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03-18-2011, 04:00 PM   #31
DustyKat
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Hey Mom!

The whole camp thing is a bit of an obstacle course ay? I don't imagine there will be too much R&R for Mom while Daniel is away! You'll have to visit the Worry Club instead!

When is the camp?

Dusty.
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03-18-2011, 05:16 PM   #32
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back atcha Mom!
hope all's well with you and your happy brood!

Dusty, so glad to hear that Sarah is on the mend, and I'm happy to report, so is Jess!
She's coming home 1st April for a month, and yes it's so good to 'see our kids in person!!'

Everyone stay well
xxx
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03-18-2011, 05:36 PM   #33
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I definitely feel part of this "worry club" today... <<that's how I feel !

Our morning of pre-op started out to be good. All of Gab's blood work came back looking good with no signs of infection. And then....her urinalysis came back showing she has a UTI, then we had to go back to the lab for a repeat collection to see if there's anything growing. So they have added an additional antibiotic to her long list of meds for that. It does explain all of her extra lower back pain this last couple of weeks tho.

Meanwhile, we met with the urological team that will be assisting in her surgery. I knew there may be "something" going on with her kidney, but really didn't know the extent. They are about 90% sure they will be inserting a permanent stint into her uretra; and she possibly has some kidney damage due to swelling of the kidney (hydroureteronephrosis). (THIS DAMNED DISEASE ! ) He said he's doesn't think there is according to her blood work, but they won't be sure until they get in there and see for themselves. There are 3 urological surgeons that will be in the operating room with her ! 3??? What's with that ????

Then to top things off I requested a copy of her MR enterography report from January....I shouldn't have read it. I wish I hadn't.

I'm just going to write one sentence out of it here and I'm sure you can get an idea of just how bad my poor girl has this disease....

"The terminal ileum, ileocecal valve, cecum, and proximal ascending colon are unrecognizable, caught up in an inflammatory mass of clumped bowel, inflamed fat, and lymph nodes in the lower right quadrant."...

And then the topper....we had to go for an ostomy consult. They taught her all about the illestomy that supposedly she won't need. If that's the case then why did they "mark" her so the surgeon knows exactly where to put it and then insist that if those marks come off before Monday to make damned sure they know it so they can put them back before the surgery ?!!!???

I just want to cry....I'm sorry...I probably should have put this on the "vent" away thread huh

Im sure I'll jump right off my pity me horse quickly and get back to little ms positive shortly
It's just been one of those days.....I am so thankful that her surgery is on Monday though! Can't come a second too soon !!
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03-18-2011, 05:51 PM   #34
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Aw Tracy!
I've just posted in another thread about Gab's good news, I'm so sorry this has happened since.
It's ok to vent, cry or whatever hun
We're all here for you.
Fingers crossed for Monday, hope it's a good outcome.
Have a stress free peaceful weekend
xxx
03-18-2011, 06:09 PM   #35
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Oh T, . I wish I could be there with you now.

I reckon it's a good thing they will have 3 urological surgeons in the OT. I think maybe they are doing that because of Gab's age and in their own words......we won't know for sure until we get in there. They won't want to make any definite decisions about treatment without consulting with someone else (3 heads are better than one), they want the best possible outcomes for Gab's. I can't say for sure T but I know Roo's problems with her kidney were long standing and she certainly had Hydroureteronephrosis and the renal ultrasound 3 months post op showed everything was back to normal. I just hope this may give some glimmer of hope to you.

"The terminal ileum, ileocecal valve, cecum, and proximal ascending colon are unrecognizable, caught up in an inflammatory mass of clumped bowel, inflamed fat, and lymph nodes in the lower right quadrant."...
This is where Sarah's disease was located. Perhaps Gab's has a little more ascending colon affected but I think Sarah had a more ileum. I know it's bloody hard T but try to focus on the word proximal ascending colon, to me that indicates it affects only the first part.

I just don't know about the ileostomy T. Are they preparing for the fact that there may be too much inflammation present? I know that if this is the case they will do it so they can preserve as much bowel as possible. Godammit T this is my biggest fear with Matt as well, they still haven't ruled it out with him.

I would be crying T, hell everyday I do Matt's flush and dressing and look at his tummy I just about cry at the thought of them cutting into my baby!!!

Mom! You are doing a fab job!

It's so bloody hard and unfair but we are all here for you and Gab's T.

Sending you mega loads of (((HUGS))).....
Dusty xxxxxxxx
03-18-2011, 07:01 PM   #36
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..."Inflammation extends cephalad from here to contact the proximal transverse colon, probably a fistula. There is also extension to at least one, but probably two more proximal ileal segments."
(that's more of the "findings")

Are the transverse and ascending colon the same thing ?


and btw...that "alien baby" is what is obstructing the ureter and causing the hydoureteronephrosis. It does ease my mind a tad bit to know that Roo's kidney was involved as well and she is ok. Maybe there's hope? I know Roo went undiagnosed for a long time; Gab may as well have seeing as how none of the treatments have fazed this damn thing yet !

What a mess !! :grumpy:

Dusty..I can not even imagine what you are going through with Matt ! You have been through hell and back with Roo and now watching a second child go through this...and still...not knowing !!

Sending the hugs right back for you !! (all of you! )

Last edited by Crohn's Mom; 03-18-2011 at 07:03 PM.
03-18-2011, 09:12 PM   #37
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Oh MOM.G....Gentle Hugs Girl! You have every right to Worry, Vent & let your feelings free here! Dusty is right 3 Urologists are better than 1!

In answer to your ?. The TRANSVERSE colon is the part above the belly button that goes across your abdomen. If you follow that from your left side to your right side & continue down the right side towards your appendix this is the ASCENDING colon. At the end of the ASCENDING colon is the cecum, appendix, & where the small intestine or ILEUM meets up with the colon. I hope this helps.

Dusty yes I will worry ..... but not as much as my DH will get to see him twice during the week. My husband is a DJ on the side & they will have a dance for the kids during the week. Also they have country line dancing another time & he will help out that DJ. So he will be able to see for himself how he is. As for the Dr.s appt. today....(minor grumble) I felt like I was at a fast food drive through. Daniel is doing good & the Dr. was rushed so in & out we were. Minor are his issues compared to so many here. But he all in all he is pleased with how he is doing. He wants us to keep a close eye on him as the C-Diff could have caused progression & that 70% of kids his age end up on Imuran in the first year of DX. His problems with C-Diff, Strep, Stomach Bug, & other sicknesses has masked how his Crohn's is really doing. At least the blood levels are good. We don't go back till the end of June.

Joan....The Brood is good. BTW I love your name! It was my mom's & my middle name!

Gotta cut this short I am off to work. Work nights & it's my weekend!

Many Hugs to you ALL! Night Night!
03-18-2011, 10:17 PM   #38
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Thank you so much for that explanation! I was literally putting my finger on my tummy and tracing the Transverse around to the Ascending, etc..LOL . Makes perfect sense to me now...Trans = across; Ascend = down; whoopie !
At least this nasty disease hasn't gone around the full loop yet !
Trying to stay positive ...trying...tryi...tr...
03-19-2011, 05:11 AM   #39
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T, I'm glad to see you in such good hands! I know how frightening those medical reports can be. They sound so cold and indifferent like they are describing some inanimate object. Hey, that's your baby they're talking about!!! Come Monday, it'll be alright....
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03-19-2011, 01:26 PM   #40
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Thank you Mark
Sometimes those black and white words can get ya where it hurts. I guess it was really no surprise when I read it; It just makes it more real.
Having the urologist show us the scans of her kidney, and how swollen it is...and then telling us, uh OH, there's a UTI here's some more medicine...it scared me into thinking that not only has the bowel trouble been getting worse since the scan, but also the kidney?
I will keep busy getting things ready for our stay on Monday, try and spend a little quality time with my 2 sons before I don't see them for a week, and try and breath ! (just a little)

Everythings going to work out....I just have to keep that in mind ! Afterall, I'm of no use to her if I go completely insane right ??
03-19-2011, 07:43 PM   #41
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@T,

How are you today hun? Well aside from worried as hell!

Are you far from the hospital?

I'm sitting here today thinking this will be me in two weeks! Yikes!

Thinking about you guys and sending loads of healing (((THOUGHTS))) and (((HUGS)))......

@Mom,

It is so great to hear that Daniel is doing well, nothing better than good news! YAY! And even better that DH will be able to see Daniel at the camp! I so hope all continues to go well with your brood.....................hugs for all the brood.

Dusty.
03-19-2011, 10:44 PM   #42
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I'm doing ok today...thanks Dusty !!

Just been busy trying to keep my mind busy....I recently bought a new computer so I have been busy trying to clean out the old one and reset it to factory setting so I can pass it along to my brother who doesn't have one

I have been thinking about Matt's surgery as well and how close it is to Gab's April 7th right ?

I can't believe it's time for her surgery already ! Tomorrow should go by quickly, I hope. We are about an hour away from the hospital. I reserved a nice suite for us to hang in tomorrow so she can have a little privacy; Im sure the prep will be YUCK !! Then we are only about 5 mins away from the hospital the next morning.

I was going to pack everything today but I just couldn't wrap my mind around it. I should write a list, but my brain isn't functioning long enough to do that ! haha...I will forget quite a bit I am sure and regret not having things At least I know I will have my handy dandy lap top and charger ! Most important !

I will be sure and update as soon as I know anything on Monday...or before if needed

Thanks to everyone for your thoughts, and kind words and consideration !!
I know my girl's gonna pull through this with flying colors ... and then it's Matt's turn and so will he !! They are FIGHTERS !!
03-20-2011, 03:11 AM   #43
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Awww, that will be so lovely to spend time alone with Gabs before her surgery.

Haha I'm anal, I have started putting things aside now 'cause I know in 2 weeks time I will be useless!! Airline tickets booked....check, X-Rays.....check, paperwork.....check, magazines......check..... Bet I still forget something though!

Yep, Matt's surgery is the 7th of April. We fly down to Sydney on the 4th for Matt to attend all his pre-op work up on the 5th.

Sending you and Gabs all the luck in the world for a wonderful outcome and very uneventful and speedy recovery.....................



Loads of love,
Dusty

PS. I'll be like a cat on a hot tin roof waiting to hear how things go but of course there will be far more important things on your mind!!!
03-20-2011, 10:27 AM   #44
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Oh T. I am so sorry for all of this. That is some scary stuff when they go as far as putting the marks on. That is my battle right now, trying to prevent an ostomy. Lucas, poor kid, can't even touch his stomach without me jumping all over him.lol Wishing you and Gab the best of luck tomorrow. Hopefully, this will all be a distant memory soon and Gab has many years of good health. Sending healing prayers to Gab and strength prayers to Mom. FINGERS CROSSED( hey it worked for Dusty).
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03-20-2011, 06:17 PM   #45
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T - Gab's gonna do GREAT. I just know it. We'll be waiting for the update!!!!

Love you all -

J.
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03-20-2011, 08:23 PM   #46
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Tuesday we repeat blood work and find out how well things are going. It's amazing how a little piece of paper can burst your bubble.

Hugs to Dusty and T who need them.
03-20-2011, 08:52 PM   #47
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Mom.....I've been thinking of You & Gab all day! Sending lots of positive thoughts your way! It's good to know you got the most important things ready to go! That there PUTER! All kidding aside Know their are Many Across the WORLD Thinking & Sending Positive Thoughts for a very boring Surgery!
03-20-2011, 10:51 PM   #48
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Thanks everyone !

just a little update :

We had a pretty rough day today, but she has made it through and is now sleeping. The poor girl had so many medications to put in her little body, I don't know how she did it ! She managed to keep everything down until about an hour a go...then she vomited a bit. (thankfully, it was just a little acidy stuff and not the meds).
She is resting peacefully now.

It's so funny how our children can become "adults" and yet they will never stop being our babies. I just honestly wanted to swaddle her in a blanky tonight and rock her and hold her and tell her it's all going to be ok
Or maybe I just wanted my mommy to do that for me ....

I am so happy to have found this forum, and just in time ! I can't tell you all what it means to me to have such support, and love and kindness in my life right now.

Hopefully, after Gab's surgery, when she is COMPLETELY HEALTHY, I too can give some advice, and support, and love right back to everyone. I have tried where I can, and don't feel as if I am "intruding". I am sure I will get more comfortable as I go along and then you all will be telling me to SHUT IT!

I have found myself logging on here today for words of comfort...not just for me...for anyone...just to read someone else's stories. Reading these brings a strange calm over me and my anxiety about the surgery tomorrow...so thank you for that !

I will be sure to update ASAP tomorrow! I can't wait to tell everyone the great news !!!
(see...lil ms positive is creeping back)

Much love and respect to you all !!
03-21-2011, 02:16 AM   #49
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Hey T and Gabs,

You probably won't see this before Gabs op and I will most likely be asleep when the op is happening.

I just wanted to wish you both one final good luck and tell you that I am wishing, hoping and praying for the best possible outcome for your baby. I feel your pain and worry T and I want you to know that this will be a turning point in Gabs life, a turning point for the better. These times are the most difficult, your thoughts and emotions are like a roller coaster. One minute you know that this is the best thing for her and the next thing you know you are doubting yourself all over again.

Roo has only gone from strength to strength after her surgery and I am hoping and do believe that it will be the same for Matt. I also believe it will be the same for Gabs. So here's to good health and joyful times ahead for you both as you rejoice in her new found vigour, strength and happiness.



Lots of love,
Dusty
03-21-2011, 05:53 AM   #50
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Hey Tracy, we've not experienced any surgeries but I've marveled at the success stories on here. Tomorrow's gonna be a brighter day for Gabs! I can't wait to see your happy update!! I hope you have someone there today to hold your hand, if not, imagine we're all there with you.
03-21-2011, 06:01 AM   #51
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Dusty, so glad to hear that Sarah is on the mend, and I'm happy to report, so is Jess!
She's coming home 1st April for a month, and yes it's so good to 'see our kids in person!!'
I am so happy to hear this Joan!
Bet you're counting down the days............not long now! YAY! I know you will have a fab time together........


Tuesday we repeat blood work and find out how well things are going. It's amazing how a little piece of paper can burst your bubble.
I hope the blood work is all good Zoodles! Fingers and toes crossed! How did the Humira renewal go?

Thanks for the hugs! Sending loads of luck your way for positive results and easy renewals............


Dusty.
03-21-2011, 10:01 AM   #52
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First of all happy vibes out to everyone.

Quick question. How many parents in the US have a 504 on file (at school) for their child? My son's teachers are all working with us but the band director is being an irrational jerk. My son is crying himself to sleep over his first year in band. I think the director has found somebody that he thinks is an "motivational example" for other students and this nonsense will stop. Have requested conference. Just dumbfounded that something that is supposed to be fun and enriching is a source of extreme stress.

Renewal going as expected- still trying to find the correct phone number for preapproval. Dealing with the inner rings of insurance hell right now.
03-21-2011, 10:58 AM   #53
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Waving to You ALL!

((((((Gab & MOM))))))) Just a quick note to let you know the first time you see her after surgery will be tough because of the tubes & stuff. But as the days go by & her strength returns & the tubes are removed. All will be a distant memory! We are in your back pocket today & as the days to come pass Cheering you all on with Warm Hearts of Healing!!!

ZOODLES......... I am seeing steam on your behalf!!!! What a _ _ _ !!! It just makes me so mad. I wonder how he would feel taking the strongest laxative 24/7 for a few weeks & sit in class turning green with pain & what not!!! This stress is so not good for him at all! Go to that conference loaded for Bear...but do it with class & sweetness gets you farther ! We don't have a 504 as we have a group a teachers & school administrators that are very understanding. That's not to say we won't ever need it though. Daniel has missed over 30 days this school year. We did however get medical assistance through the state. I carry the insurance for the family & it's good but the deductible is through the roof. The state insurance is great & covers all the deductibles, copay's with meds & office visits. It has been a god send. There is no way we could take him to the Dr's or do all the meds he has had to go to & take! The DX in my state at least is I believe an automatic reason to get the Medical Assistance. Not sure to what degree of MA you get with what ever your income might be though? Look into it though! It's a lot of red tape but for us it's worth it! I hope this helps!

Dusty Counting down the days with you too! I guess it doesn't matter whether it's the first time or child....we still worry! It's our middle name! LOL!

Off to sleep .... only to wake & hear some news!

This guy is sleeping with me for the afternoon! Enjoy your day Everyone!
03-21-2011, 02:08 PM   #54
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I never thought we would need a 504. His core teachers have been amazing and this is still mind boggling. 5th grade band?? I am on the board that awards teachers grants so this should be an interesting meeting.

We're working through the state disability insurance- it's currently under review. I hope to hear something about it's status within next month or so. How long did it take to get it processed in PA?
03-21-2011, 03:02 PM   #55
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@Zoodles, That is so awful! What the hell is wrong with that guy! Good luck with the conference and let us know how things go.

I feel for you guys and the insurance system. Still keeping my fingers and toes crossed that it is all sorted soon.

@Mom, ahahaha.......counting, worry, counting, worry. Sure helps having you guys along for the ride! Thanks so much.......

Have a good day sleep!

Dusty.
03-21-2011, 04:29 PM   #56
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Zoodles I can't remember exactly but he was DX the last days of September & by the middle of November we had access cards. The insurance cards arrived in the very beginning of December & activated the middle of December. I know they went back retroactive for 3 months on unpaid bills. They started to pay for copays for everything as soon as we got the access cards. I am thinking a little over a month. Our 14 year old son the only one that doesn't have an IBD or IBS has ADHD. We applied for him at the same time & he also got it too. Wish we had done it years ago for him! keep plugging & I hope it comes through real soon. As for being on the board....mmmm Poetic Justice as the Band needs a lot of Grants. I am not so sure how things will go when we get in the High School. We may need one then. We had some issues in past with an older son who had another health issue in High School.

Dusty a Super Dooper Loop ride or Sudden Drop ride? Lol!!! It 'twas a good sleep. Now it's off to to be a "mom" & then to work!!! BTW has anyone heard anything on Gab? I will go read for a few & see!
03-21-2011, 05:02 PM   #57
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Update: surgeon just called down and said "going good. Another 1-2 more hours."
Anticipation is killing me... Were going on 6 hours now!

Will update more soon
03-21-2011, 05:21 PM   #58
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Hi T!

We're all hanging in there with you! So great to hear that everything is "going good". Thinking of you and Gabs.

Dusty.
03-21-2011, 05:50 PM   #59
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Thinking of you guys. I like the "going good" part.
03-21-2011, 07:45 PM   #60
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I'm so sorry I'm not goin to write much. She pulled through and is in recovery.
She has an illeostomy (6 mos min. W a 50% chance of reversal)
Doctor said he's never seen anything like what he saw in there!
Over 100cm of intestine removed.

I am spent.

Thank you all for your prayers! It means so much!
I will update more when the flood stops....
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