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Crohn's Disease Forum » Parents of Kids with IBD » Update on Dusty's Matt


 
12-20-2010, 02:09 AM   #61
Manimation
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Best of luck on him getn outa there. I know how damn anxious I was to get out once I was feeling better. Starting to think a restricted diet may be what I need right now too.
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12-20-2010, 05:36 PM   #62
DustyKat
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Thanks Dex for posting updates! and again thank you everyone for your well wishes.

Surgeon has been in and is pleased with his progress so IV has been removed and he has commenced on oral meds. He wants him to stay in another couple of days for observation and hopefully all continues to go well and he will be home Thursday or Friday! YAY!

Matt is so happy to have the IV out and I think he is finally starting to see light at the end of the tunnel.

Feeling much happier,
Dusty
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12-20-2010, 07:55 PM   #63
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DustyKat - I was reading some old posts when I came to this thread...and OMG what unbelievable bad luck. It is so completely and utterly unfair that both your kids have Crohn's! I can't imagine what you've been going thru, but hang in there. When it rains, it pours - but it can't rain all the time
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12-21-2010, 05:00 AM   #64
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So glad progress is good, and very excited that he should be home for christmas! He may not be able to eat christmas dinner, but I'm sure you've got something lovely for him under the tree!
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12-24-2010, 05:43 AM   #65
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Thanks fateful one and and georgiegirl!

Well we are finally home on Christmas Eve. Matt is feeling really good and is so glad to be home. He has no pain and is allowed to eat! We will be cautious though and take things slowly.

Hopefully the stint in hospital has calmed everything down and we can move on, if not his GI, who is on leave at the moment, wants him sent to Sydney so I hope it doesn't come to that!

Sending everyone best wishes for a very Merry Christmas and a very happy and healthy New Year.

Lots of love,
Dusty
12-24-2010, 05:59 AM   #66
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Awesome news Dusty!! Merry Christmas!!
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12-24-2010, 08:12 AM   #67
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Great news Dusty and a very Happy Christmas to you and your family and a very Happy Christmas to everyone out there. x
12-24-2010, 11:19 AM   #68
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I'm glad Matt got to come home and can eat!!! Merry Christmas Dusty to you and yours. Hopefully, Matt and Roo can enjoy the holidays and have a healthier new year!!!
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12-27-2010, 02:40 PM   #69
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Great news. I hope that Matt is feeling better every day.
01-02-2011, 09:12 PM   #70
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Wow - I completely missed all of this, and then I saw your changed siggy and went searching. Sorry about the diagnosis. Glad you made it home just in time for Christmas. They are both lucky to have you.
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01-03-2011, 08:45 PM   #71
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Hey Dusty, so sorry I haven't been in touch-missed all of this, wishing for you and the whole family that the New Year brings healing & happiness.
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01-05-2011, 04:54 AM   #72
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Thanks so much guys, all your messages and well wishes are most gratefully received.

Matt seems to be holding his own. Still has what he describes as tightness over the terminal ileum area that is only present on movement but other than that has no other symptoms. Sometimes he looks quite well and other times deathly pale but he says he feels he is getting better, keeping my fingers crossed, keeping my fingers crossed, keeping my fingers crossed..... Doc rang me with his TPMT result today and he has the enzyme in sufficient amounts so his Imuran is now up to 100mg.

He is having a few days break in Sydney and will be off to the cricket tomorrow with Roo, not my cup of tea so I will go shopping instead.....YAY!

Lots of love,
Dusty
01-05-2011, 09:36 AM   #73
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Dusty,

Thank you for the update, I hope that he will only get better!! And it's good that you all are getting a break, enjoy.......

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01-05-2011, 03:34 PM   #74
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Hiya Dusty,

Sending all my love. Thinking of you all. Enjoy your break with Roo. Meg doing really well with her 100mg of AZA, vit B12 injections and vits A and D!

Love to all xxxxxxx
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01-05-2011, 04:41 PM   #75
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Hi Dusty
I am from the UK
So glad your kids feel up to enjoying the cricket!
My son is in Australia and will be in Sidney tomorrow (your today) for the cricket.
Small world. Hope it all works out for you and yours x x
01-06-2011, 12:04 PM   #76
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Hi Dusty. Glad things are going well for Matt and y'all. Hope for a great 2011.
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01-06-2011, 05:30 PM   #77
DustyKat
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Thanks guys!.............

Well Matt didn't make it to the cricket and I didn't get to go shopping......

Matt had been staying with Roo at the uni since it's close to the cricket ground, she rang me yesterday morning to say Matt was in pain and he had vomited. It was a no brainer so we ended up at RPA hospital which is where his GI in Port wanted him to go should things worsen.

His white cell count was through the roof and they were convinced he must have had an abscess but the CT once again showed that this wasn't the case but he still has heaps of inflammation. They are going down the same track as the docs up home did and they feel the inflammation may be masking a micro perforation. Surgery still hasn't been ruled once they get the inflammation under control so we are taking it day by day. They have said he will be in for at least 10 days and may well stretch out 14. Back to everything IV and NBM.

One good thing to come out of the day was Roo ended up going the cricket, which I'm glad she did as she indicated to me she wouldn't be going. She took a friend with her, who is Chinese, and she had never seen a cricket match, turns out they had a fab time! YAY!

@ Mario. Did your son enjoy the cricket? He should have 'cause you lot have more to cheer about than we do!

Lots of love,
Dusty

Last edited by DustyKat; 01-07-2011 at 05:27 AM.
01-10-2011, 04:53 AM   #78
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Well Matt had his follow up CT Scan today as the docs felt his white cell count on admission couldn't be that high without something brewing. Now that the inflammation has reduced somewhat they found the abscess (5cm x 7cm) they were looking for. A bit of a double edged sword really, I don't want it to be there but at least we know what we are dealing with. He will have a drain inserted tomorrow and they seem to be leaning to the fact that he has a fistula but since they can't visualise it must be a micro perforation. I asked why they thought this and they said because they could see air outside the bowel. If that is the case then he will continue with the IV meds (Hydrocortisone, Flagyl, Ampicillin, Gentamycin and Paracetamol) a little longer and then stabilise him on oral meds before discharging him, at least another week. The drain may stay in for a few weeks if it is a fistula, we'll just have to wait and see and they still haven't ruled out surgery in a few weeks/months time.

I think one of the worrying things they said was the crohns was flaring in about half of his small bowel but it has settled significantly since last Thursday. Matt has handled all the news very well but none the less I asked him if he wanted something to help relax him tonight and he said yes so I have asked the doc to give him something.

To throw even more docs into the mix, when they did his obs early this morning his pulse was 38 and it threw everyone into a panic, he had 2 ECG's and I kept saying is pulse normally is only 40 - 50, they had no choice but to follow protocol and a pulse rate below 40 is an automatic referral. So to add to all the other docs he's had the Cardiologists come a couple of times today just to be on the safe side!

Dusty.
01-10-2011, 05:35 AM   #79
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a mother's instinct is so strong, and usually correct - when you said earlier that one day he looks ok, and another looks pale, i did wonder if things were going as well as he felt they were

at least now they've found the abcess, and possible other reasons for him being so below par recently, & it sounds like he's getting excellent care & attention.

i hope everything settles down properly and quickly - keep on updating us - we're all with you. x
01-10-2011, 06:26 AM   #80
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No wonder Matt loves soccer, I bet he can run for a week and never get tired with such an athletic heart rate!!

And when that mother is a veteran nurse whose seen this thing already with one child, that intuition is unquestionable. I know nothing will be missed. Matt's in the best of hands.

No need to say "hang in there", I know wild horses couldn't move ya. Thanks for the updates Dusty!!
01-10-2011, 08:38 AM   #81
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Thanks for the update Dusty, I was just thinking about Matt last night. You are such a great Momma! You have us all here rooting for you, worrying for you and praying for you (and Matt). We are all in this together :-)
Lots of Love Comes your Way.....
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01-11-2011, 03:50 AM   #82
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Thanks Ding, Dex and Sara........

Matt had the drain inserted today and all went well. A bit of pain when he got back to the ward but a bit of Morphine knocked that on the head and he is now feeling pretty good, YAY! The Youth Consultancy Team has been visiting him and brought him a Playstation and some DVD's, tomorrow they are bringing maths puzzles!
He was also pretty happy that his English teacher and school Principal rang today and had a chat with him...............it's all helping to lighten the load and keep his spirits up.

He will go for a Sinogram in a couple of days to see if he does have a fistula, boy wouldn't it be great if it turned out he only had an abscess, funny the things you wish for ay...........oh well I will have my fingers crossed!

Thanks everyone for keeping us in your thoughts and prayers.
Dusty
01-11-2011, 03:57 AM   #83
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glad to hear things are sounding a little happier - and that he's got someone bringing things in for him to do - those hours in hospital are slower than the ones outside, i swear!

keeping my fingers crossed for him too xxx
01-11-2011, 06:21 AM   #84
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Math puzzles, hah, probably the first thing he asked for!! Was Matt ever able to take his final exams? Glad things are looking up Dusty!!
01-11-2011, 10:10 AM   #85
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Hiya Dusty

Sorry, I've not kept up todate with this! I've just read it all!
Thank God, it's looking ok at the mo, and it would be with a fantastic Mum like you!
I hope he doesn't have a fistula too, so have everything crossed for him!
Take care of you too Dusty, we don't want you hitting the deck with exhaustion!
Big hugs you way, for all of you!
xxx
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01-11-2011, 06:26 PM   #86
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Thanks Dusty for taking the time to keep us updated
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01-12-2011, 03:33 AM   #87
Manimation
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I'm finally back after a long christmas break and this was one of the first threads i went back to check on. How old is Matt again? I thought I went through a bunch as a kid. Hope things are looking up!
01-13-2011, 12:39 AM   #88
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Awww thanks guys!

Planned discharge date is the 19th and he is over the moon 'cause the IV was removed today! YAY! He will go for his sinogram Monday or Tuesday and I guess that's when we will have a clearer idea as to what the future holds and when.

I have decided to spend an extra few days in Sydney after discharge so Matt at least has the opportunity to do a few things, I don't want this whole trip to be just a hospital visit!

Was Matt ever able to take his final exams?
Hey Dex, No Matt hasn't had his uni exam yet but when I spoke with the lecturer he gave plenty options as to how he could sit the exam, like taking it as an oral or the lecturer would come down to our place and he could sit it at home. He has until the 30th June to sit it.

He wants to continue to enrol in the same amount of units as prior to his illness and I can see where he coming from with this. I think he feels he needs to have some level of control over the disease and if things don't go according to plan because of the CD then he will be able to accept that but if he pulls back because of the what ifs then that is something he wont be happy with.

How old is Matt again?
Hi Manimation, Matt is 17 and yeah things are finally looking up, I think he is finally seeing light at the end of the tunnel. Even going home with the drain isn't worrying him and being a nurse has it's pluses 'cause it's no problem to me to look after it.

Lots of love,
Dusty
01-13-2011, 02:38 AM   #89
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Wow Dusty just read all what's going on about your son! I'm sorry to hear he's not doing well but I wish you guy's all the best of luck.
I say again it's awesome how involved you are with everything it really helps the Crohnie that's going through everything to have someone.

Zal <3
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01-13-2011, 06:51 AM   #90
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Thanks Dusty!! Just glad to know things are going ok!! Has Sarah been by to see him?
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