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Update on Dusty's Matt

Dexky

Dexky

To save time...Ask Dusty!
Location
Kentucky
Hey everyone, I just updated Dusty's thread on Vent Away but in light of how supportive she's been to us all over the last six months, I thought her situation warrants more attention.

As most of you know her daughter was dxed on the operating table 4 yrs ago with crohns. Now her son, Matt, has been having troubles. I just got a pm from her this was the gist of it... GI from Tamworth rang and said he want's to do the Gastroscopy and Colonoscopy on Matt so he is sending up the paperwork. GP rang this morning and said his CRP is now 155 and he thinks it's Crohns! He is going to ring Sarah's old GI in Port Macquarie and have a chat with him about it.

Dusty is obviously and understandably very hurt and scared. Any of you who've been around the last several months know how I feel about her. She's meant the world to me as I have had to come to grips with EJ's disease. Above all, I hope this just seems silly in retrospect and they discover that Matt's current illness is a passing anomaly but if it isn't, I'll be here for ya Dusty!! Love ya sis!!
 
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Entchen

Entchen

Chief Dandelion Picker
Dear Dusty,

Want to let you know that I am thinking about you and your dear family as you go through another time of wondering if a family member has Crohn 's. You are an incredible support to us CF members and you will be even more so to Matt as he continues to go through testing and possible diagnosis. Tough job, being the mom, but your kids are SO fortunate to have you.

Warm thoughts,
Kelly
 
Dras

Dras

Hey Dusty,

You've helped me so much with the kind words and advice and sort of being a crohns mommy for me too. I'm so sorry that Matt is having problems and that you have to deal with this. You are such a kind, loving and accepting person, and I really hope that it isn't something serious.

Thinking of you Dusty.

Lots of love...xx
 
Dexky

Dexky

To save time...Ask Dusty!
Location
Kentucky
More from Dusty today. Matt's ultrasound shows thickening at the terminal ileum.

I'll continue to pass on the info she gives me. I don't expect she'll be very active on here for now.
 
DustyKat

DustyKat

Super Moderator
Thank you all so much for your words and thoughts, they mean the world to me.

Oh man I am just so gutted. I am scared, angry, nervous, you name it. One child with Crohns is bad enough but both, well to say that sux would be an understatement.

Matt's regular GP was back this week and after his CRP result came back, substantially increased on the previous result, he decided to chat with Sarah's old GI in Port Macquarie. As a result he had an another urgent ultrasound yesterday. The sonographer and radiology doc were both in the room and they said they could visualise the mass the GP felt and it is thickening of he terminal ileum. I don't think I could have felt worse if you had ripped my heart out.

We go down to Port on Monday and we will have a consult with GI on Tuesday and Matt will have a Gastroscopy and Colonoscopy on Wednesday under general anaesthetic.

This has happened so fast my head is spinning. I am trying so hard to convince myself that since his symptoms have been so mild that they aren't going to find too much wrong and it will be easily treated.

Riding the emotional roller coaster big time and I just want to get off. :(:(:(
Dusty xxx
 
bushydougie

bushydougie

Oh Dusty! So sorry to hear about what you and your family are going through. My thoughts are with you all at this difficult time. I truly hope that Matt's tests prove negative but if he does have CD he couldn't have a more supportive mum to help him through this :)
Take care of yourselves
x
 
Crohns08

Crohns08

So sorry to hear this! You've always been really supportive of me, it sucks that your son might have this terrible disease too.
 
Cat-a-Tonic

Cat-a-Tonic

Super Moderator
Aw Dusty, how awful. I agree with everyone else in that he couldn't have a more supportive mom. Hopefully he'll be able to get into remission and lead a fairly normal life, as it sounds like Roo has been able to do (and hopefully he can get there but avoid surgery). Sending hugs and happy thoughts your way.
 
B

BigUglyCat

Dusty, darling of our site, thoughts and prayers are with you as you face this difficult time. I've always thought that as frustrating as this disease is for those of us who suffer directly, it is the people who love us who indeed suffer the most. Wishing you the power and the strength to see you and your family through.
 
B

BLM

Hugs Dusty!! My heart goes out to you, especially seeing my own child go through it.....I couldnt imagine two of them dealing with this. Especially during the holidays this news is unfortunate.....Try to remember what blessings they are and be thankful to have them....even if they are ill. Hugs~
 
crohnicaly stinky

crohnicaly stinky

Dusty a big hug from me! I hope Matt doesn't have CD but even if he does, he should know that he is still very lucky, lucky to have you, a great Mom! I can't imagine how hard it must be to deal with this. Hang in there Dusty!
 
Procyon

Procyon

I'm sorry to hear about all those. Hopefully you guys get some good news soon. Crossing my fingers that things will turn out for the best. :)
 
Silvermoon

Silvermoon

Moderator
BigUglyCat said:
.... I've always thought that as frustrating as this disease is for those of us who suffer directly, it is the people who love us who indeed suffer the most. Wishing you the power and the strength to see you and your family through.
Click to expand...
As I said in PM, I totally agree.... there are many days I think it is WAY easier to be the "patient" than the "mum"......


BLM said:
....My heart goes out to you, especially seeing my own child go through it.....I couldnt imagine two of them dealing with this....
Click to expand...
We have heard many a mum state "I would far rather go through this than have my child go through it"... I am 38 and my mom STILL feels the same....lol :) .

I was diagnosed 24 years ago.... and my brother was diagnosed 22 years ago.... and was diagnosed as SOON as he started showing signs rather than waiting to "see if it gets better".... and has only had one episode since being diagnosed.....

Even if it does come back that he has IBD, he has a wonderful mum that is going to be able to help in so much, and a sister who is going to be better able to empathize and help him through the tough times.....

Sending big squishy hugs and calming thoughts from across the pond.....
 
DustyKat

DustyKat

Super Moderator
Oh man, what a week.

Well we are finally back from Port and the results are in..............Matt has Crohns.

He had a consult with the GI on Tuesday and then went for his Gastroscopy and Colonoscopy on Wednesday. The GI spoke to me after the procedure and said they didn't find anything they didn't expect, that being CD in the terminal ileum. His large bowel is clear and there were no abnormalities in his upper GI tract. He then sent him for a CT Enterogram on Thursday as he did not want to push through the area to see how far it extended. We had another consult today and the CT showed the CD is confined to the terminal ileum and extends for 100mm (4 inches), there are no abscesses or fistula's. He has no symptoms of obstruction.

He has been commenced on Prednisone 40mg for 3 weeks and then taper 5mg every 5 days, Imuran 50mg daily and Flagyl 3 times a day for 1 week. When his TMPT test comes back, and if all is okay, they will increase the Imuran to 100mg. He is to go back to the GI later in January. If the tablets have done the trick (so hoping they do) then we continue with that, if not the GI will apply to the government for Matt to commence on Humira.

He is struggling at the moment, as we all are, and I don't think being away from home and poked and prodded to the nth degree helped.

Feeling numb, :(:(:(
Dusty
 
DustyKat

DustyKat

Super Moderator
I don't know what to say, I can't thank you all enough for your kindness and support.

To cut a long story short Matt has been diagnosed with Crohns in the terminal ileum. Matt is struggling mentally, as we all are, but is doing well physically. I just hope and pray the medications do the trick and now that he is home again he will feel more at ease.

Thanks again everyone, :hug:
Dusty
 
Dexky

Dexky

To save time...Ask Dusty!
Location
Kentucky
Dusty, I'm so sorry!! I know you are devastated but at least it has been found quickly. That's very similar to EJ's pred taper. I hope it does the trick. Try to get some rest. I know you've had a rough three weeks now.
 
Dallies

Dallies

Dragonfly
Dusty,
I know Matt being diagnoised is a massive blow sweetheart but I am relieved that he has a firm diagnosis and is being treated. I send you all the love in the world and think of you often. I am here for you just as you have always been for me. xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
 
L

Lulu

Dusty, I have been following your story and am so sorry to hear about your son. So glad you were aware of what he symptoms may have been and were able to get him seen so quickly.

I have wondered how prevelant siblings having crohn's is. I have two brothers who so are have exhibited no problems although according to one brother it is because he never gets close enough to me to catch anything! Just shows the level of ingorance surrounding crohn's.

I am interested in the tapering of the steroids the GI has put Matt on. It seems all doctors seem to have different ideas. I have only recently started Pred although have been on Mesal for 12 months now and when that didnt appear to be helping I was started on Imuran, now at a dose of 100mg. Doctor says that hasnt helped either so he started a course of pred to try and get the inflammation under control. I initially took 2 25mg tablets a day for two weeks then 1 1/2 tablets a day (so 37.5mg) for 2 weeks then will drop down to 1 tablet (25mg) a day for 2 weeks and finally half a tablet (12.5mg) a day for the 2 weeks then finish. This seems to me like a big drop in dosage compared to a lot of people. Could this me because I have been asymptomatic since the initial problems and if the blood tests didnt continually show that I have a very high CRP then no one would even know I have crohn's.

Also my GI told me that he doubts I would be approved by the PBS for Humira if the steroids dont work as 'I am not sick enough'. So will be interested to see how Matt goes with his treatment.

Will be following Matt's progress with interest. At least he has Roo & yourself for great support as I am sure he will need you both to deal with this.
 
G

Guest

oh heck.. i'm sorry he has Crohns, but i guess at least you all now know what's been causing his symptoms, and you have a wealth of experience with this condition already.. also it sounds confined and not too severe, so hopefully the meds will calm things down very quickly and give him his quality of life back.
 
DustyKat

DustyKat

Super Moderator
@ Dex. Certainly a different story between the two! 18 months as opposed to 2 weeks.

@ Lulu. Hey Lulu, The GI said to me there was a 30% chance of a siblings having IBD. Matt's second cousin that has CD has two brothers that have no IBD I think I convinced myself that Roo was it in our family, I now know how wrong that was. ;)

The only circumstances that I have dealt with Pred have not been related to IBD but nonetheless they all involve tapers of 5mg at a time, so not sure with your GI. I don't think the lack of obvious symptoms would have anything to do with the way you taper off Pred. The GI today seemed to indicate that it would just be par for the course that approval, for Humira, would be given if he applied for it. To be honest Matt hasn't been that sick, other than a couple of random vomits he has only had his raised CRP and twinges in the RIF area as symptoms. If Roo didn't have Crohns I wouldn't have asked for inflammatory markers to be done and under different circumstances I wouldn't even have taken him to the doctor as his symptoms were so mild.The pain couldn't have been that bad since every time they palpated the area he didn't flinch and would just say ~ yeah, it's a bit uncomfortable there.

I hope all goes well for you and the meds kick in and get the CRP under control. Keep us posted!

Dusty. :)
 
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georgiegirl

georgiegirl

Oh Dusty I'm so sorry you have to deal with this AGAIN!!! But at least you know what you're doing - you've got a wealth of experience and I'm sure you can handle this. You're so competent!!!

Sending you and your family the BIGGEST of hugs!!!
 
Jessica

Jessica

Dang it, Dusty. I'm so sorry. I know that you're strong, but I know this has to be taking it's toll. Remember that you are a wonderful mum. You can get through this. We're all here to help! <3
 
R

Rob

That's crap
pity it couldn't of jus been a nasty bug that a pill could of fixed
but atleast you now know what it is an with past experiance with roo you know how to handle/approach things
good thing you were on the ball an dx it quickly, now maybe he can slow things up an get into remission quickly

Best wishes to ya all dusty
 
Cat-a-Tonic

Cat-a-Tonic

Super Moderator
Dusty, so sorry to hear your son has Crohn's too. I don't have children of my own but I can imagine it would be heartbreaking to go through something like this. My thoughts are with all of you, and I hope he can get into remission quickly. Sending lots of hugs your way!
 
Rebecca85

Rebecca85

Location
Nottingham, UK
Sorry to hear he has Crohn's, but at least you know what's going off, and it sounds like you've caught it early. Let's hope the meds work, and he gets remission soon!
 
bushydougie

bushydougie

So sorry to hear this news Dusty. I was really hoping that it was something else...
At least he has a fantastic, supportive mum and a sister wih whom he can discuss and vent about CD with.
Please make sure that you take care of yourself as well as your children. It's been a tough few weeks for you too!
x
 
crohnicaly stinky

crohnicaly stinky

Dusty,

Sorry to hear about Matt's dx of Crohn's. With just a little luck the meds they give him will keep him in good shape and he'll be able to follow his dreams. I know it's hard to take and it's a bummer and it changes the way you see life. Heck I gave to the Jerry lewis telethon this year for the first time in along time,. why? because I just said to myself hey now I know what it's like to have a disease. So it changes your perspective a little but by all means Matt can do so many great things and this is not the end at all. It's tough right now but you will all manage, all of you and be just fine! Hugs to you Dusty you're a great lady and I hate seeing you go through this. It's probably harder to imagine abdominal pain than it is to grit through it, so you as a care taker have it rough in that regard. But just be at ease some, he can find his peace with CD and do great things with his life!
 
K

Kathryn

Dusty,

I'm sorry that Matt was diagnosed with CD, too. You're one hell of a mom and I have no doubts, from reading your posts on here, that you'll take this, like Roo's disease, in stride with class, knowledge and only the occasional freak-out.

You and your children are in my thoughts. :)

-Kathryn
 
A

amirah

dusty... sorry to hear your son has crohns aswell thinking of you and your family always.

love amirah and leya
 
ameslouise

ameslouise

Moderator
Hi Dusty - So sorry to hear this news. Having already been thru it doesn't make it any easier as a parent, does it?

Sending big hugs your way. Hang in there. You are a wonderful Mom and at least your son is lucky in that regard.

xo - Amy
 
C

Christy

I hate that this happened for your son. He is lucky, yes, to get such a prompt diagnosis so the care could begin, but still .... it just absolutely sux that your family has to deal with so much. Not fair, not fair at all.
 
Nica

Nica

Dusty,

I am so sorry your son has it. I feel for you. If there is anything I can do please don't hesitate to ask. Thinking about you and your family.
 
B

BLM

Big Hugs Dusty!! I know how you must be devistated, but atlease youve been through it thus far. Your a step ahead with Matt, unlike your surprise with Roo!! Keep the faith and just know that Roo and Matt will become so much closer, and a wonderful support to eachother. You and your family are in my thoughts and prayers~
 
DustyKat

DustyKat

Super Moderator
Thank you D, Mayflower, Stinky and Kelly.

Your kind words, thoughts and wishes truly have helped me these past few days. I still feel like I am in a fog but I guess as time passes the fog will eventually lift.

Love to all, :hug:
Dusty
 
DustyKat

DustyKat

Super Moderator
Thank you so much guys!!!

Reading your words really does ease the pain and give me hope that we will triumph over this. Matt is feeling better and has next to no pain now so that is good, perhaps a sign that things are settling. Thanks again for your wonderful support, I feel I can start and believe in myself.

Lots of love, :hug:
Dusty
 
S

STLGirl

Sweet Dusty,

I can so relate to your motherly pain. When your babies get sick (no matter how old they are), the pain of a mother is unmeasureable. It's the worst gutted worry I have ever felt. So from one mother with a previously sick child to another please know that I feel your pain too. You and your family are in my thoughts and prayers.
 
L

lynx

Dusty I have been following what has been going on and you and yours are in my thoughts and well wishes. It sounds like he is doing ok now. I hope he stays that way for a long, long, long time to come!
 
Mountaingem

Mountaingem

Hi Dusty-I'm really sorry to hear your son's diagnosis! But I'm glad he's getting the right treatment and on the road to recovery at last, that waiting with no answers is just unbearable on any parent, much less the patient!

Sending hugs and healing thoughts to your family! :hug:
 
Astra

Astra

Moderator
Hiya Dusty

I've been off line for a few weeks
so sorry to hear this news about Matt, but he'll do just fine with a Mum like you!
And the Pred will work wonders on him, it saved my life, it's a fab drug.
big hugs to you all, stay strong Dusty, you're doing just great!
xxx
 
DustyKat

DustyKat

Super Moderator
Thanks again everyone for your well wishes and support. :rosette2:

Matt seems do be doing well physically but psychologically still struggling a bit. Still has a little bit of pain at times, he went to the GP for bloods yesterday and he can still palpate a mass. Got the blood results today and they look good. White cell count is up but I assume that is the Pred as the doc or GI didn't say anything about it. ESR up a bit as well but still in normal limits. CRP is back down to 52 and Haemoglobin is down. I picked up copies of all his letters and results as well and found the biopsy results. They couldn't find any granulomas in the tissue samples but still said they were indicative of CD. The small bowel showed mild disease and the terminal ileum showed very mild disease, YAY! I was so hoping there would be something positive to come out of all of this.

Continuing to keep my fingers and toes crossed that he responds well to treatment.

Thinking of you all, :hug:
Dusty
 
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Jerman

Jerman

Hi Dusty, I have not been on very often so just found this thread. I can only imagine your grief when finding out both of your babes have this awful disease. I hope with all of my heart that the three of you are symptom and pain free very soon. Sending you a big ole jerman hug ((((((((((HUG)))))))))))
 
Manzyb

Manzyb

Hey Dusty!!! I have been thinking of you, Roo, and Matt.

That is great to hear that he has mild disease (well, not great, but since he has to have the darn disease, at least it's mild!!!) I am sending plenty of well wishes. I hope he responds great to his treatments and gets back into action soon.

Does he feel much comfort talking to Roo about different experiences and things like that?

BIG HUGS DUSTY!!!!!!

amanda
 
Dexky

Dexky

To save time...Ask Dusty!
Location
Kentucky
Hey all, I just got a note from Dusty. Apparently Matt is having abdo pain again and has been admitted to hospital. Had bloods, X rays and Ct scan. No change from last time and no sign of obstruction. They rang the gastro doc and he said he is most likely just having a flare so be in for a few days of IV antibiotics and hydrocortisone.
 
lseibert

lseibert

Location
Utica Michigan
Thanks for the update, I'm so sorry to hear that Matt had to stay in the hospital. Hope that he will be out quickly and home for the holidays.... :)

:getwell::getwell:
 
C

clearwell

Thanks for the update,Lots of love to Dusty and her family and hopefully things will go well for Matt and he will be home soon.xx
 
DougUte

DougUte

Oh Dusty, I am so sorry to see this thread. Just know that you and your family are in our prayers. It sounds like they caught it early.
 
Dexky

Dexky

To save time...Ask Dusty!
Location
Kentucky
Matt is still in the hospital. More news from Dusty....


He continues to have IV antibiotics and Hydrcortisone. He is feeling good physically but struggling psychologically with being here and with the surgeon talking about him being on an elemental diet for a couple of weeks...........hmmmmm just not the right time of year for hospital and liquid diets!

The surgeon is a locum but seems very knowledgeable about CD and Dr Gillespie is happy with the treatment plan. The surgeon is an English guy and had a lot to do with IBD in a gastro unit in Cambridge. He looked at the scans and he said there was a transmural perforation, albeit very small, and that's what caused the pain plus inflammation of the adjacent muscle which accounts for the leg/groin pain. His CRP was 352 Saturday and his white cell count was 23.1 but were significantly reduced yesterday.

Matt says he is feeling much better but that only adds to his desire not to be here!
 
Manimation

Manimation

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.
 
DustyKat

DustyKat

Super Moderator
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
 
F

fateful_one

Holy Crap

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:)
 
georgiegirl

georgiegirl

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!
 
DustyKat

DustyKat

Super Moderator
Home at last!

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, :hug:
Dusty
 
Manzyb

Manzyb

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!!!
 
My Butt Hurts

My Butt Hurts

Squeals-a-lot!
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.
MBH
 
Jerman

Jerman

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.
 
DustyKat

DustyKat

Super Moderator
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
 
Dallies

Dallies

Dragonfly
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
 
mario

mario

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
 
DustyKat

DustyKat

Super Moderator
Hi Ho Hi Ho it's back to hospital we go!

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! :ylol:

Lots of love, :hug:
Dusty
 
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DustyKat

DustyKat

Super Moderator
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. :eek:
 
G

Guest

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
 
Dexky

Dexky

To save time...Ask Dusty!
Location
Kentucky
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!!
 
S

STLGirl

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.....
 
DustyKat

DustyKat

Super Moderator
Thanks Ding, Dex and Sara........:hug:

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! :lol2:
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
 
G

Guest

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
 
Dexky

Dexky

To save time...Ask Dusty!
Location
Kentucky
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!!
 
Astra

Astra

Moderator
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
 
Manimation

Manimation

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!
 
DustyKat

DustyKat

Super Moderator
Awww thanks guys! :blush:

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?
Click to expand...
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?
Click to expand...
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, :hug:
Dusty
 
Zalanicht

Zalanicht

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
 
DustyKat

DustyKat

Super Moderator
Hey Zal! Hope all is going well with you and you are keeping well........:):):)

Yeah Dex, If she hasn't dropped by to see him she has been ringing and engaging him in some pretty one sided, mind numbing conversations! I swear that girl can talk under water with a mouth full of marbles! But really she as been fab with him, I whacked him in a wheelchair yesterday and we went up the town and had lunch and a few hours out just the 3 of us, it was lovely.

Matt continues to do well and he is looking better at present than he has for quite a while, so hoping it continues that way!

Dusty. :)
 
AZMOM

AZMOM

Moderator
Dusty - I'm so glad things are looking up for Matt. You are one strong Momma!!!! And I'm going to have to borrow that phrase "can talk underwater with a mouth full of marbles" - that's a good one!

Julie (Claire's Mom)
 
DustyKat

DustyKat

Super Moderator
Thanks Ding, Dex and Julie..........

Well Sunday afternoon here and we are patiently awaiting the sinogram tomorrow. The docs said today that it is in the morning so that's good!

Matt is feeling well and has developed the steroid munchies, which is just as well 'cause he's thin as a stick and he now actually has more colour in his face than Nicole Kidman! :ylol:

Will keep you posted of the outcome and with any luck will be discharged in the next couple of days ..........woohoo!!!

Dusty. :)
 
Entchen

Entchen

Chief Dandelion Picker
Just checking in, Dusty. What a tough road for Matt so early on in diagnosis; how helpful for him to have you all along for the ride.

Thinking of you!

-Kelly
 
Manzyb

Manzyb

I'm glad he's got the steroid munchies!! I remember last year when i was really sick in the hospital and finally felt like eating! My husband brought me cheesecake every day :0)

I hope you guys get some answers and he gets to get the heck out of there! (feeling great of course).

Hugs to you guys!
 
DougUte

DougUte

Hey Dusty, glad to hear things are progressing, and that Matt should be released this week. Hope things continue to go well.
 
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