@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.

😀