have surgery! :hallo3:

Mary and Rowan sent us the most beautiful care package, and I am hoping they will be "pen pals" (minus the pen, because neither can spell yet ;)) that get to meet IRL one day. :ghug: We love you girls!

Sorry for the rant, and thanks for making it this far. :ghug:

I am going to get used to our new normal sooner or later lol!:hallo3::hallo3::hallo3: :)
 
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Oh Angie...:hug:...did things settle any for Izzi? Lordy I hope so hun, bless her cotton socks...:heart:

I would have trouble too Angie!...:hang:

Oooo so fab to hear to about the package! :):):) WTG Mary and Rowan! :cool:

Thinking of you hun,
Dusty. xxxxxxxx
 
My thoughts are with poor little Izzi, I hope things settle down quickly for her.
Rgds
Grant
 
Oh poor Izzi! I hope she is feeling better today! Getting all packed up? What is the date of the actual surgery? Safe travels and all our love and prayers to you and your family.
 
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Hopi Izzi is feeling better today! So great about the care package and new friends!
 
I hope Izzi was better today!:rosette1: And that all goes well this week! :ghug:

Thinking of you!
 
Hi, I have been watching the forum as I thought izzi was scheduled for surgery 5/7 is that right? If so is that today 7 may or is it 5 July - uk and USA date opposite ways.

Looks like I was wrong. Been thinking about her and wish her well.

Lots of love , Kaz xxx
 
Hello there!

How is it going?

I'm glad the tacrolimos is helping, and when is the date for surgery? Am I right - is it for a colectomy?

I hope that things settle down soon.

Thinking of you,
LilyRose
 
Our consult was the 7th...we met with the surgeon and GI to prepare for colectomy.
We have some leeway in planning the date as long as the Tacro is helping (the surgeon told us when we "get tired enough of dealing with her Crohn's" ;) I need to work a few more months before I am eligible to take more than a week off, so when I can figure out when that is we will set a date. :)
 
Always lurking and reading and thinking of you and Izz Ang..and a bunch of others too :)
I'm sorry it's looking like "Crohns" but at least you know sooner than later right ? :) At least thats how my mind thinks LOL.

big hugs honey..you're doing a fabulous job as always !
xoxoxoxo
 
Hoping izzi s feeling better.........I guess I should scan the forum more often...I'm out of he loop.......I didn'tt know you guys were going to do surgery....let me know if you need anything when that takes place..I actually work the area around the hospitals......would be glad to help if you guys need anything....
 
Ang,
Somehow I missed that Izzi was going for surgery. When is it scheduled for? We will keep her in our prayers!
 
TY Dutch and Kim!

We are actually going to Boston Childrens for the surgery per her docs recommendation. I will be scheduling it as soon as I have worked 1250 hours this year and am eligible to take more than a week off. This should be in the next few months.
She is having a wonderful day today (what a Mothers Day gift!) Her mouth sores arent bothering her much and she is my old, sunny, sweet girl today!!! <3
 
:) She was sunny and sweet again today...
and it was the end of the day before I realized that since she got out of bed this am, she hasn't pooped at all!!! YAYAYYYAY! She is still having nocturnal accidents, but I am shocked that Tacrolimus has made such a huge difference.
...and of course, I am ready to message her doc and find out how they manage kiddos that ARE on Tacro long term (it is an anti-rejection drug but causes kidney failure). Even though the GI and surgeon warned me that so many parents hate to do surgery after tacro works its magic.
Just wanted to share some fab news for a change :)
 
It is so wonderful to hear that Izzi is feeling so fab...:sun::sun::sun::sun::sun::sun:

So bittersweet for you Angie...:hug:...Thinking of you hun and sending loads of love, luck and well wishes across the way...:heart::heart::heart:

Dusty. xxx
 
Aww, just enjoy the moments!:Flower: I'm really happy to hear that Izzi is feeling well and happy! :hippy:
 
Oh, what a great Mother's Day present! :rosette2:
Nothing better then having happy children!
Glad to hear she's doing well!
:soledance:Farmwife
 
SO I discussed this with her doc at length. He is SUPER pleased with how she looks right now and tells me if she still looks/feels good in two months he will rescope her. If she has little inflammation, we can discuss long term tacro options. <3
I also keep commenting that I am sad she is about 14# lighter than when she got sick. He finally pulled up all of her growth charts and showed me that she WAS in the 95th percentile height and weight, but her BMI was off the charts...in an unhealthy range. She is now perfect.
She *still has sores in her mouth...10 days now. Doc says expect them to stick around for 2 weeks because of her immune suppression. She is cranky and hungry lol!
 
Glad Izzi is looking so much better. It would be great if the med keeps working well. Hope those ulcers go away soon!
 
PERFECT IZZI! Those are such awesome words to hear on a Friday. Silver linings!

Great news on her looking SUPER!

Long term Tacro?! Does that potentially mean no surgery?

Go away sores!
 
Angie, I hope the Tacro can work wonders for Izzi for the long term!!! You and she both so very much deserve a break from all this! :Karl:
 
I think she will still need eventual surgery, but a little more leeway in planning. I have to double check with our other GI docs...they are fairly reluctant to leave kids on Tacro for long. I guess it warrants more research, but for now I am going to bask in the moment :cool2:
 
Our Doc attended our CCFA take steps walk with us today...
he pointed out all I have been missing.
She was FLYING around the playground...laughing, playing, FULL of energy.
He's wondering if we can use Tacro like some can use Pred...use it to induce remission and withdraw it.
We met Sophie, 8, who had a colectomy a few months ago. Her twin sister is interested in a "sibling support group"; she is so sweet! We also met another woman (I forget her name) who was in ICU after becoming septic following her ostomy surgery. She was thankful to be alive and walking...her story touched me!
It was a good day...wanted to share :ghug:
 
What a great update Ang :kiss:

Your doc sounds amazing ~ how wonderful that he came out to the walk with you all !
Sometimes it takes an "outsider" looking in to help us take a breath, and take notice of the good things in life! I'm glad he helped you notice that Izz is still having some fun in life despite all she's been through. I find myself taking lessons from Gab's lead in life quite often these days :heart::heart:
 
...and more bizarre good news. CRP is down to 2.4. From 60's in April.
:)
:)
:)
We are planning on scoping her in one more month to see how she looks.

ETA...I am not sure I realized earlier. This is a COMPLETELY normal CRP. Now I need to know why lol!
 
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Wow!!!! That is great news!!! :pika: OMG, you must be so happy and relieved! :banana:
 
That is awesome to hear! Good for you guys! I wish we could have made the walk...we had so much going on that day and we could have made it but we would have had to rush there...leave quickly...and rush back. :(
 
Talked to our Boston doc today (should have held off on calling her...ignorance is bliss) who is thrilled she is doing so well BUT feels that we have 5 months to plan her surgery. Organ transplant pts are on it long term because there is no other option; we have another option (surgical), which she wants to pursue. If it stops working (biggest if EVER) we are looking at emergent surgery, which we are trying to avoid. :(
 
Thanks for the update Angie...:hug:...I know it would have been hard to put it down in words.

:hang: you are doing fab. Thinking of you hun...:heart::heart::heart:

Dusty. xxx
 
That post sounds terribly negative...which I didn't mean!
I am truly grateful to have her healthy right now...and I realize that the best possible surgical outcome comes when performing surgery on someone who is not acutely ill.
It is only BECAUSE she is not acutely ill (hell, she looks PERFECT!) that I am having such a hard time grasping this concept (why take out a healthy kids colon?!)
Anyway, I am still happy as a lark that she is doing well...and plan to continue to ride that blissful wave for as long as possible ;)
 
Oh Angie it didn't sound negative just heartfelt and I know that Izzi doing so well now is what is making the surgery that much harder to bear. I would be the same!

It surely is fab to know that Izzi is doing so well. :):):) So deserved and not before time. You have been to hell and back hun so enjoy, enjoy, enjoy!

Onwards and Upwards!
Dusty. xxx
 
"Should have held off calling" Boy don't we know that feeling too well!

Guess it was good you did though so you could get the hard cold truth...just a shame because you have had more than your fair share of that.

I can't imagine how hard it must be to face surgery on your child when they look so well. You are not being negative at all! You are being a mom...and a great one at that!

Celebrating Izzi's feeling good and hoping it continues right up to date of surgery!
 
Oh, that must be so hard Izzismom. Can certainly count on the docs to keep us grounded. I wish she could keep feeling well without surgery. Having her mostly healthy going in and prepared would be better than emergency situation, but also so hard to accept it's still needed. Frustrating. Glad that both of you are getting a good break now though!
 
Yeah .....I know that feeling also......Matt seems to be symptom free...looks good....active.....no vomit...no diarrhea.....yet ..labs are negative....dr talking about remicade!!?!? Grr...
We go for appt today And were gonna drop the bomb that we have been researching LDN and see how he reacts....we're expecting a lot of negativity......fingers crossed.

hoping Izzi keeps the healthy train rolling!
 
Appt was very positive! All things considered his progress seems very good. We started the ball rolling with LDN discussion......he didn't freak out....he's willing to look at the informTion we brought, however.....he says he has never prescribed anything experimental Nd would not unless the patient had exhausted all gold standard meds. ..but he knows we're interested and he's willing to look it over....he also said he would refer us to a physician who would help if that's what we wanted to try...
 
I keep thinking 'What a rollercoaster!!'

It is so hard dealing with all this ups and down, and decisions on treatments, and thoughts about the future.

I sounds like you have a good team who are looking out for the best outcome for Izz.

Rake good care of yourself, and enjoy these happy times, and long may they continue up to and past the surgery.

Take care,
LilyRose
 
UGH...she had an accident at school today :(
Not sure if this is a sign of things to come.
There has been a lot of stress at home-her dad is creating quite a bit of drama lately and I can only hope that it is affecting her and that she isn't going to flare. Plus he is stressing me out, which I am sure she is picking up on. :(
THe good news is she went to the nurse, got cleaned up/changed/finished going and went on her merry way. :)
 
Sorry to hear that.:hug:
She and you need to be stress free. :ghug:
I wish people understood that.

I want to put a sign on my door that read:

I'm not the farmer. I'm his wife.
I own the worlds biggest rolling pin.
If you bring strife into my house,
I will use it.:eek:

My husband just laughs and walks away!:ymad:

Farmwife
 
Im sorry things are stressful lately Ang...and poor Izz :(
But BRAVO for her amazing bravery and overcoming what could have stopped her day !
She's amazing ! (and you too momma)
:ghug::ghug:
 
Oh Angie, I'm so sorry to hear that things have been stressful at home. :hug:

My goodness, what an absolute treasure Izzi is! Bless her...:medal1:

Dusty. xxx
 
Applause for the Amazing Izzi! :applause:

What a strong little girl...bet she learned that from her mamma!

Like you need added stress in your life right now?!!!!!

Hoping he buggers off and you can destress a bit.

Farmwife: LMAO...you can sell that door sign!
 
So glad to hear she is doing better with the Tarco. I am always thinking of you girls. Take care. I am glad she likes her present. We are saving up stickers for you guys. Hoping the accident was just that an accident. Stay positive. Hugs momma.
 
The worlds biggest rolling pin lol...I'd like to use a frying pan...can imagine the thwack and it seems as if it would be a satisfying sound. Kidding, mostly. ;)

I *love* the term bugger off...need to use it to keep me smiling. Why don't you...plus it isn't as vulgar as the alternate terms lol!

THanks, Mary...and we have stickers to send to Rowan but just haven't gotten them out yet. Soon!!
 

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