Matts Story
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Hi all, so sorry for not having been on to update these past few days. Just feeling very down and anxious right now. Thank god for Dan being off this week.
Matts CRP has continued to raise, all be it slowly, since his second infusion. It has been decided that he will undergo surgery on Friday. They will do what they need in order to get the little man back to good health. Praying he comes out of it without an Ileoostomy, but no guarantees.
Ella's CRP has also raised to +100. We saw the gastro yesterday in outpatients to discuss her condition. He seems to think that she too may have some form of IBD. She will have both an upper and lower scope under GA next Monday. I'll spend the weekend at home (Dan here) to help with the prep. Poor love. I'm even thinking of taking some myself just to be with her and feel her pain!
I feel so damn guilty for inflicting 2 children with this bloody disease. We're still trying to figure out a trigger point and all we can come up with is that we went to Egypt on holiday last November- we ALL had a bad tummy on return. Neither of them have ever properly recovered. They've been tested for C Diff, and any other bacterial infections, and they have all come back clear. Could they have been carrying this all along and that the tummy bug just set it off? Gastro is non commitant to give any definitive answers with regards this.
I cant sleep for worrying. Its never out of my head that my children have to be burdened with this damn disease for the rest of their lives. Both Dan and I had good/normal childhoods- will this be robbed from my kids? So many questions and no proper answers.
I'm sorry for complaining away. This is probably why I've resisted posting in a few days.I just want to wake up one morning to find this has been a BIG bloody nightmare!
Nic xx
Matts CRP has continued to raise, all be it slowly, since his second infusion. It has been decided that he will undergo surgery on Friday. They will do what they need in order to get the little man back to good health. Praying he comes out of it without an Ileoostomy, but no guarantees.
Ella's CRP has also raised to +100. We saw the gastro yesterday in outpatients to discuss her condition. He seems to think that she too may have some form of IBD. She will have both an upper and lower scope under GA next Monday. I'll spend the weekend at home (Dan here) to help with the prep. Poor love. I'm even thinking of taking some myself just to be with her and feel her pain!
I feel so damn guilty for inflicting 2 children with this bloody disease. We're still trying to figure out a trigger point and all we can come up with is that we went to Egypt on holiday last November- we ALL had a bad tummy on return. Neither of them have ever properly recovered. They've been tested for C Diff, and any other bacterial infections, and they have all come back clear. Could they have been carrying this all along and that the tummy bug just set it off? Gastro is non commitant to give any definitive answers with regards this.
I cant sleep for worrying. Its never out of my head that my children have to be burdened with this damn disease for the rest of their lives. Both Dan and I had good/normal childhoods- will this be robbed from my kids? So many questions and no proper answers.
I'm sorry for complaining away. This is probably why I've resisted posting in a few days.I just want to wake up one morning to find this has been a BIG bloody nightmare!
Nic xx
Nic!! You can't inflict your children with IBD!! We all have gone through the self blame game...trust me! Nothing you did or fed your children caused this! The docs will get them sorted soon and their childhoods, though forever altered, will be good. You'll see!
I know this weekend is going to be especially hard on you! Having to leave Matt so soon after his surgery and convincing a toddler to drink that nasty prep...ughhhh!! We're all here for you mom! Hang in there! There's light at the end of this tunnel!!
I know this weekend is going to be especially hard on you! Having to leave Matt so soon after his surgery and convincing a toddler to drink that nasty prep...ughhhh!! We're all here for you mom! Hang in there! There's light at the end of this tunnel!!
Oh Nic. You can't blame your self, but I know the feeling. My son became ill after getting his stainless steel orthodontal braces. His teeth weren't even that bad at all. But it seems that every kid in US gets braces. We removed them after a few months and he started to improve. After another few months he was even totally symptom free for 10 days (August 2009) ... then we had titanium braces put on. The very next morning he started to complain. He also caught a cold. Went downhill quickly and has not recovered yet. I still feel guilty about the braces. My teeth are crooked as are my husbands. The braces definitely helped trigger something, somehow. (I also beat myself up over the other potential 'triggers' like the prophylactic antibiotic he took when his brother had meningitis, or the Boy Scout camping he went on where he came home sick) I think you just have to accept that you cannot simply keep your kids in a bubble their whole lives, and as parents you always try to make the best decisions you can make at the time.
Doctor's do not really understand how every case unfolds, but there is a genetic tendency and there could be so many different triggers.
I am sure that Matt's surgery will help him. I am glad that Ella is seeing the same doctor. Praying for you all. (I do not recommend the fast with Ella, you need your energy, and you are suffering as much as you children are)
Doctor's do not really understand how every case unfolds, but there is a genetic tendency and there could be so many different triggers.
I am sure that Matt's surgery will help him. I am glad that Ella is seeing the same doctor. Praying for you all. (I do not recommend the fast with Ella, you need your energy, and you are suffering as much as you children are)
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Oh Nic, I am so sorry that you are going through such a very tough time! Just a little longer and things WILL start to improve! Just keeping reminding yourself that Matt and Ella are on the road to treatment and recovery.
As everyone has said, you can't blame yourself. My son was diagnosed this spring and I am sure that his trigger was all the ibuprofens (on doctor's advise) he took over the winter to relieve back pain from hockey. I think back and wonder why didn't I ever think that it was too many ibuprofens, why didn't I send him for more back massages, why didn't I just keep him from a few games or hockey altogether??? But, his GI has said that if it wasn't the ibuprofen, eventually, it would have been something else...
I just want to share something that may help the parents of young children here... when I was between 5 and 7 years old, I was diagnosed with juvenile osteoporosis. Its very rare (at the time, the children's hospital in Toronto had only had 9 cases in its history) and it took a long time before the diagnosis was made. During those years, I was in the hospital for weeks, if not months and, at that time, parents were only allowed to 'visit', no 24/7 attendance. Often on my own, I was poked and prodded by countless doctors from countless departments and some of the pokes and prods were painful. Prior to the accurate diagnosis, errors were made in treatment - 'it's all in her head, she wants attention' was one diagnosis - off to the psychiatrist I went (no help), another treatment worsened the condition (or allowed the condition to worsen) to the point that I could no longer walk at all, one nurse decided to take matters into her own hands and, after an excursion with some patients to the hospital's yard, declared that I could 'walk on my own if I really wanted' and left me outside alone. I suppose she forgot about me and it wasn't until my mom arrived hours later that I was found, terribly thirsty and sunburnt. I was eventually diagnosed and treated, altho it did take a few years for my body to completely rebuild the bone density and muscle lost over the years. BUT, with all that, my memories of my childhood are only HAPPY ones!!! I've never remembered the the painful pokes and prods as being any more 'traumatic' than when I fell and required stitches as a teen. I may not have the same memories of being 5-7 years as the typical person, however, I remember attending shows and events at the hospital that my friends at home couldn't attend, my memories include hospital playrooms filled with every toy imaginable and doctor's visits being no more than 'interruptions' to my time in the playroom. I remember feeling special because so many people always came to visit (and brought gifts! LOL). I remember numerous follow-up visits to the hospital as an outpatient but I remember that each time we went into the city for an apptmt, my parents would take me for an ice cream or just a walk downtown (exciting for a 7 year old!). Even after spending two years seeing doctors, not being able to walk, not being able to attend school very regularly, taking medications or treatments I didn't like, these memories did not replace HAPPY memories, they are just part of my childhood just like losing a childhood pet (certainly an unhappy memory but not overshadowing all the happy ones).
I hope this alleviates a little of your concern that your child will not have a 'good' childhood. I was fortunate that my condition eventually led to a full recovery, however, my childhood was filled with hospitals, doctors, needles and, as far as I'm concerned, it was still all good!
As everyone has said, you can't blame yourself. My son was diagnosed this spring and I am sure that his trigger was all the ibuprofens (on doctor's advise) he took over the winter to relieve back pain from hockey. I think back and wonder why didn't I ever think that it was too many ibuprofens, why didn't I send him for more back massages, why didn't I just keep him from a few games or hockey altogether??? But, his GI has said that if it wasn't the ibuprofen, eventually, it would have been something else...
I just want to share something that may help the parents of young children here... when I was between 5 and 7 years old, I was diagnosed with juvenile osteoporosis. Its very rare (at the time, the children's hospital in Toronto had only had 9 cases in its history) and it took a long time before the diagnosis was made. During those years, I was in the hospital for weeks, if not months and, at that time, parents were only allowed to 'visit', no 24/7 attendance. Often on my own, I was poked and prodded by countless doctors from countless departments and some of the pokes and prods were painful. Prior to the accurate diagnosis, errors were made in treatment - 'it's all in her head, she wants attention' was one diagnosis - off to the psychiatrist I went (no help), another treatment worsened the condition (or allowed the condition to worsen) to the point that I could no longer walk at all, one nurse decided to take matters into her own hands and, after an excursion with some patients to the hospital's yard, declared that I could 'walk on my own if I really wanted' and left me outside alone. I suppose she forgot about me and it wasn't until my mom arrived hours later that I was found, terribly thirsty and sunburnt. I was eventually diagnosed and treated, altho it did take a few years for my body to completely rebuild the bone density and muscle lost over the years. BUT, with all that, my memories of my childhood are only HAPPY ones!!! I've never remembered the the painful pokes and prods as being any more 'traumatic' than when I fell and required stitches as a teen. I may not have the same memories of being 5-7 years as the typical person, however, I remember attending shows and events at the hospital that my friends at home couldn't attend, my memories include hospital playrooms filled with every toy imaginable and doctor's visits being no more than 'interruptions' to my time in the playroom. I remember feeling special because so many people always came to visit (and brought gifts! LOL). I remember numerous follow-up visits to the hospital as an outpatient but I remember that each time we went into the city for an apptmt, my parents would take me for an ice cream or just a walk downtown (exciting for a 7 year old!). Even after spending two years seeing doctors, not being able to walk, not being able to attend school very regularly, taking medications or treatments I didn't like, these memories did not replace HAPPY memories, they are just part of my childhood just like losing a childhood pet (certainly an unhappy memory but not overshadowing all the happy ones).
I hope this alleviates a little of your concern that your child will not have a 'good' childhood. I was fortunate that my condition eventually led to a full recovery, however, my childhood was filled with hospitals, doctors, needles and, as far as I'm concerned, it was still all good!
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Hi Nic, Glad to see you made your way here!
I'm stuck on MDU right now, but will try and pop in on my way outta here!
Hang on in there hun- your doing a fab job.
And xx
I'm stuck on MDU right now, but will try and pop in on my way outta here!
Hang on in there hun- your doing a fab job.
And xx
DustyKat
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I'm so sorry to hear about Matt hun but hopefully this will be the turning point for him, as it was for my children, and you will have your happy little boy back! It is Friday here now and I will be thinking of you all as the day progresses and holding very special thoughts and wishes in my heart for a wonderful outcome.
And little Ella...I so hope all goes well for her too. What a very, very difficult time for you Nic and Dan. My heart goes out to you both, I know it's the last thing you are thinking of but your little 'uns are so very blessed to have such a wonderful, caring and compassionate Mum and Dad...:hug:
I know our circumstances are very different but I have spent many years now trying to find sensibility in all that has happened to my children. My husband has a first cousin with CD but that it is it, no other link. I looked to their upbringing and to outside factors. Neither had antibiotics until diagnosed, one had braces one didn't, one was mad about sport one wasn't, one had Asthma one didn't, one loved fruit one didn't...on and on it went until I couldn't find any more similarities or differences and still I had no answers, no common denominator apart from the most obvious, they are brother and sister, related.
In our case I have had to accept that it is genetic and nothing I or anyone else did or didn't do could have prevented it, it was that or lose my sanity. Trigger or no trigger they are predisposed to developing it. I have had time on my side though Nic and it did take me quite a while to reach the place I am now. It doesn't make it easier knowing it and I still have my black dog days but they do get fewer and farther apart. I guess I will have them for the rest of my life but that's okay, there's a good reason and why shouldn't I get thoroughly pissed off the world every now and then for the hand they been have dealt. :lol:
It is early days hun, don't be hard on yourself for the emotions you feel. They are raw, normal and natural. Just know we are here for you every step of the way and that we understand.
Lots of love, :wub:
Dusty. xxxxxxxx
And little Ella...I so hope all goes well for her too. What a very, very difficult time for you Nic and Dan. My heart goes out to you both, I know it's the last thing you are thinking of but your little 'uns are so very blessed to have such a wonderful, caring and compassionate Mum and Dad...:hug:
I know our circumstances are very different but I have spent many years now trying to find sensibility in all that has happened to my children. My husband has a first cousin with CD but that it is it, no other link. I looked to their upbringing and to outside factors. Neither had antibiotics until diagnosed, one had braces one didn't, one was mad about sport one wasn't, one had Asthma one didn't, one loved fruit one didn't...on and on it went until I couldn't find any more similarities or differences and still I had no answers, no common denominator apart from the most obvious, they are brother and sister, related.
In our case I have had to accept that it is genetic and nothing I or anyone else did or didn't do could have prevented it, it was that or lose my sanity. Trigger or no trigger they are predisposed to developing it. I have had time on my side though Nic and it did take me quite a while to reach the place I am now. It doesn't make it easier knowing it and I still have my black dog days but they do get fewer and farther apart. I guess I will have them for the rest of my life but that's okay, there's a good reason and why shouldn't I get thoroughly pissed off the world every now and then for the hand they been have dealt. :lol:
It is early days hun, don't be hard on yourself for the emotions you feel. They are raw, normal and natural. Just know we are here for you every step of the way and that we understand.
Lots of love, :wub:
Dusty. xxxxxxxx
I think we probably all have drove ourselves crazy trying to figure out why this had to happen to our kids but it doesnt help the situation because there are still no answers. my daughter is the only one in our family to have crohns & Ive beaten myself up trying to figure out what I did wrong, but now I realize that doing that wont fix anything. I know this is hard for you but you are doing a great job holding it together & matt is lucky to have you as his mom. we are all here for support so dont worry if you need to complain then go right ahead and let it out, I feel your pain and weve all been there. Best of luck, stay strong & positive.
Mattsmum.Yes,we have all been there,blaming ourselves and trying to figure it all out. Time will heal all wounds,physical and mental.After a while you just come to accept it.I would change place with my son in a second if I only could,as I know all the other parents out there would too.You just keep going,that's all. Good luck on Friday and we'll be thinking about you all.
Thank you all so much- it's good to know I'm not the only one who feels like this. I was starting to think that there was something wrong with me. Dan is so level headed and more composed than I. Just wish I had his strength.
Matt has started his prep for tomorrow. He's first on the list and is heading to surgery at around 8.30am. We're still unsure of what will be done, but have confidence in his surgeon that he will try as much as possible to avoid an Ileostomy. If needs be, and it means Matt gets his quality of life back, then we will deal with it. We have to for his sake!!
Ella's sore tummy still appears to be giving her a few issues. She's still not complaining of a sore throat or mouth, so thats good news. For the past hour she's been sat on Andrea's bed reading to her (thanks And x). It's given Dan and I a bit of a break to concentrate on Matt and his prep, while she has someone else's undivided attention and seems to be thriving on it..Ella that is, Andrea looks exhausted!!!
Can't wait to get this weekend and Monday over and done with. I'm sure it's going to be long, and I have a feeling I'll be checking in loads whilst waiting for Matt to come out of surgery. Isn't the waiting just the bloody pits! I'm sat here wishing mine and my childrens lives away- seems wrong somehow!
Thank you again for your support.
Nic, Dan, Matt and Ella xxx
Matt has started his prep for tomorrow. He's first on the list and is heading to surgery at around 8.30am. We're still unsure of what will be done, but have confidence in his surgeon that he will try as much as possible to avoid an Ileostomy. If needs be, and it means Matt gets his quality of life back, then we will deal with it. We have to for his sake!!
Ella's sore tummy still appears to be giving her a few issues. She's still not complaining of a sore throat or mouth, so thats good news. For the past hour she's been sat on Andrea's bed reading to her (thanks And x). It's given Dan and I a bit of a break to concentrate on Matt and his prep, while she has someone else's undivided attention and seems to be thriving on it..Ella that is, Andrea looks exhausted!!!
Can't wait to get this weekend and Monday over and done with. I'm sure it's going to be long, and I have a feeling I'll be checking in loads whilst waiting for Matt to come out of surgery. Isn't the waiting just the bloody pits! I'm sat here wishing mine and my childrens lives away- seems wrong somehow!
Thank you again for your support.
Nic, Dan, Matt and Ella xxx
Crohn's Mom
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Nic I wish you all nothing but the very best in his surgery !:Karl:
I know how hard the waiting and not knowing the outcome is all too well. My thoughts and heart will be with you tomorrow !
And how very sweet of And to hang out with Ella ! I bet they're both enjoying it so much, and what a nice distraction for them both! Send some big squishy hugs to Andrea from me (and yourself as well)
Hang in there and don't forget to breath!! We're here !
I will be watching in anticipation for your updates
much love and strength !
xoxooxox
~T~
I know how hard the waiting and not knowing the outcome is all too well. My thoughts and heart will be with you tomorrow !
And how very sweet of And to hang out with Ella ! I bet they're both enjoying it so much, and what a nice distraction for them both! Send some big squishy hugs to Andrea from me (and yourself as well)
Hang in there and don't forget to breath!! We're here !
I will be watching in anticipation for your updates
much love and strength !
xoxooxox
~T~
DustyKat
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Hey Nic,
Hoping so much that all goes well for your little 'uns over the next few days.
I have wished so many days away with my two that I have lost count! and yes! the waiting sucks big time!
Sending mega loads of (((HUGS))) and (((HEALING THOUGHTS))) to all...
:hug::ghug::hug::ghug::hug::ghug::hug::ghug::hug:
Much love, :wub:
Dusty. xxxxxxxx
Hoping so much that all goes well for your little 'uns over the next few days.
I have wished so many days away with my two that I have lost count! and yes! the waiting sucks big time!
Sending mega loads of (((HUGS))) and (((HEALING THOUGHTS))) to all...
:hug::ghug::hug::ghug::hug::ghug::hug::ghug::hug:
Much love, :wub:
Dusty. xxxxxxxx
DustyKat
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No it's not you hun, the waiting is so hard...:hug:
When my Matt had surgery it took about 4 hours and it seemed like it was forever, I could have sworn the clock had stopped! Waiting here with you mate with everything crossed.
Loads of love and hugs...:wub:
Dusty. xxxxxxxx
When my Matt had surgery it took about 4 hours and it seemed like it was forever, I could have sworn the clock had stopped! Waiting here with you mate with everything crossed.
Loads of love and hugs...:wub:
Dusty. xxxxxxxx
Crohn's Mom
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just stopping in and letting you know I am thinking of you and your lil Matt.
I know this is probably the hardest day of your life...my heart is with you!
I know I will come back here later and see all the best news ever !!
much love!! and gentle hugs!
~T~
I know this is probably the hardest day of your life...my heart is with you!
I know I will come back here later and see all the best news ever !!
much love!! and gentle hugs!
~T~
Hi all. Thanks so much for the thoughts.
Matts back on the ward... With an Ileostomy.
Sorry for my poor language, but this fucking stinks!!!
He spent a few hours just 2 beds away from Andrea, heart breaking for us to come back to the ward and leave her there!
I dont know how we cope- just know we have no choice!!
I hope this isnt Ella's future.
I feel broken...
Nic xxx
Matts back on the ward... With an Ileostomy.
Sorry for my poor language, but this fucking stinks!!!
He spent a few hours just 2 beds away from Andrea, heart breaking for us to come back to the ward and leave her there!
I dont know how we cope- just know we have no choice!!
I hope this isnt Ella's future.
I feel broken...
Nic xxx
DustyKat
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Oh my Nic, my heart goes out to you and Dan...:hug:
I felt when you hadn't posted sooner that this would be the outcome and yes, it does fucking stink. I hope and pray that despite what seems such an awful outcome now that you now find yourself with a little boy that will be able to enjoy life to fullest. One that will be able to go outside and play without a worry, eat like you haven't seen in quite a while no doubt and most of all you won't see the pain in his eyes. I know it is too early and too raw to think of these things, that you are only takings things hour by hour...:hug:
I feel your fear your Ella Nic, we are here beside you hun, every step of the way.
Sending all my love and healing thoughts to you all, :Karl:
Dusty. xxxxxxxx
I felt when you hadn't posted sooner that this would be the outcome and yes, it does fucking stink. I hope and pray that despite what seems such an awful outcome now that you now find yourself with a little boy that will be able to enjoy life to fullest. One that will be able to go outside and play without a worry, eat like you haven't seen in quite a while no doubt and most of all you won't see the pain in his eyes. I know it is too early and too raw to think of these things, that you are only takings things hour by hour...:hug:
I feel your fear your Ella Nic, we are here beside you hun, every step of the way.
Sending all my love and healing thoughts to you all, :Karl:
Dusty. xxxxxxxx
Dusty this whole f'ing disease stinks!
Matthews still asleep, Ellas at home with Dan, starting her prep tomorrow. We've gone from being an average 2.4 children family to this in 8 months.
I wish I could take this all away from them both. I dont know how we cope tomorrow, let alone Monday when Ellas scoped?
I cant see another baby go through this crap!!!
Nic xx
Matthews still asleep, Ellas at home with Dan, starting her prep tomorrow. We've gone from being an average 2.4 children family to this in 8 months.
I wish I could take this all away from them both. I dont know how we cope tomorrow, let alone Monday when Ellas scoped?
I cant see another baby go through this crap!!!
Nic xx
DustyKat
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I hear you hun, on all counts.
You will cope Nic, they are your babies and you would lay down your life for them. I know the next few days are insurmountable to you now but you will make it, you don't know how you will but your unrelenting love, your need to protect them and the place they forever have in your heart will see you through, it truly will.
I know you can't be in two places at once but your love, thoughts, prayers and wishes can be. You carry them in your heart and soul Nic and physical separation can't change that.
I'm right beside you Nic, as we all are, holding your hand and holding your heart.
Dusty. xxxxxxxx
You will cope Nic, they are your babies and you would lay down your life for them. I know the next few days are insurmountable to you now but you will make it, you don't know how you will but your unrelenting love, your need to protect them and the place they forever have in your heart will see you through, it truly will.
I know you can't be in two places at once but your love, thoughts, prayers and wishes can be. You carry them in your heart and soul Nic and physical separation can't change that.
I'm right beside you Nic, as we all are, holding your hand and holding your heart.
Dusty. xxxxxxxx
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Nic, I'm heartbroken hearing that your family is going through such tough, tough times. I know it seems surreal and you don't know how you will cope and accept but, you will! You will do it for Matt and Ella; you and Dan will be there for them and we are all here for you. Know that you are all in my thoughts and prayers.
What a long night!! To say I'm tired would be the biggest understatement.
Matt had what they would call a 'comfortable' night. I saw NO comfort in it at all. He would wake and pull at any/every tube attached to him. He hates them. Dont think he's noticed the Ileo as much as the drain and catheter. He looks so sad and sorry for himself, and I cant for one bloody second say I blame him.
My parents arrive this morning to lighten our load. Ella's prep starts at 8am tomorrow. Dan will be there for the 1st dose and then I will head home tomorrow afternoon for the 2nd and Dan will have to be here for Matt. Dan says she's asking after Matty, but I really dont want her in here seeing him like this, this weekend. We'll keep her away.
Right now I feel so damn angry and p'd off at the world. I can hear Andrea saying 'I must get a bloody grip' and I'm thinking the same. My babies need me to be strong. It's the very least I can do.
I'm sorry for becoming a miserable cow. I'm just finding it hard to see light at the end of this tunnel after 6 weeks here...and counting!
Nic xx
Matt had what they would call a 'comfortable' night. I saw NO comfort in it at all. He would wake and pull at any/every tube attached to him. He hates them. Dont think he's noticed the Ileo as much as the drain and catheter. He looks so sad and sorry for himself, and I cant for one bloody second say I blame him.
My parents arrive this morning to lighten our load. Ella's prep starts at 8am tomorrow. Dan will be there for the 1st dose and then I will head home tomorrow afternoon for the 2nd and Dan will have to be here for Matt. Dan says she's asking after Matty, but I really dont want her in here seeing him like this, this weekend. We'll keep her away.
Right now I feel so damn angry and p'd off at the world. I can hear Andrea saying 'I must get a bloody grip' and I'm thinking the same. My babies need me to be strong. It's the very least I can do.
I'm sorry for becoming a miserable cow. I'm just finding it hard to see light at the end of this tunnel after 6 weeks here...and counting!
Nic xx
DustyKat
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You will be strong when you need to be Nic...:hug:
I'm glad to read that your Mum and Dad are coming to help, it is such an awful time for you all.
I think you are making the right decision with Ella hun. Sarah had already been through the same procedure Matt had in April but I still think in many ways it upset and scared her to see him like that and she is 19 and no wus!
:hang: Nic. You are doing an amazing job!
Thinking of you, always, :Karl:
Dusty. xxxxxxxx
I'm glad to read that your Mum and Dad are coming to help, it is such an awful time for you all.
I think you are making the right decision with Ella hun. Sarah had already been through the same procedure Matt had in April but I still think in many ways it upset and scared her to see him like that and she is 19 and no wus!
:hang: Nic. You are doing an amazing job!
Thinking of you, always, :Karl:
Dusty. xxxxxxxx
Nic, I recently spoke with Tannersmom(Marsha) about her son Tanner. He's a few years older than Matt but also recently got a stoma. He was in a bad way last fall but Marsha was all smiles with how well he's doing now. He'll be attending public school this fall. I know it's going to take some time but you and Matt will get this down to routine and he's going to feel so much better. It's easy for me to say, we haven't dealt with anything of this magnitude. You're an amazing mother Nic! With your help, Matt and Ella can only thrive!
Why do I feel we are no further forward today than we were Friday?
Matts really not well at all. Running a temp and has really high output. Just hoping it's not down to infection.
Ella's had her 1st dose of prep today, and Dan said it's cost a bloody fortune in bribes to get it down her! The last one was a trip to Euro Disney when they're both well- Dads obviously softer than mum!!
I have a suspicion that tomorrow Ella will be diagnosed with this horrid disease too. I'm not wishing it upon her- but I just cant allow myself to think good right now. Its all too raw.
Thanks for letting me rant away here.
Love to all,
Nic xx
Matts really not well at all. Running a temp and has really high output. Just hoping it's not down to infection.
Ella's had her 1st dose of prep today, and Dan said it's cost a bloody fortune in bribes to get it down her! The last one was a trip to Euro Disney when they're both well- Dads obviously softer than mum!!
I have a suspicion that tomorrow Ella will be diagnosed with this horrid disease too. I'm not wishing it upon her- but I just cant allow myself to think good right now. Its all too raw.
Thanks for letting me rant away here.
Love to all,
Nic xx
DustyKat
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Oh Nic...(((HUGS :hug))
I so hope things settle for Matt and soon! Poor little love.
I know those feelings of fear and dread all too well hun. I am thinking of you Nic and wishing nothing but the best for your babies.
Sending loads of luck to Ella for her scope tomorrow. She will be in my thoughts hun.
All my love, :ghug:
Dusty. xxxxxxxx
))I so hope things settle for Matt and soon! Poor little love.
I know those feelings of fear and dread all too well hun. I am thinking of you Nic and wishing nothing but the best for your babies.
Sending loads of luck to Ella for her scope tomorrow. She will be in my thoughts hun.
All my love, :ghug:
Dusty. xxxxxxxx
Crohn's Mom
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Nic I am so sorry to hear all of this...I have wanted to get back to you sooner, but I was out of commission for a day or so.
Honey, I know it seems like the end of the world right now and things won't get better... but they will! I remember what it was like when Gab came out of surgery with an ileostomy. No, she's not 3 years old and can now take care of it herself, but I believe the emotions and the grieving at the loss of our babies innocence and childhood is the same none the less.
It is frightening and scary and you probably feel like there's no way you can handle this; and then add Ella's illness on top of it and you're going to explode. Do you have someone you can call and just scream to ?? I didn't think I did, and then directly after her surgery, I called a friend whom I hadn't spoken to in years. She has CD and I knew somehow she would just understand the emotions I was feeling. I screamed (literally), cried and cried, said how f'ing unfair this all is.. for Gab as well as me! I felt so selfish while it was all coming out of my mouth...but you know what...it helped! It helped more than I ever could have dreamed it would. And she listened, and listened, and listened...to me...for probably an hour straight. I was able to pick my pathetic self up after that phone call and take a deep breath and dive in head first to now take care of my little girl. It was pretty rough the first month, I won't lie..but we got through it through much trial and experimentation.
Yes, it will be a bit harder for you with him being only 3. Or maybe it won't. He doesn't have the "body image" issues to go along with all of this right now. He, once he is feeling better...and he WILL FEEL BETTER, will probably think it's really neat, and so will Ella. These kids are amazingly resilient, you will see, I promise. It's usually us, the mommies, that carry the burden of worry long after they are off living their lives, unaffected it seems.
I so hope that Ella doesn't have this nightmare of a disease either, but if she does, you can handle it. Just think of it as getting it all out of the way at once?? Two birds with one stone right. Then when they are both running and playing and laughing, you can have some relief.
I am glad your parents are coming to help. You really do need all the support and love around you that is possible right now. Don't fight it and try to play super-mom..it won't work. Accept all and any help that is offered up to you while the getting is good. Take it from a pro who had none and no one!
If there is anything I can do please let me know. PM me anytime. I can try my best to help you with the ileo. It's a bit different trying to change it on another person, then it is on yourself, and I have learned a few tricks along the way trying and learning not to mess it up (which I did that a few times too). We made it through, and I know you will too!!
much love and hugs,
~T~
:ghug::ghug::ghug:
Honey, I know it seems like the end of the world right now and things won't get better... but they will! I remember what it was like when Gab came out of surgery with an ileostomy. No, she's not 3 years old and can now take care of it herself, but I believe the emotions and the grieving at the loss of our babies innocence and childhood is the same none the less.
It is frightening and scary and you probably feel like there's no way you can handle this; and then add Ella's illness on top of it and you're going to explode. Do you have someone you can call and just scream to ?? I didn't think I did, and then directly after her surgery, I called a friend whom I hadn't spoken to in years. She has CD and I knew somehow she would just understand the emotions I was feeling. I screamed (literally), cried and cried, said how f'ing unfair this all is.. for Gab as well as me! I felt so selfish while it was all coming out of my mouth...but you know what...it helped! It helped more than I ever could have dreamed it would. And she listened, and listened, and listened...to me...for probably an hour straight. I was able to pick my pathetic self up after that phone call and take a deep breath and dive in head first to now take care of my little girl. It was pretty rough the first month, I won't lie..but we got through it through much trial and experimentation.
Yes, it will be a bit harder for you with him being only 3. Or maybe it won't. He doesn't have the "body image" issues to go along with all of this right now. He, once he is feeling better...and he WILL FEEL BETTER, will probably think it's really neat, and so will Ella. These kids are amazingly resilient, you will see, I promise. It's usually us, the mommies, that carry the burden of worry long after they are off living their lives, unaffected it seems.
I so hope that Ella doesn't have this nightmare of a disease either, but if she does, you can handle it. Just think of it as getting it all out of the way at once?? Two birds with one stone right. Then when they are both running and playing and laughing, you can have some relief.
I am glad your parents are coming to help. You really do need all the support and love around you that is possible right now. Don't fight it and try to play super-mom..it won't work. Accept all and any help that is offered up to you while the getting is good. Take it from a pro who had none and no one!
If there is anything I can do please let me know. PM me anytime. I can try my best to help you with the ileo. It's a bit different trying to change it on another person, then it is on yourself, and I have learned a few tricks along the way trying and learning not to mess it up (which I did that a few times too). We made it through, and I know you will too!!
much love and hugs,
~T~
:ghug::ghug::ghug:
Thanks both so much.
I'm sure this would be so much easier if I didn't feel so bloody tired. Im in my own bed tonight, but doubt it wont be a restful night, with Ella preping and my mind in a spin for tomorrow.
It's Matts 3rd birthday this week too. I had been hoping we would have been home having a nice family day...we'll make it up to them at Disney, but its not the same!
He's still hating all the drains etc. It's easier to keep him lightly sedated right now to avoid him pulling on them. I hate it...I hate this disease more than anything. Wouldn't wish it on my worse enemy!
Nic x
I'm sure this would be so much easier if I didn't feel so bloody tired. Im in my own bed tonight, but doubt it wont be a restful night, with Ella preping and my mind in a spin for tomorrow.
It's Matts 3rd birthday this week too. I had been hoping we would have been home having a nice family day...we'll make it up to them at Disney, but its not the same!
He's still hating all the drains etc. It's easier to keep him lightly sedated right now to avoid him pulling on them. I hate it...I hate this disease more than anything. Wouldn't wish it on my worse enemy!
Nic x
Nic! We're thinking about you here,too. You are at the bottom right now ,so things can only get better.Kids are so tough and maybe it's good that Matt is young and he won't remember all this.I know you just want him to feel good if only for a day. That day will come, and then another day and another day.And you have a right to feel angry about all this,don't feel bad about that.Good luck tomorrow.Cecilia
Nic, I'm praying hard for Matt and Ella...and you and Dan. It's hard to be strong when you are so tired and scared out of your wits. The doctors are going to get to a point where their treatment is helping Matt. Try to keep that in your heart. Everyone is so individual and what works for one kid doesn't for the next kid. They will figure it out.
I came in late of the triggers blame thing...I think every parent tries to think back on what caused their baby to get this. My son had bronchitis (spelling?) our local small town doc (not our pediatrician- cause I didn't have time to drive in town that day) prescribed him an antibiotic. It was told to me later by our pediatrician that it was a harsh one. That antibiotic tasted horrible...he was only 5 and would cry and cry..."NOOOO I don't want it". We'd make him... even hold him still and squirt it in his mouth. He had diarrhea for 9 mos before we finally had him scoped. I have nightmares about that. We thought we were helping him 'get well'. I never dreamed or had even heard of crohns.
Hang in there and Keep venting here...it helps to get it out amoungst parents on this forum that have experienced all different degrees of crohn's hell...it helps keep me sane! I wish I could meet all of you, I frequently refer to you all as my friends. No one...not even extended family or GI docs...can really know what our hearts and brains feel...only you guys. Love to you all
I came in late of the triggers blame thing...I think every parent tries to think back on what caused their baby to get this. My son had bronchitis (spelling?) our local small town doc (not our pediatrician- cause I didn't have time to drive in town that day) prescribed him an antibiotic. It was told to me later by our pediatrician that it was a harsh one. That antibiotic tasted horrible...he was only 5 and would cry and cry..."NOOOO I don't want it". We'd make him... even hold him still and squirt it in his mouth. He had diarrhea for 9 mos before we finally had him scoped. I have nightmares about that. We thought we were helping him 'get well'. I never dreamed or had even heard of crohns.
Hang in there and Keep venting here...it helps to get it out amoungst parents on this forum that have experienced all different degrees of crohn's hell...it helps keep me sane! I wish I could meet all of you, I frequently refer to you all as my friends. No one...not even extended family or GI docs...can really know what our hearts and brains feel...only you guys. Love to you all
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Well Dan and I have changed roles, he's on the ward with Matt and I'm at home with Ella and my parents. Was so nice to walk in this evening to Ella shouting 'mummy', big smiles and bigger hug. Her prep seems to be going well. Dan managed to get the 2nd one down her before I came home, so right now he's the baddie and mummys come home to save the day!
Good also to have my parents here. Mum had cooked a roast and then not long after run me a bath. It was good to just have that half hour time out, knowing that both kids were being looked after and I could at least try and zone out. Doesn't take much for the mind to come back to reality with a little voice shouting 'mummy', but it felt so good for as long as it lasted!
Now just to get tomorrow over and done...
Thanks all for your continued support
Nic xx
Good also to have my parents here. Mum had cooked a roast and then not long after run me a bath. It was good to just have that half hour time out, knowing that both kids were being looked after and I could at least try and zone out. Doesn't take much for the mind to come back to reality with a little voice shouting 'mummy', but it felt so good for as long as it lasted!
Now just to get tomorrow over and done...
Thanks all for your continued support
Nic xx
Crohn's Mom
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Right here with you Nic xoxox
Best of luck for Ella tomorrow!!
Try and get a little rest now that your parents are there...let them help you, that's why they came.
big big hugs and lots of luv to you!
~T~
Best of luck for Ella tomorrow!!
Try and get a little rest now that your parents are there...let them help you, that's why they came.
big big hugs and lots of luv to you!
~T~
Crohn's Mom
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Hoping everything went well and you're getting some rest.
hugs and love,
~T~
hugs and love,
~T~
Hi all. Well Im sorry that I didn't post yesterday, just didn't have the heart.
Ellas scopes went well, and she's recovered really quickly. Our Gastro has confirmed he believes Ella too has Crohns. Hers unlike Matts is in her throat and upper colon going into her small intestine. She also has some areas of erosion in her tummy. We're now just waiting on her biopsies to confirm, but she's began treatment regardless. I think based on Matts histrory, they're not prepared to wait any longer.
Matt's brighter this morning. Hoping that his drains etc will be removed later today. Just one BIG issue with him right now, and its that he keeps trying to pull his bag off. He hates anything being attached to him. Well this will be fun, trying to get him to leave it alone. Our stoma nurse will be in later to give Dan and I a lesson in learning to care for it, change him etc. Reality hitting home hard now.
Yesterday was a horrid day. If I could have rung our GP and told him I'm not f'ing neurotic and was just concerned (with good reasson it seems) I would have. This just all seems so bloody unfair. I thought I was mentaly prepared for this diagnosis, but it still felt like I'd been kicked in the guts...even Dan sat and wept.
Ella's currently at home being spoilt rotten by my parents. She 'loves' having to take her new medicine, but I'm sure that novelty will soon wear off. The bribes continue...and soon we will be bankrupt lol
Wish I had something more positive to post. Will be back later when we've had our lessons in stoma care, and to let you know how Ellas 1st meeting with Matt since his surgery went. He's always asking after her, I think he misses her greatly. Will be good to see them back together.
Thanks for all your kind words and good wishes.
Love to all,
Nic and gang xx
Ellas scopes went well, and she's recovered really quickly. Our Gastro has confirmed he believes Ella too has Crohns. Hers unlike Matts is in her throat and upper colon going into her small intestine. She also has some areas of erosion in her tummy. We're now just waiting on her biopsies to confirm, but she's began treatment regardless. I think based on Matts histrory, they're not prepared to wait any longer.
Matt's brighter this morning. Hoping that his drains etc will be removed later today. Just one BIG issue with him right now, and its that he keeps trying to pull his bag off. He hates anything being attached to him. Well this will be fun, trying to get him to leave it alone. Our stoma nurse will be in later to give Dan and I a lesson in learning to care for it, change him etc. Reality hitting home hard now.
Yesterday was a horrid day. If I could have rung our GP and told him I'm not f'ing neurotic and was just concerned (with good reasson it seems) I would have. This just all seems so bloody unfair. I thought I was mentaly prepared for this diagnosis, but it still felt like I'd been kicked in the guts...even Dan sat and wept.
Ella's currently at home being spoilt rotten by my parents. She 'loves' having to take her new medicine, but I'm sure that novelty will soon wear off. The bribes continue...and soon we will be bankrupt lol
Wish I had something more positive to post. Will be back later when we've had our lessons in stoma care, and to let you know how Ellas 1st meeting with Matt since his surgery went. He's always asking after her, I think he misses her greatly. Will be good to see them back together.
Thanks for all your kind words and good wishes.
Love to all,
Nic and gang xx
DustyKat
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Hey Nic...(((HUGS...:hug))
I am so, so sorry to hear about Ella hun. What a difficult and distressing time for you all and it is bloody unfair mate.
I know the pain and injustice is overwhelming right now and will be that way for a while yet but ever so slowly it will recede and the joy and laughter will return. It's an insidious sort of thing Nic, one of those things that creeps up on you and then you will look back and say...was it really that long ago all this happened. Right now it will feel like time is standing still, each minute seems like an hour and each hour a day, you wonder how the hell you are ever going to get through this, will there ever be a time without doctors, without hospitals, without fear, without heartache, without helplessness, without despair and without the black dog. The answer to that is yes Nic, there will be a time without all those things, they will never fully go away, there will always be good and bad days and the black dog will occasionally coming calling but the times in between are so very precious. Your priorities will change and you will savour your time with your children, it will be more intense, more fulfilling and more loving.
It's fab to hear Ella and Matt are doing well and hopefully the stoma nurse will have some good tips to keep Matt from trying to pull off the bag! :eek2:
Thinking of you all and sending loads of love and healing thoughts your way...:wub:
Dusty. xxxxxxxx
))I am so, so sorry to hear about Ella hun. What a difficult and distressing time for you all and it is bloody unfair mate.
I know the pain and injustice is overwhelming right now and will be that way for a while yet but ever so slowly it will recede and the joy and laughter will return. It's an insidious sort of thing Nic, one of those things that creeps up on you and then you will look back and say...was it really that long ago all this happened. Right now it will feel like time is standing still, each minute seems like an hour and each hour a day, you wonder how the hell you are ever going to get through this, will there ever be a time without doctors, without hospitals, without fear, without heartache, without helplessness, without despair and without the black dog. The answer to that is yes Nic, there will be a time without all those things, they will never fully go away, there will always be good and bad days and the black dog will occasionally coming calling but the times in between are so very precious. Your priorities will change and you will savour your time with your children, it will be more intense, more fulfilling and more loving.
It's fab to hear Ella and Matt are doing well and hopefully the stoma nurse will have some good tips to keep Matt from trying to pull off the bag! :eek2:
Thinking of you all and sending loads of love and healing thoughts your way...:wub:
Dusty. xxxxxxxx
Amen Dusty!!
Sorry Nic! I hope the pred rights little Ella's ship and then the other meds keep her going strong. I won't pretend to know anything about stomas, especially with a 3 yr old, that's gotta be tough!! I bet Matt'll come round to it quickly and be a stoma pro in no time! I wish he didn't have to be This will all be so much better when you guys are all HOME together again!!!
Sorry Nic! I hope the pred rights little Ella's ship and then the other meds keep her going strong. I won't pretend to know anything about stomas, especially with a 3 yr old, that's gotta be tough!! I bet Matt'll come round to it quickly and be a stoma pro in no time! I wish he didn't have to be
This will all be so much better when you guys are all HOME together again!!!Hi Nic. I am not sure how long ago Matt was diagnosed, or how long he had his symptoms before treatment with prednisone, etc ... but I am really hoping that the medication will set Ella into remission and perhaps in a way Matt was able to help his sister get prompt treatment. Hope those tubes come off of Matt today. ... and really think/hope this week has been your rock bottom and things will only improve from here on in.
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Hi Nic, just read your story.. Sorry you are all going through this and know how hard it can be. Even when you think you are mentally ready for the news, it still hits you like a boulder falling from a cliff. I hope the pred helps Ella and I pray Matt is able to cope with the stoma. You all are in my thoughts and prayers!!!
the fact that you are able to post after all you and your family have been through is amazing to me. you give people like me the strength to keep going and never give up. you've been let down so much that theres only one way to go from here and thats up hope that the little ones are doing better & praying for you all.
hope that the little ones are doing better & praying for you all.
AZMOM
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Nic........ I'm speechless. Love your heart......and your babies' hearts. Feel free to unload on the GP, it's deserved and hopefully he/she would learn something. I did that to a pediatric orthopedist (who shall remain nameless) who thought Claire's 3 year old limp & refusal to use a hand was to get attention and wanted to know *how are things at home*. Two weeks later, she was diagnosed with JRA and was really really ill. The Pediatric Rheumatologist who diagnosed her was horrified at the 6 month delay. If nothing else, put your thoughts on paper and ponder sending them at some point.........
I remember the feelings of sadness mixed with almost relief to know that you aren't crazy. Well you are not and you're a great Mom. Let us know what we can do to support you all.
And by the way, I think the good cry was a healthy healthy healthy thing to do. I mean that!
Big Hug and lots of prayers for your whole family,
J.
I remember the feelings of sadness mixed with almost relief to know that you aren't crazy. Well you are not and you're a great Mom. Let us know what we can do to support you all.
And by the way, I think the good cry was a healthy healthy healthy thing to do. I mean that!
Big Hug and lots of prayers for your whole family,
J.
Thanks all for your continued support.
It's Matts 3rd birthday today, and as hard as we tried to make this morning a happy one, neither of them are up to celebrating!
Matts running a temp, and has sore skin under his flange. We tried hard yesterday with the stoma nurse, but boy was it trying! He hates it, keeps trying to peel it away and is almost constantly pulling at his bag. On a brighter note, NO more tubes, he's free to go wondering and playing again, but really has barely moved from bed or my lap since last night.
Ellas seems to be doing ok. She's having some 'moments' of temper tantrums and being 'hyper', and I'm not sure if its pred related? Was not like this before Monday!
Hoping that we may be allowed home later this week. Its been 7 weeks now, and we desperately need to get out of here! lol
Hope everyone out in the real world is keeping well
Nic and gang xx
It's Matts 3rd birthday today, and as hard as we tried to make this morning a happy one, neither of them are up to celebrating!
Matts running a temp, and has sore skin under his flange. We tried hard yesterday with the stoma nurse, but boy was it trying! He hates it, keeps trying to peel it away and is almost constantly pulling at his bag. On a brighter note, NO more tubes, he's free to go wondering and playing again, but really has barely moved from bed or my lap since last night.
Ellas seems to be doing ok. She's having some 'moments' of temper tantrums and being 'hyper', and I'm not sure if its pred related? Was not like this before Monday!
Hoping that we may be allowed home later this week. Its been 7 weeks now, and we desperately need to get out of here! lol
Hope everyone out in the real world is keeping well
Nic and gang xx
Happy birthday matt pleased all the tubes are out nic the pred is making Jordan very stroppey and moody at times and hyper like Jordan got out of bed at 2am in the morning and asked us to go to mcdonalds for him to get a dairy milk mc flurry and when we said no he sat on the landing window ledge for about 20 min in a mood and he is 15 hang in there Hun and I hope little matt gets out of hospital soon so yous can get back to a normal family life all together in your own home xx
Crohn's Mom
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:bdayparty::bdayparty::bdayparty:
Happy Birthday Matt !!
Awe Nic, I'm just catching up and I'm so sorry to hear about Ella as well. This must be the hardest time in your life. Bless your hearts.
Dusty is right, and yes it's most definitely the prednisone making her act out! That is one of the many reasons why we love to hate that amazing little drug!
I had an idea when I was thinking about Matt the other day, and now it may be nice for Ella as well. It's simple, but could mean a lot to them; and it's probably cheaper than most of your bribes!
How about getting two relatively small stuffed animal bears (or whatever kind they may prefer), and having the bears go through everything with the two of them. Mostly my idea began for Matt, and I thought it may be neat to have an "ostomy bear", that also has an incision like his. Then maybe you could put a pediatric size two piece flange on his bear and Matt can help change mr. bears bag and bandages. Ella's could also have one if she insisted, or you wanted, and then she could also participate ( and save your hair from them fighting over who's turn it is! LOL). YOu could put a bandage on the belly for the incision, or get creative however you like with it. Then they could always bring them with them to the doctors and hospitals and their bears can go through everything they go through with them. Sometimes the littlest things can make a big difference in the mind of a child, so this was just a thought. I hope how I have described what I am thinking makes sense, as I don't have any pictures to show what I mean LOL.
Hang in there hun and hopefully you all get to go home soon!
much love and hugs !
~T~
Happy Birthday Matt !!
Awe Nic, I'm just catching up and I'm so sorry to hear about Ella as well. This must be the hardest time in your life. Bless your hearts.
Dusty is right, and yes it's most definitely the prednisone making her act out! That is one of the many reasons why we love to hate that amazing little drug!
I had an idea when I was thinking about Matt the other day, and now it may be nice for Ella as well. It's simple, but could mean a lot to them; and it's probably cheaper than most of your bribes!
How about getting two relatively small stuffed animal bears (or whatever kind they may prefer), and having the bears go through everything with the two of them. Mostly my idea began for Matt, and I thought it may be neat to have an "ostomy bear", that also has an incision like his. Then maybe you could put a pediatric size two piece flange on his bear and Matt can help change mr. bears bag and bandages. Ella's could also have one if she insisted, or you wanted, and then she could also participate ( and save your hair from them fighting over who's turn it is! LOL). YOu could put a bandage on the belly for the incision, or get creative however you like with it. Then they could always bring them with them to the doctors and hospitals and their bears can go through everything they go through with them. Sometimes the littlest things can make a big difference in the mind of a child, so this was just a thought. I hope how I have described what I am thinking makes sense, as I don't have any pictures to show what I mean LOL.
Hang in there hun and hopefully you all get to go home soon!
much love and hugs !
~T~
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Oh Nic, I'm so sorry that you all have so much to deal with right now. I can only imagine how overwhelming it must feel right now! But, Matt and Ella are on the road to recovery, and as Dusty said, better days are ahead for all of you.
You'll be home soon and, that in itself, will be a huge improvement! I'm sure Matt and Ella will begin to recover so much quicker once they're home amoungst their toys, friends and family.
I'm thinking of you and wishing happier days are just around the corner for you!
I can only imagine how overwhelming it must feel right now! But, Matt and Ella are on the road to recovery, and as Dusty said, better days are ahead for all of you.You'll be home soon and, that in itself, will be a huge improvement! I'm sure Matt and Ella will begin to recover so much quicker once they're home amoungst their toys, friends and family.
I'm thinking of you and wishing happier days are just around the corner for you!
AZMOM
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Hey Nic - T's idea is AWESOME if you are up for it. "Medical play" was a big thing at Phoenix Children's Hospital. They didn't force them but provided all the materials and a doll to act things out. Maybe Matt can pull on the bears bag and leave his alone. :ylol:
thinking of you all today......
J.
thinking of you all today......
J.
:dance: Happy news!!
We have just been advised, that if Matts condition remains like this we can go home tomorrow!!
To say I'm elated would be an understatement.:ybiggrin:
Thank you all so much for your support since I was directed here. It really has helped knowing that others out there have been here, and reading some of these posts, that thing's can indeed get better.
Nic xx
We have just been advised, that if Matts condition remains like this we can go home tomorrow!!
To say I'm elated would be an understatement.:ybiggrin:
Thank you all so much for your support since I was directed here. It really has helped knowing that others out there have been here, and reading some of these posts, that thing's can indeed get better.
Nic xx
DustyKat
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Oh Nic this is just the most fab news! I am so happy for you all! anda:anda:anda:anda:anda:anda:
Good luck hun, I hope all goes according plan and you are dashing out the doors tomorrow! There really is no place like home...:Flower:
Sending loads of gentle squishy hugs your way, :ghug:
Dusty. xxxxxxxx
anda:anda:anda:anda:anda:anda:Good luck hun, I hope all goes according plan and you are dashing out the doors tomorrow! There really is no place like home...:Flower:
Sending loads of gentle squishy hugs your way, :ghug:
Dusty. xxxxxxxx
:yoshijumpjoy: We are Home!!!
Its been a long 8 weeks, but we're throught it. Tonight all 4 of us will sleep under the same roof - small thing but never realised how much it meant until now.
Ella continues to be a little madam, tantrums galore and forever on the go. Crohns wise, she seems stable for now. Not sure if I should love or hate the bloody Pred?
Matt seems more himself since coming home, he too is running around like a fool. His Ileo is still a bug bear for him, still pulling at the bag, but he does seem to be doing this less frequent.
I love just watching them be kids again, but their energy is zapping Dan and I. Wish we had half of it, maybe we should all be on Pred? Lol
Hope you're all having a good weekend
Nic xx
Its been a long 8 weeks, but we're throught it. Tonight all 4 of us will sleep under the same roof - small thing but never realised how much it meant until now.
Ella continues to be a little madam, tantrums galore and forever on the go. Crohns wise, she seems stable for now. Not sure if I should love or hate the bloody Pred?
Matt seems more himself since coming home, he too is running around like a fool. His Ileo is still a bug bear for him, still pulling at the bag, but he does seem to be doing this less frequent.
I love just watching them be kids again, but their energy is zapping Dan and I. Wish we had half of it, maybe we should all be on Pred? Lol
Hope you're all having a good weekend
Nic xx
Crohn's Mom
Moderator
- Joined
- Mar 9, 2011
- Messages
- 2,996
Congrats on being home!
That in itself will make all the difference in the world!
:ghug::ghug:
~T~
That in itself will make all the difference in the world!
:ghug::ghug:
~T~
Nic,
So glad you are all home. That helps things feel normal and safe for the kids.
I'm sure you mentioned this somewhere and I missed it. But did they not ever try Humira after the Remicade(infliximab) didn't work?
So glad you are all home. That helps things feel normal and safe for the kids.
I'm sure you mentioned this somewhere and I missed it. But did they not ever try Humira after the Remicade(infliximab) didn't work?
Well we've been home a few days now, and its been good to have us all under the same roof at bed time and in the morning.
Now you will think I'm going crazy (No doubt I am), but I'm missing the security of the hospital. We are having BIG problems with Matt and him constantly pulling at his bag, trying to change it, empty it, keep his skin healthy...its endless. I know this is all so new, and appreciate its a big change for him too, but its getting us down. We were just about getting it together with potty training before he was admitted, now for some strange reason he refuses to use the potty or toilet. He seems to be back to wetting himself....
Ella is the child of the devil. She sure has 666 somewhere on her head. I cant wait to get her off the bloody pred. No sleep, playing at 1, 3, 5am. Hungry at 2am.
It never ends...
I know I should be greatful that we are home, and believe me I am so much. I just never imagined this would be how it would turn out. If one of them sneezes or coughs we worry about the 6MP, if Ella goes to the bathroom a few times in the hour, we worry that she's going downhill, if Matt sleeps longer than usual we worry...We bloody worry about EVERYTHING!
I sat and spoke with And for over an hour last night trying to make sense of this. And I'm sorry to have bothered you- but I just didnt know where to turn. I sobbed, just didn't know how to stop the tears. This morning, I've woken up angry at the world, and thinking why my babies? I'm sat here, while they both run rings round my parents. Boy, they look as exhausted as I feel. Thank god they're here until the weekend.
Please someone tell me this does get better!!
Nic xx
Now you will think I'm going crazy (No doubt I am), but I'm missing the security of the hospital. We are having BIG problems with Matt and him constantly pulling at his bag, trying to change it, empty it, keep his skin healthy...its endless. I know this is all so new, and appreciate its a big change for him too, but its getting us down. We were just about getting it together with potty training before he was admitted, now for some strange reason he refuses to use the potty or toilet. He seems to be back to wetting himself....
Ella is the child of the devil. She sure has 666 somewhere on her head. I cant wait to get her off the bloody pred. No sleep, playing at 1, 3, 5am. Hungry at 2am.
It never ends...
I know I should be greatful that we are home, and believe me I am so much. I just never imagined this would be how it would turn out. If one of them sneezes or coughs we worry about the 6MP, if Ella goes to the bathroom a few times in the hour, we worry that she's going downhill, if Matt sleeps longer than usual we worry...We bloody worry about EVERYTHING!
I sat and spoke with And for over an hour last night trying to make sense of this. And I'm sorry to have bothered you- but I just didnt know where to turn. I sobbed, just didn't know how to stop the tears. This morning, I've woken up angry at the world, and thinking why my babies? I'm sat here, while they both run rings round my parents. Boy, they look as exhausted as I feel. Thank god they're here until the weekend.
Please someone tell me this does get better!!
Nic xx
Hey Nic, I won't pretend to know what you're going through. I do remember EJ was a hellion on pred but he was 11 at the time so probably a little more reasonable than a 4 yr old.
Does it not hurt Matt's stoma to pull on the bag. I don't know anything about it, but it seems it would and that would teach him to leave it alone. I wish I had some magic advice for you. I suspect you're dealing with more in short order than most of us have had to over the long haul. I hope things start improving soon!!
Does it not hurt Matt's stoma to pull on the bag. I don't know anything about it, but it seems it would and that would teach him to leave it alone. I wish I had some magic advice for you. I suspect you're dealing with more in short order than most of us have had to over the long haul. I hope things start improving soon!!
Look at this that Vonfunk had made for his...right on cue!!
http://www.crohnsforum.com/showthread.php?t=20906
http://www.crohnsforum.com/showthread.php?t=20906
DustyKat
Super Moderator
- Joined
- May 8, 2010
- Messages
- 23,976
Oh Nic........(((((((((((((HUGS)))))))))))))
You aren't crazy for missing the hospital hun, not by a long shot. All this is so new, so unexpected and so scary. Is it any wonder that you wish to have the security of knowledge, expertise and reassurance around you, there would be something wrong if you didn't!
It is a time of adjustment for all of you. You and Dan dealing with your children's diagnoses and learning to deal with Matt's stoma with confidence and ease. Matt coming to accept his new "attachment" and settling into home and familiar routines. Toilet training can probably take a back seat for a little while, he has just had a traumatic 8 weeks in hospital so it is only natural that he will regress a little when it comes to these sort of things. And Ella, she is also adjusting to having her little brother back and taking a medication that makes her behave in a way that she most likely can make little sense of herself.
Is it possible to dress Matt in bib overalls during the day and all in one pyjamas until he gets use to the bag?
The worry, anger, frustration, questions, fear and bewilderment are natural and normal emotions Nic and they will lessen over time. I would be lying to say they will go away altogether but they do over time fade further into the background.So yes Nic, it will get better!
:hang: Mate. You can and will make it!
Much love, :Karl:
Dusty. xxxxxxxx
You aren't crazy for missing the hospital hun, not by a long shot. All this is so new, so unexpected and so scary. Is it any wonder that you wish to have the security of knowledge, expertise and reassurance around you, there would be something wrong if you didn't!
It is a time of adjustment for all of you. You and Dan dealing with your children's diagnoses and learning to deal with Matt's stoma with confidence and ease. Matt coming to accept his new "attachment" and settling into home and familiar routines. Toilet training can probably take a back seat for a little while, he has just had a traumatic 8 weeks in hospital so it is only natural that he will regress a little when it comes to these sort of things. And Ella, she is also adjusting to having her little brother back and taking a medication that makes her behave in a way that she most likely can make little sense of herself.
Is it possible to dress Matt in bib overalls during the day and all in one pyjamas until he gets use to the bag?
The worry, anger, frustration, questions, fear and bewilderment are natural and normal emotions Nic and they will lessen over time. I would be lying to say they will go away altogether but they do over time fade further into the background.So yes Nic, it will get better!
:hang: Mate. You can and will make it!
Much love, :Karl:
Dusty. xxxxxxxx
- Joined
- Jun 14, 2011
- Messages
- 6,518
Hi Nic,
I can certainly understand 'missing' the hospital! I felt the same way when my son and I came home. It's scary and stressful when you're worried about your children and so worried that you might make a mistake. When I first had to make my son's formula, set up the pump, check if his ng tube was in the right position, etc. - everything seemed scary! Doesn't it remind you of when you first brought them home as newborns? I realized that I was feeling the same way as when I brought my first child home - worried about 'caring' for a newborn, how to bathe, caring for the cord, sterilizing bottles, afraid I wouldn't hear something while I was sleeping, etc. It became easier with time and I told myself that this wasn't any different - I was learning, would learn and would trust my instincts re 'worries'.
And, I know the the worry and anger is so difficult... I felt the same way last week over so much less than you are dealing with right now. You have so much being thrown at you right now, how can you not be worried and angry??!! All I can say is we all feel your pain and frustration. You have to believe it will get better; you are closer to happier days than you were a month ago, and tomorrow you will be closer yet!
Going 'bit-by-bit' helps me - try to focus on one issue at a time, try to not let your mind race to the next hurdle. You know what happens then..., you start to worry about 'B' while doing 'A', lose focus and begin to mess up 'A' and then feel overwhelmed because 'how are you ever going to tackle 'C' when you can't even manage 'A'?!!'
Wish I could suggest something re Matt's tugging on his bag or Ella's energy... Hopefully, someone on the stoma forum can help you...
Praying for you and your family to come through this as quickly as possible!!!
I can certainly understand 'missing' the hospital! I felt the same way when my son and I came home. It's scary and stressful when you're worried about your children and so worried that you might make a mistake. When I first had to make my son's formula, set up the pump, check if his ng tube was in the right position, etc. - everything seemed scary! Doesn't it remind you of when you first brought them home as newborns? I realized that I was feeling the same way as when I brought my first child home - worried about 'caring' for a newborn, how to bathe, caring for the cord, sterilizing bottles, afraid I wouldn't hear something while I was sleeping, etc. It became easier with time and I told myself that this wasn't any different - I was learning, would learn and would trust my instincts re 'worries'.
And, I know the the worry and anger is so difficult... I felt the same way last week over so much less than you are dealing with right now. You have so much being thrown at you right now, how can you not be worried and angry??!! All I can say is we all feel your pain and frustration. You have to believe it will get better; you are closer to happier days than you were a month ago, and tomorrow you will be closer yet!
Going 'bit-by-bit' helps me - try to focus on one issue at a time, try to not let your mind race to the next hurdle. You know what happens then..., you start to worry about 'B' while doing 'A', lose focus and begin to mess up 'A' and then feel overwhelmed because 'how are you ever going to tackle 'C' when you can't even manage 'A'?!!'
Wish I could suggest something re Matt's tugging on his bag or Ella's energy... Hopefully, someone on the stoma forum can help you...
Praying for you and your family to come through this as quickly as possible!!!
