MegaSack DRAW - This year's winner is user - rgwb
We will be in touch
Sorry about this, I just need to get this out and doing so relatively anonymously has worked before. A couple of months ago the good people of STW helped me through a difficult time. My new born son was taken ill at only a few days old.
Unfortunately, two days after returning home he had a second incident. He began choking whilst breast feeding, turned blue and had great difficulty breathing. We returned to hospital in an ambulance. This time was a longer stay than the previous one due, in part, to him having two ALTE's in quick succession.
His blood oxygen was extremely low, he had to be given oxygen and was (still is) breathing at an accelerated rate. A second set of X-rays revealed that there was still something in his lungs. Cue visits from several specialists and the result that he has severe reflux. Medication is prescribed and after a week we return home.
Both my partner and I are still shell shocked from both events, but starting to settle in to the routine of dispensing his medication and keeping him on a strict three hour feeding pattern because of the reflux. Everything is going okay, then a visit from the health visitor reveals he has an Hernia. Not a serious thing, but on top of everything else, not great either.
We were referred to MRI for the Hernia repair and put on a waiting list. Two days later Eb (my son) is screaming for a prolonged period, drive back to MRI, Doctor struggles to get Hernia back in, placed on emergency list. Repair was performed after two days of waiting in Hospital.There were some concerns over operating due to his breathing issues.
Return home and everything seems to be going okay.Then he stops gaining weight and starts passing blood in his stools. Back to Macc children's ward, diagnosed with a milk protein intolerance. The result is having to have milk that tastes foul. Feeding becomes a pitched battle, he is starving, but won't take the feed. Back to Macc after two weeks of this and no weight gain. Dietician gets involved and puts him on Infatrini, a high calorie milk with proteins broken down to a greater degree.
The wonderful staff at Macc insist on taking Eben off us for two nights. They say we look physically and emotionally spent. After two nights rest, we bring him home and all seems to be good. He is feeding well and appears to be gaining weight.
Jump to Thursday of this week and we have an out patients appointment with our respiratory guy. He's not happy with the weight gain and thinks the accelerated breathing may be playing a part. We are sent for another chest X-ray. We get a phone call later that day to say they want to test him for Cystic Fibrosis, we have a sweat test due on the 20th. We've also been referred to a Cardiac specialist (who we have seen before and who did an echo and gave the all clear).
My partner hen finds an unusual lump in her breast. Her Aunt is currently undergoing Radiotherapy for breast cancer. I feel emotionally drained and on the verge of snapping. Trying to hold it together and take one day at a time. I'm not a religious man, but find myself praying that my son doesn't have CF, he's been through enough already. My partner has an appointment at the breast clinic on Tuesday.
I've found myself wandering around bike shops and putting together builds online, just to try and stay sane. At work on Friday I spent a couple of hours just staring into space on the verge of tears. Apologies for the bad sentence construction and rambling nature of this post. I just had to get this out, haven't tried talking to friends or family due to getting too upset.
They are both asleep now, my lovely woman and brave boy. Don't know what I'll do if anything happens to either of them.
Sounds like a really tough situation - hoping things turn out ok for the three of you. Good luck!
I have no words that can offer anything of value, but just know thoughts are with you buddy.
Hope you get it all squared away.
That's bloody tough.
Get on the phone to yr GP and let him/her know how you are so they can give you some support. You shouldn't expect to deal with stuff like that on your own...
Best wishes
Crumbs - sounds like you've all properly been through the mill. Very best of luck with the next few months and hope that getting it all of your shoulders helps a bit.
Hell, I've been having a few problems myself of late, but reading about yours makes me think mine are nothing.
I don't even have a family of my own, so can only guess what it must be like. Not sure what to say apart from I hope everything works out for you all.
I honestly cannot compare to what you are going through, but i urge tostay positive and i hope you come out the otherside stronger than ever having conquered these challanges 🙂
Stay strong for them
I have recently (the end of December) put myself and my fiancée or ex, I don't know any more, (partner of 7 years) and my 2 children in an awful situation where I can't see my children at the moment (it won't take a rocket scientist to work out what's going on) and it's my fault.
I'm struggling to sleep and struggling to deal with the guilt and it's having a huge knock on to my emotions, home life, work life, resulting in an overdose of prescription antidepressants 3 weeks ago and it's all because I can't cope in dealing with what I've done and what is happening. I'm now getting help and have found myself various things to occupy myself to stop the mind from working over time thinking of all the bad shit and worse case scenarios.
Go get help. You don't have to do it on your own buddy. There are plenty of groups out there to help. I'm getting onto TalkingSpace at the moment after psychiatric team said I'm not a severe case and do not warrant their involvement...even though I want it.
Best of luck, my youngest had a ropey introduction to this cruel world (3 weeks intensive care) and apart from what I've put us through the last 4 months they were the worst 3 weeks of my life. I would take all the pain in the world if it meant my kids didn't have to suffer. Email in profile if you want someone at the end of the phone.
I can't imagine what you're both going through with this but you have my very best wishes.
Just take things as they come and try to see positives. You'll get a break for the better soon I'm sure.
Just Focus on the positives and enjoy as much of the time you can with your family. I know how it feels being the one who has to stay strong on the outside and hold everything together.
Doesn't stop you falling apart on the inside, I have had a horrible year in many respects and have just had some terrible news I'm not quite sure I am ready to deal with and sometimes find myself bursting out in tears every time I am on my own.
Just stay strong for them and you will make it through.
Funk, first of all know that you have an entire forum of people here with you. Many of them will have been through what you are going through or similar and it may only take time for that experience to pop up and advise, strengthen and reassure you.
You are in the right place in that you have known you need to ask for help - there's no shame in that - and there will be a lot of advice here that will be difficult to take but will ultimately help you as and when you need it. I know from personal experience.
You're being fantastic and I'm sure both your partner and little one know that (even when tiny they know), so don't worry about talking to others - family and friends are there for exactly these moments and it is these moments in which they pull tighter and ultimately make the family tighter.
I don't presume to know how you get on with those closest to you, but even asking for a coffee with someone to get their take on something can be a help - even if all it is is the relief of you getting it out there and off your back.
If you only use the forum for escapism, use it. If you need it for more we're all here.
That sound like a really tough set of cards your family has been dealt. You said the staff at the children's ward have been wonderful so that is a positive to focus on - they will be doing everything to get you and your family through this. I have seen people offer the advice of " remember to take care of yourself too" and its true - try to get rest when you can, eat properly and do whatever you need to 'keep sane'. if you can eventually talk to friends and family then I'm sure they will be an invaluable support, however you know you can always offload, vent, scream and shout on STW.... we are here for you mate.
don't know what to say but i wish you and your family my best wishes and good luck.
Be strong, but be yourself too. Probably a ridiculous thing for me to say. Work out how best you can serve the both of them, but realise that your partner is a grown up too. Work out how to take the pressure off of her, but with a focus on your son, that way you will be working in the same direction.
We had a much, much less serious worry for a week or so with our daughter when she was nine months old. We were away in a foreign country and she got I'll, probably only with rotavirus, but we didn't know that to start with. She wouldn't take any food or liquids and was really struggling with the heat (she still wanders around in a t shirt when we are all wearing jumpers - she just doesn't do hot weather well). Anyway, getting fluids into her was horrendous. It involved syringing electrolyte stuff into her mouth and forcing her to swallow it. Sometimes by holding her nose. I am probably being a big girls blouse, but at the time it was heart wrenching. However, after the first few times we just went into 'we know what is best' mode and got on with it.
You also mention excellent hospital staff. Use them. That is what they are for (and want to be for). Even if it is 'just' a nurse, ask for them by name again and get them to refer you on if necessary.
Good luck, and don't be afraid to use other people to help.
We're having a shit time at home too - different to yours but still pretty shit. Took me several months to work out that I wasn't taking it as well as I thought I could but I feel better even just for realising that and starting to let people help me deal with it.
Good luck mate. Be strong but accept help and love from others, including your wife.
Thanks for the kind words, moral boosting and offers of support. Really hope the CF test is negative, been reading up on it and his life expectancy would take him to my age, mid thirties. That's nothing. He's so happy in himself, always smiling and playing. The breathing doesn't seem to affect him in any negative way. I just hope the Drs are being cautious and trying to narrow down the cause by ruling everything out.
Can't even begin thinking about my partners situation. Hopefully it's just the result of breast feeding initially and not something more serious. The 20th feels like a life time away. Can't eat or sleep and just feel sick all the time.
Might get in touch with GP. Suffered with depression when younger and just have visions of them throwing tablets my way.
Hope everything works out ok for your, at least they are both getting seen and getting tests done, which can be easier said than done.
Didn't want to put to much of a downer on this with my first post, but seing as others have joined in the venting... might as well get it off my chest.
Found out recently that the baby my OH is currently pregnant with has not been developing correctly (brain mostly) and is not going to make it... got two other healthy kids so trying to stay strong for them but is not an easy time.
I dunno what I can say that will help other than offer manhugs across the internet
cant imagine what you are going through right now, just to remind you that youve done everything you can so far and its important to look after yourself so you can keep supporting everyone else
I'm a heartless bastard and usually don't really care when I read stories like this. But yours has really struck a chord with me.
I sincerely hope that your lad gets better soon and that it is just a milk gland or similar with your wife.
I can't really give you any advice in holding it together to be honest but when I am feeling a bit down our stressed I find a ride really helps. Try and take a day off to ride somewhere you love and hopefully you will be able to sort of reset yourself.
I would definitely go and see your GP. Anxiety, sleep depravation, lack of appetite. It's obviously all getting a bit much and understandably. Avoid tablets if possible...
Having spoken to GPs about stress and depression tablets are not the first resort. Relaxation, de-stressing and peace of mind are their first steps.
You sound strong - your comments on your family show that - but you need to remain strong and looking after yourself will allow you to do that for them. You're not alone in this, but I would advise letting your family too.
And go to the GP. They will help
Cystic Fibrosis is one of the diseases that has a good outlook in terms of future treatments. Just thought I'd try and add a little positivity that you can bear in mind when you worry that he might have it.
😐
Really hope the CF test is negative, been reading up on it and his life expectancy would take him to my age, mid thirties.
In 35 years time we will have cured CF or at least be able to treat it so that individuals have an average lifespan near that of healthy individuals. 35 years is a hell of a long time in terms of Medical Science.
To be blunt, you can cope because you have to cope, but you don't need to alone.
Be strong for them if you feel you need to but don't neglect yourself, take an hour or two, find a mate and let it out. It doesn't have to have a point, but you'll feel better afterwards and likely have someone to support you too.
I can't offer any advice on the rest of it, other than that there's a good chance one day you'll look back on this as a really shit time, but one that passed and got overtaken by all the good times that are yet to come.
Found out recently that the baby my OH is currently pregnant with has not been developing correctly (brain mostly) and is not going to make it... got two other healthy kids so trying to stay strong for them but is not an easy time.
So sorry to hear that. I hope you, your wife and children are finding ways to help you cope.
Unknown, you are right there is no other option apart from coping. Think a call to the GP is on the cards. Lost it the other day with a driver on the commute to work. So close to hitting him, but feared if I started I wouldn't stop. Need a healthier way to cope.
Sending some positive thoughts your way. Speak to your mrs, speak to your mates, speak to your GP, speak to us on here. Sounds like a horrid time for you all. You will get through it but you might not feel that way just now. Hang in there and if you're struggling get some help.
An appointment with the GP should definitely be on the cards. I lost my temper too but at work...With my production director.
Fingers crossed for you op. Don't be afraid to ask for help from your doc or friends and family. Best of luck
Just for the record and to add to my post above, Mrs Removed ended up with some scary lumps after a few weeks of breastfeeding. Like sacks of tatties. Very common to get harmless cysts apparently.
I lost my temper too but at work...With my production director.
I hope you get to resolve whatever it is you are going through and that you and your partner can put it behind you. I've been close to losing it at work a few times. It genuinely scares me.
I had a vile temper in my younger years and was quick to resort to violence. My partner was the driving force behind me turning my life around, calming down and putting the past to rest. I know its stupid and the result of no sleep and being sat here with a bottle of Bourbon, but it feels like this is punishment for my past.
Didn't think I would ever have a relationship, let alone a house, steady job and family. I just want to be the Father that mine wasn't. Didn't speak to my Dad for years, then my brother was killed in a road traffic incident, just crossing the road. Remember being sat in a room with a consultant, mum and sister in no fit state, my partner there for me as always. My Dad, who still hasn't acknowledged the birth of his grandson, and I for the first time agree on something. To turn off the machines keeping my brother alive.
This drink is turning me rather melancholy.
put the bourbon back, down a pint of water and go to bed!!
Apologies, it was foolish of me to post that and to be drinking. Too late to edit now though! Thanks Kimbers, think I will take your advice. Drinking alone (even the fine Makers Mark) and dredging up the past is never a good combination for keeping ones sanity intact.
I disagree. A healthy approach to alcohol is best. Sometimes I savour a fine single malt or pleasant rum once the noise of the day has passed. Being able to control it is the key.
Hey, take care of yourself, your partner and your lovely boy. Struggling to cope is something that far too many folks are feeling and a drop of alcohol, occasional loss of temper and melancholy thoughts about the past are all part of that coping. Find strength in the support of friends and family and please ask for help if you need it. Stay strong together.
Hey funkmasterp, sorry to read of your harsh situation. Any advice I might offer would come across as dismissive of the number of things you're having to deal with. Stay strong, keep yourself healthy so you can provide support to your family. Hope things improve for you and yours.
Funkmasterp that's a hell of a lot to deal with and I can only imagine how tough it is. I would only say that you need to remember that you need support and care too. Being there for your wife and son is taking it out of you so I hope you have a friend or family member who can give you some TLC too.
Bradley, I hope things work out for you.
Try not to worry about the CF. Yes, it's not an ideal situation but it can be managed well - my friend with CF is in her 40s and we love DHing together - her older brother also has CF and he is a superfit roadie.
The outlook gets better all the time.
Can't add anything more constructive than the advice above but both my boys have severe reflux and milk protein intolerances. My wife needless to say is an expert on the subject so if you need any advice with that then I can pass on your details.
Don't let the CF worry you too much, as above, it can be managed a lot better these days. A relative and good friend of mine is rapidly approaching 30 and is very active, he has a special massage bed & the occasional rough spell, but on the whole you wouldn't know he has CFCF
On the not coping/staring into space thing, I know what that's like, the past fortnight has included a fair bit of it, and so will the next I think. I don't necessarily think it's a bad thing though, time to your self is good when you feel so low, I know how hard it is to talk to the people closest to you, when it's supposed to be easy.
I'd recommend talking to someone you're not so close to, or a counsellor, it's counter intuitive, but I find that much easier.
I have nothing to offer re your son except my sympathy, but I bet your wife's fine. Lumps are expected when breast feeding especially when you stop.
Hi
Hope this offers something of help...
Both times my wife was breast feeding and after stopping she had strange lumps, both times to a specialist and it was blocked milk glands...
Thoughts are with you...
@funkmaster, even when everything is "normal" it's tough with a new born so I cannot imagine how tough things are for you. You are doing all the right things and you have the support of the NHS which is actually good in these scenarios. Have you any friends and and family which can help, the little break you had is the sort of thing you need, even a few hours helps. We all need to de-stress whether that's by goofing around with a hobby or a few beverages, as you know keep on eye on the latter though.
Our thoughts are with you, keep us updated.
Nothing extra to add except to say that you know that you can come on here day or night and there will be people who will offer you support and advice. This place is good for that.
As has been said above, perhaps talking to a counsellor rather than close family and friends may be easier.
My father was a counsellor (before he retired) and the NHS would refer and cover the cost of several sessions with him. People would be referred to him via their GP. Perhaps ask if this service is still available when you see your GP.
Good luck to all three of you.
I really don't know what to say except how sorry I am for you. As others have said my thoughts are with you all.
Dig in fella. You are having a really rough time. Find someone to talk to who 'gets it' someone you don't have to apologise to or explain everything. Support groups are great and far less doom mongering than the internet. Make time for yourself (bike shops and rides are great for that. But most of all we wish you and your family the strength to come though this.
Thanks all for the advice and support. It's good to hear that people with CF are living active, full lives. I guess all we can do is wait for the test and subsequent results. There is nothing I can do to change the outcome.
Also good to hear that other people have had issues after breast feeding and that what's happening sounds like a common occurrence. It's just the situation with her Aunt that has thrown us and made us think the worst.
Last night I called a close friend who I haven't spoken to in a while. Combined with venting on here, it felt good. Just to let some feelings out can be a massive relief.
Every word spoken is a little bit of air out that pressure bubble of life.
The kindness of strangers never ceases to surprise and amaze me, but the OP probably knows that.
Take care and never be mute.
When my eldest daughter was diagnosed with cancer at the age of 3 and a half I was inconsolable for 24 hours.......no one has advised it from my skim read of the thread but I advise a bloody good cry if you ain't had one already, then lay off any booze...I didn't touch a drop for 12 months.....and set to the tasks in hand. You will have bad times it's understandable but you will get through it.
If you need time off work with the stress of it all, do it! I was fortunate back the. To still get 4 hrs a week off from looking after my little un in between hospital trips daily etc etc to play a game of rugby and boy did I put big hits in back in the day,
Whatever your sons prognosis, it will change the way you live your lives for the better in my experience and will also make for great kids leading fulfilling lives!
All the best to you and your wife and kids.
OP I am sorry to hear about the problems that you and your loved ones are going through.
I will be sending you positive vibes and get better thoughts this evening.
Can you speak to someone at work to get some time off?
OP have you told work ? If not you should. Also apologise to your boss but explain the situation.
Shit that sounds awful mate. My wife and to a lesser degree son have health problems but nothing that compare to yours. I really feel for you and hope things work out well.
Good evening all. My bosses at work know about the situation and I've already had about five weeks off (including two weeks paternity). I might speak to them about the possibility of working reduced hours in the short term.
As mentioned above, the kindness of strangers can be amazing at times. When stories about the Internet are on the news, why is it never about this sort of thing.
suggsey, how is your daughter doing now?
I'll update this when we get news about the missus and my baby. Had a tricky day today, lots of inconsolable screaming from him, think it's the acid from reflux so have the community nursing team coming out for a check tomorrow. Also received a phone call telling me my Grandmother died last night. She had a good innings, eighty nine and went peacefully in her sleep.
stay strong
I hope all of this sorts itself out funkmaster.
I'll never forget when my son, at 10 days old, was diagnosed with CHD and severe reflux. He was due to have open heart surgery at approx. 1 year old but his heart began to fail when he was five month old. It was a long 5 months, dropper-feeding him, watching him throw up 75% of his already tiny milk intake and struggling to gain any weight and miss his milestones.
Both my wife and I would have good times and bad times. One feeling positive and supporting the other and then the roles reversing. Other things that helped were having time to ourselves. An occasional poker night for me, manicures etc for the wife.
Our son, now 2, is thriving and besides the big scar on his chest, has no long term issues.
We got through it together and as other people have suggested, now look back on it as a shitty time but one that makes us appreciate what we do have. I hope you can say the same, sooner rather than later.
Good luck, funkmasterp. I can't add anything except to say that it's the moment when everything seems impossibly grim when the first things start to click back into place almost unnoticed to begin with.
Hope things sort out for you too, Bradley.
Best wishes to both.
The birth of our second daughter was pretty traumatic, mother and daughter nearly died, both were in ICU for a period of time afterwards.
The stress of it crushed me, I felt like I was living someone else's life for a few weeks afterwards, I made stupid irrational decisions, and even blamed our baby for nearly killing my wife.
It took me a while to get my head around it.
I think the brain is just like any other part of the body - if you stress it too much it'll snap.
Good luck, and as others have said, don't stress too much about the CF, it isn't a death sentence.
It's totally normal you feel like you can't cope. I hope both possibilities turn out for the best and you try to keep yourself sane however you can. Sometimes life throws you a shitty roll of the dice so all you can do is manage. Going somewhere (be it a quiet room, the woods, the pub with a mate or STW) and feeling sorry for yourself is totally fine; don't believe you need to be superman, sometimes just getting it out there in some way is fine. You're handling a lot of stuff and if you're still managing to be there for your wife and son, you're doing everything anyone could expect.
Keep on keeping on.
We've had some good news today. The cardiac specialist has seen the chest x-ray and has no concerns. We will just see him at a clinic in June. One down, two to go 🙂
Thanks again everyone for sharing your experiences and for the words of encouragement.
Excellent news
Just seeing this now. I can't say or offer much but my very best wishes.
So sorry to hear what a tough time you and your family are having. Make sure you have people to talk to and support you if you can. Hope everything works out alright in the end.
Good news is freakin' great funkmasterp - keep it coming and stay positive 🙂
The missus had her appointment today. It looks like a blocked milk gland, but they have referred her because of the situation with her Aunt. Such a massive relief.
Just the sweat test next Tuesday now. It's my grandmothers funeral the same day though. Funeral is back home in Yorkshire, I think she'd understand if I can't make it.
Thanks again everyone. It's genuinely helped to be able to vent on here (for the second time in three months). It's a decent little community, so much more than just bike advice.
😀
Good news!
8)
Wonderful news.
Such a relief for you all.
You probably heard of all the common remedies for a blocked duct but my wife had hers sorted by acupuncture and a bloody good massage.
Thoughts for you and your son.
Nice one funkmaster. You're doing a brilliant job. Talking is a massive help, I am living proof of that. Keep us updated fella and I really hope it all works out in the end 8)
good news 😀
Had the results from the sweat test and he doesn't have CF. That was pretty much the longest two weeks of my life. Can't believe what a relief it is.
The specialist now wants to perform a CT scan of his chest, as he is determined to get to the bottom of the breathing issue. The support from the Doctors and Nurses has been thoroughly great. I am planning on riding the Transpennine trail with some friends this summer to raise money for the Children's Ward at Macc.
Thanks again all for the encouragement and support 😀
Great news all round. 🙂
Aw, that's fantastic news! 😀
😀
Good news. Hope whatever it turns out to be can be sorted....come back and tell us when you want to be sponsorship.
😀