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Night before procedure day

amirah

Banned
Hi, well tomorrow my little princess will being having biopsys and 2 camers done,
im so nervious and scared for her, infact im sick to ma stomach. is this normal? or do you think im over reacting?
i just hope we find out tomorrow an dont have to wait, all i want is to get her sorted an pain free and comfortable.
can i ask you ? is there any questions you think i should ask? as my mind always seems to go blank .
anyway sorry for going on and on. x x x
 

Silvermoon

Moderator
I don't have children, but I am thinking it is probably a normal feeling. And I definitely don't think you are over reacting at all (((((((((((((((((( amirah )))))))))))).

Not sure (right now) about what questions to ask, but some really good ideas we have come up with for ourselves is: when you DO think of a question, write it down, maybe in a small notebook you can carry in your purse or something.... then, when you DO see the doctor, you will remember to ask.

It is very normal to forget things when you see them face to face, as there is so much going on, and they tend to give YOU lots of stuff to think about too. So don't at all feel bad for having "brain farts"... that is pretty normal. :)

I wish I could offer you so much more, but at least something is being done for your little one. Hopefully some answers will come of it.

And don't EVER feel sorry for going on and on. Sometimes we don't have answers for you, but we are always here to help.

(((((((((((((((((((((((((amirah)))))))))))))) sending heaps of warm hugs and wishes. Let us know how it all goes...
 

DustyKat

Super Moderator
im so nervious and scared for her, infact im sick to ma stomach. is this normal? or do you think im over reacting?
YES!!!!!! this is definitely normal. Roo is 18 and has been in remission for 4 years and I'm still worrying! So if anyone's over reacting it's me! Seriously though amirah I think there would be something wrong if you weren't sick to your stomach. She is your baby and will always be your baby and this is a very normal part of being a Mum when our kids are healthy let alone when they're not, in fact I think worry is one of the things we do very well at.

I guess the main question I would ask at this point is - when will we know the results - the waiting is the hardest part but if you have some idea of when you will have an answer it at least it gives you some focus. Then based on the results the next question either way will be - where do we go from here.

HTH, :)
Dusty
 
Hi Amirah, I write everything down in a notebook I carry in my purse. My daily symptoms, foods I eat that day, and any questions I need to bring up at my next appointment. It is soooo normal to be nervous:) Good luck to you
 
Yes it is definetly normal to feel the way you do. everything you are feeling is normal and expected trust me. When Madasin goes in for procedures kelley and I are the same way. i hopeyou find something out tomorrow too. Hopefully they dont make you wait until biopsies are all back. Which is what they do to us everytime.
 

Dexky

To save time...Ask Dusty!
Location
Kentucky
Amirah, I have lost 40 pounds to worry since EJ's dx. It's not just a Mum thing. Dads feel the same way. It's perfectly normal!!! If you didn't worry, you would not be normal!! I hope they find out what's going on so you all can start fighting back with an informed dx.
 

Crohn's 35

Inactive Account
Amirah, I have a young daughter who was in the hospital many years ago and when they put the IV in I cried and couldnt watch. Watching your child even just sick with a cold makes a mom or dad be scared too. WE want to know how it turns out so please let us know and huge big hugs to all of you and a flower for your precious one.:rosette2:
 

amirah

Banned
thanks everyone for your kind messages,i didnt sleep last nite with worry,
anyway my princess is going down sometime this afternoon.... so fingerscrossed all goes ok .will let you know x
 

DustyKat

Super Moderator
Thinking about you and your little princess................


:hug::ghug::hug::ghug::hug::ghug::hug::ghug::hug:


Dusty.
 

amirah

Banned
well my little girl had it done at 3pm this afternoon, they did 2 cameras and 8 biopsys, she also had bad reaction to the general they gave her. unfortunatly we wont know anything till biopsys come back
 
Last edited:
I am glad the test our over for you. Hopefully results come back quickly. we are thinking about you and your princess!!!! Did she run a fever from the general?
 

Dexky

To save time...Ask Dusty!
Location
Kentucky
well my little girl had it done at 3pm this afternoon, they did 2 cameras and 8 biopsys, she also had bad reaction to the general they gave her. unfortunatly we wont know anything till biopsys come back
Keep us updated Amirah!! I'm glad that's all over for her!!
 

Crohn's 35

Inactive Account
Waiting is the worst part sometimes, depending on some, they can take a least a week or more. Hopefully your little one is coping. Lets hope they find some answers! Please keep us updated!
 

amirah

Banned
Hi gypsigirl . yes she ran temp of 104.5 for over 24hours and had problems with her heart rate and breathing.
thankyou so much for all your kind thougths and wishes it mean so much to us.
 
Hi amirah, That happens to Madasin everytime she has went under for procedures. She has had four colonoscopies and endocopies and every single time she comes out with a fever. This last time August 3 it was 103.8 for a few days before it finally broke, a few times she had to have oxygen when she came out of OR.
Maybe it is because of the general and the fact that they are so little. I am not sure.

How is she doing now?? You and your princess our in our thoughts and prayers always. My heart goes out to you, we know what you are going through. If you need anything please feel free to ask.
Take care
lots of hugs
 

amirah

Banned
Hi all, we saw the Gi today as my little princess had started bleeding again, they have said there going to rush the biopsys though quicker.
How long does it usually take?
 
hi amirah, I can only tell you from our experience, they always say it will take 5 days for byopsies to come back sometimes longer depending what kind of testing they are going to do. Is your princess still in the hospital??
 

Dexky

To save time...Ask Dusty!
Location
Kentucky
Amirah, do they think the bleeding is because of the scopes and biopsies? Hope they can rush the results!! Poor girl!!
 
I hope she is okay and everything works out. Please let us know when you get the test results.. We are praying for you and you are all in out thoughts.
 

amirah

Banned
Hi dexky , she had the bleeding before so i think it aint from the scopes, thanks gypseygirl i just hate waiting for these results... yeah she is stil in hospital as she aint stable enough to come home as she has lost too much weight , she is now 16months and is in age 6month clothes.gypsigirl? hows madisin? hope she is better. a big thankyou too all of youx
 

Dexky

To save time...Ask Dusty!
Location
Kentucky
Did they say anything about what they saw on the scopes? When EJ had his they said they saw old scars from activity in his stomach.
 
I know it is tough as a mom to see your child like this and it is very worrisome...please just hold your head high and stay strong for her...she needs her mommy. i am hoping the best for your princess. she is in our thoughts and prayers. keep us updated. and remember we are here to support you when you need it
best of luck and best wishes to you and your beautiful princess
 
Hi amirah, The weight is a hard thing to keep on when they are sick. Maddie is 2 years old and when she got sick at 18 months she was wearing size 2T. But since she got sick she now wears a size 18 months because of the length but can fit into 6-9 months if the length was not to short. it can be very nerve racking waiting for results to come back. I feel for you so much and I am praying my heart out for you little Princess, What is your princess's name? Please let us know when you find out about test. We are all here for you....... Take care and give your princess a big hug from all of us!!!!!!!!!!!!!
 

DustyKat

Super Moderator
Thinking about you all. Hope all is OK...........

:hug::hug::hug::hug::hug::hug::hug::hug:

Lots of love,
Dusty
 

amirah

Banned
just a quick update thing are not going so well, she has got more sick and worse,will go into more detail when i know more
 

DustyKat

Super Moderator
Oh amirah that is so sad to hear. Thinking about you all.......


:hug::ghug::hug::ghug::hug::ghug::hug::ghug::hug:


Get well soon little princess,
Dusty
 

amirah

Banned
thanks everyone for your kind words, things are pretty much the same but hopefully we should hear soon from the biopsys and sort her out,
it just seems to be taking so long and the not knowing is eating me upinside.
 
Amirah I am so sorry to hear that you are still waiting for test results. I know it can be irratating and upseting waiting while sheis suffering. I wish there was a way to help. I have to say I am not surprised at all that you are still waiting to hear something. It always amazes me how they can just sit and watch children suffer without trying to rush the testing.

I hope you hear something very soon, and please keep us updated

You and your princess our in our thoughts and prayers always
 

amirah

Banned
Hi all , just an update on my princess, she is still in hospital,she is still not eating and has lost too much weight now.... anyway where due to see the gi tomorrow morning and im hoping and praying that he will come with some news in his hands.
will keep you updated.
 
Wow amirah I am so sorry that you still dont know anything and that your princess is still not eating and is losing weight. I cannot believe (oh wait yes i can) they still have not told you anything about the testing... update as soon as you can. good luck

thoughts and prayer to you and your princess
 
i hope you finally get some news. if not i would deffinatly be asking for the hospital administrator and the supervisor of the practice the GI is in. you can also request to speak w/ patient advocasy they will also contact supervisor. you will have a better chance than waiting on your own to finally get some answers and hopefully relief for your princeess.
 

amirah

Banned
arrrrrrrrrrgggggghhhhhhhhh i really give up! this hospital is just a joke, its like they dot give a toss, i sat here all day asking when the Gi is coming and i got he is on his way... did he turn up? NO. im boiling up and loosing my paients now.
does anyone know a good hospital or doctor in the uk i would be very greatfull.
im at my whits end cant take much more
 
amirah I am so sorry that they still are giving you the run around.... I am not from the UK so I do not know but I am sure someone will come along and let you know something. I hope your princess is doing some what better. I wish they would just tell you something.

I am thinking about you both and youare in my prayers....

please update as soon as you can

lots of hugs and love to you both
 
I know this is frusterating but dont give up she needs you! i am so sorry you are having such a hard time. i really hope things start to look up for her! and for you as well. keep us posted. you and your princess are in our thoughts and prayers
 

DustyKat

Super Moderator
Hi amirah,

Have you heard anything yet???

Keeping you in my thoughts and prayers.......................

:hug::ghug::hug::ghug::hug::ghug::hug::ghug::hug:

Take care,
Dusty
 

amirah

Banned
HI Dusty cat, no news as of yet leya is very weak and is having a bad day todaythey had to put her on a drip an replace the feeding tube to try to feed her.her diarrehea is realy bad again she went 13 times yesterday.i just want to say a big thankyou to everyone as you all have been so kind and caring more than the hospital.
 

Crohn's 35

Inactive Account
Awe poor thing, I hope she gets out of the hospital and gets better soon. Some hospitals, need to have a bit more compassion, I have been to a few and I even had to report a nurse and they dealt with her pronto! Big hugs to you both ok ((hugs))!!!
 

amirah

Banned
Thanks jetta lady, its really hard as she has now been here more than 3 weeks and i dont see any improvment, just dont know what to do for the best
 
Hi amirah, oh your poor princess, my heart goes out to you both and i sure hope they tell u something. we are praying for your princess daily

lots of love and hugs
 

Dexky

To save time...Ask Dusty!
Location
Kentucky
Amirah, are you still waiting on the results from the biopsies or have you got those already?? Has Leya been seen by the GI since the tests?
 

DustyKat

Super Moderator
Hey amirah,

Have they given some sort of time frame as to when they will know the results?? If you haven't already, start badgering them and don't let up! So sorry to hear that your baby is still suffering........


:getwell::getwell::getwell: PRINCESS.


Thinking of you all, :hug::hug::hug:
Dusty
 

amirah

Banned
ok just a quick up date thats if i can write, leya took a turn for the worst and was in so much pain plus the blood started, so i didnt keep my cool i started screaming and shouting and demanding that they do a scan to check her..... so where waiting now to go get a scan to find out what else is going on.
will keep you updated im so not myself i cant think straight
 

amirah

Banned
ok where waiting for GI to come to see me as the scan has shown something up ..... so will keep u posted when i know more:confused2:
 

amirah

Banned
we have just seen Gi and we are waiting to see another doc, but its looking like there going to take leya down to theater, the on call doc said they think she has a blockage or something.... dont know exactly what he means all i know is that there preping leya for theater incase this 2nd doc thinks she need to go down to theater. this is all to much my mind cant get round all this info in one go... im going out my mind and i cant get hold of my husband or anyone so this is the only place i feel comfort if that make sense.will keep you updated when i can
 
Hi amirah, I am a little confused as to what you are saying. So they think that leya has a blockage? They are just deciding this after this many weeks?? this should have been something they spotted doing the testing you would think. Now does theater mean the operating room. Is that what they call it in the UK??

I am praying for leya and for you. Keep you head up and you will get through this. I am thinking about you both. thanks for the update

lots of hugs to you both
 

Dexky

To save time...Ask Dusty!
Location
Kentucky
Amirah, I hope you have been able by now to contact your husband first of all and find out what's going on with Leya. Please let us know as soon as you can. I hope everything is okay!!!
 

DustyKat

Super Moderator
Hey amirah,

Sending you my thoughts and prayers and hoping everything is OK with leya. :hug::hug::hug:

@gypsi, yes theatre is the operating room.

Dusty.
 
Hi Amirah

I hope all is going well for Leya.... In our thoughts and prayers go out to you and leya.
Get better little princess


dusty--- Thank you for that information, I thoughts so from the reading the post but was not sure. lol
 

amirah

Banned
Hi all , sorry ive not been intouch, things have been really crazy, scary, and stressfull and to be honest ive not been coping really well,
Anyway an update from last time leya ended up in the operating theater for over 4 hours, when the opend her up the found her intestines have twisted together to form a mass, also she had so much inflamation they have stated her on steroids,
Leya is out of intensivecare and is now in hdu but hopefully will be on a normal ward soon (fingers crossed).
They have said it is mostly likely she has crohns but will need to comfirm with some more test.
I just want to say a massive thankyou for all your support, i dont think i would be here today without your caring and support.oh and leya says mauh to you all(big kiss)
 

Dexky

To save time...Ask Dusty!
Location
Kentucky
Oh Amirah, I'm sorry to hear all of this has happened!! What did they actually do about her intestines? I hope she is ok!! Keep us updated if you can!!
 

DustyKat

Super Moderator
I know what you mean amirah, I have been there and my heart goes out to you. You must be so physically and emotionally drained and hey I wouldn't expect you to be coping well after all that you have seen your baby go through.

I hope and pray that Leya's recovery is speedy and eventful free. Please keep us posted and if you have any questions just ask! We will help if we can. Sending you tons of healing (((THOUGHTS))) and (((HUGS)))...............


:hug::ghug::hug::ghug::hug::ghug::hug::ghug::hug:


:getwell::getwell::getwell: Little Leya. :):):)


:hang:

Dusty
 
Hi Amirah, I am so glad that they figured it out.... I sure hope leya is okay now and things start to get better for her. How did they fix her intestines??? Did they say what caused that to happen? Sorry for all the questions. Please give leya a kiss and hug from me. I am thinking about the two of you and wish you the best...
 

amirah

Banned
Just aquick update as leya is sleeping, she is still in HDU and now has infection so they have put her on IV antibiotics.
As for crohns on doc is saying it is and another doc is saying it isnt so where back to square one. its so frustrating.
 

Dexky

To save time...Ask Dusty!
Location
Kentucky
What does the other doc think it is? If not crohns? I'm sorry for all you and Leya are going through!!
 

DustyKat

Super Moderator
Hey amirah,

Sorry to hear you still have no answers. Have the doctors told you what the next move is?

Thinking about you all, :hug::hug::hug:
Dusty
 
hi amirah
Sorry to hear you are still at square one,, We know the feeling and I agree it is frustrating to no end.. I hope leya starts feeling better. I wish they would just figure it all out for you, You are both in my thoughts and prayers. i wish there was a way to help you through this. We are all here for you!!!
 

DustyKat

Super Moderator
I have just had a message from amirah and she is too upset to post at the moment so has asked if I will update everyone. As amirah has said Leya is back in intensive with a severe infection complicated by her depleted immune system. The next 48hrs are critical as to what the outcome will be.

We are all thinking of you amirah and your little girl. Our hearts, thoughts and prayers go out you at such a difficult and distressing time. You will be in my thoughts as you hold and comfort your little princess..................

:getwell: angel

:hug::hug::hug:
Dusty
 
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