DC in intensive care & another at home - How do I cope? Think I might go mad!

[twinmam]

I am grabbing 5 mins whilst my DD1 is asleep. Am home from hospital for the first time in days to spend some time with her. Basically what happened is this: DD2 has had a cough I've been concerned about since Jan, mostly at night. Have been to GP several times & virtually been accused of being a fussy mother, nothing to worry about etc. A week ago on Sat she developed a very croupy cough, barking etc and by the evening her breath sounded very heavy. I rang the out of hours dr and we ended up being taken into hosp where she was given steroids for what they thought was croup. She was given 6 doses of 3 diff types of steroids but her breathing didn't improve. They transferred us to another hospital on Tues where there are ENT paediatric specialists. On Wed night she was struggling so much with her breathing they transferred her to intensive care. On Thurs they took her into theatre to do an endoscopy. They were reluctant to as they knew her windpipe was very swollen but decided they would need to put a breathing tube in etc. They found a severe infection but nothing else as it was all too red and swollen. They are thinking she may have an underlying structural weakness, possibly a floppy larynx which has meant the chest infection was so dangerous. They were going to bring her round from sedation today (she has been under since Thurs) but windpipe is too swollen still so too risky so they will review tomorrow. They are using the size of breathing tube they would normally use on a newborn (she is 16 months old) and it is still really tight. Hopefully the antibiotics will really kick in and she can be woken up and have the tube removed tomorrow. They will then do a barium swallow and possibly another endoscopy or look further down at a later date. I feel a bit as if my head is spinning. Just over a week ago we were living a normal life and I was complaining about what hard work it is to look after two babies. In the last week I have held my daughter down whilst they have tormented her, taking blood, repeated cannulas, nebulisers that have terrified her.... Handing her over to the anaethetist on Thurs was the hardest thing I have ever done. I literally felt as if someone was ripping my insides out. And we have our other DD at home. DH is sleeping at home and I am at hosp so we can try and give her some sense of normality. My parents are looking after her and DH's parents have flown back from abroad to help. We are lucky that we have a big support network and that the paediatric staff are wonderful. The consultant even hugged me on Thurs when I was a mess and the surgical team were promising me they would look after her. The anaethetist told me had 3 Dcs of his own and he would take good care of her. They were true to their word because she is still here and I am eternally grateful. I feel so torn though. I feel as if by leaving the hospital something could happen but then I feel guilty for not spending time with DD1 who has been saying 'Mama mama' for the last few days and even kissing a picture of me It has all been so frightening and surreal and I am just longing for an ordinary life. Not really sure why I'm spilling my guts on here other than that in RL I am feeling the need to stay really really strong and positive as that's the only way I'm holding it together. Has anyone else had a similar exp and returned to normal life? How did you cope? What is the best way to get through this nightmare? Thanks

I'm so glad there's a plan! And even gladder the dr was positive and reassuring - I can imagine (actually, feel) your relief. Will be thinking of you tomorrow, and sending all the stamina and clear thinking vibes possible to you, alongside enormous good luck and get well ones to your dd.

Wishing you a good night's sleep meantime, xxx

Have just seen this thread for the first time and want to wish you the very very best for tomorrow and the coming days.

I have 2 daughters and have had the misfortune to have both of them quite seriously ill in hosiptal at different times. I know that gut wrenching worry and anguish and the feeling of having no control of the whole situation. Its truely horrid and I wouldnt wish it on anyone.

Thinking of you all.

I'm so glad that there is a plan in place. I will be thinking of you and your family tomorrow. Hope all goes well. In the meantime, try to get some rest tonight.

Sending positive thoughts and good wishes your way.

I know what you are going through. My DS3 spent 10 nights in hospital when he was 4 weeks old with suspected meningitis and he just wasn't getting better. He was transferred to the children's hospital.

I was in bits and felt so torn as I only got to see my other 2 at home for 20 minutes a day. Would drive home, read them a story before bedtime and then rush back as I was feeding DS3 frequently. It felt like a living nightmare and I spent a lot of time crying on nurses' shoulders.

It breaks your heart when they keep taking the blood and putting fresh cannulas in but try and be strong for your baby because your love will help her so much.

As for your DD1, you have just got to tell yourself that DD2 needs you more at this moment in time and she is being well looked after by people who love her.

I really feel for you, I hope your DD2 is back home soon.

twinmam, I have only just seen this thread and wish you the very best for tomorrow. So sorry your little dd is going through this.

Twinmam - Just wanted to add some more good luck, for and your family.

Ds2 was in HDU at 11mths with pneumonia and fluid on the lung. He had to have a general anaesthetic to put the drain in, and it was the hardest thing we've ever had to do. Ds1 kept asking where his brother was, where I was etc. Nowhere near what you are going through, but I can relate to being split in 2, iyswim.

Thinking of you and your dd herre too and will be praying you get a good outcome tomorrow

wishing you all the best for tomorrow, hope they get some answers. Hard to put into words, but definitely will be thinking of you tomorrow.

How are things twinmam? Have been thinking of you today.

I'm walking on air at the moment: they stepped down DD's meds today and then the anaethetist decided to remove her breathing tube 'to see what happens' (with plenty of back up in place, of course!) They removed it and they now have her on C-Pap which means she is breathing for herself but is getting extra oxygen etc. She is doing really really well. All of her Sats are great and she can breathe!

She hasn't come round yet although they have been gradually stopping all the sedation throughout the day. She seems like she is in a much more natural sleep though and looks very relaxed. They can give her medication if she starts to get withdrawal symptoms, bless her. She did half open her eyes earlier this afternoon and I think she focused on me for a little bit.

We're just in our little room at the mo waiting to go back in after the shift changeover. Have now got my laptop so can actually see what I'm doing rather than using my I phone (DH sorted out internet for me as I said I needed to be able to MN - everyone here has really helped me get the strength from somewhere and to carry on)!

Obviously this is not the end of our struggle. There is still a chance she could have to be reintubated and the next 24-48 hours will be crucial in assessing her breathing etc (apparently when she's fully awake and coughing there could still be problems) BUT she is doing so well so far. We're trying not to get too excited but we're just so thrilled, especially that at some point soon we will have our DD awake.

If all goes to plan the next step will probably be the barium swallow and possibly more investigations as they still think there is something underlying that has made the infection so acute. The things they are thinking of are all curable though so we don't at this stage feel terrified about finding out what is wrong.

It really does feel as if things are moving forwards for us.

Thank you, all of you, for your lovely, caring supportive and wise words. You have carried me through the hell of the last few days with your sympathy and solidarity. I will, of course, keep you updated with the latest which, I hope, will continue to be positive.

Yep made me cry too. My nephew was in the PICU for 2 and half months at birth and that was hard enough. He was the first out of all the cousins (now there are 5 between me and my sis) and I frequently think about how things would be so much harder if we had other children at home to think about. Hope it all goes well for you x

Brilliant news . I am so happy for you and will continue to cross my fingers for further progress.

YIPPPPPEEEEEEEE!
am so pleased for you and will be sending lots of positive vibes. Clever, brave DD and you x

I have to post, I too had a baby in SCBU while having a toddler at home. I cried all night and every car journey, I felt like I was ripping in two, and even though I was surrounded by support, I wanted to scream at everyone because they didnt really understand. Im putting all my positive thoughts to you and your family tonight, I really am. Remember children get so poorly so quickly, but they also recover amazingly quickly too. Also, if your little one is unconsious, at least she cant be in pain/miss you. Be comforted by the fact that while she is sleeping she is happily dreaming and building up strength to fight.Please keep us updated, and offload everything here to help stay strong. Its theraputic to write things down.
Best luck and hugs to you and your family x

I came straight on here tonight to see if there was an update and I'm so pleased you've had good news. It's brilliant to hear you sounding so much more positive. I'm so excited for you that you soon may have her awake. I hope the investigations go well and they can soon find out what has caused this terrible for her.

oh twinmam

I am so so pleased for you and your family

fingers crossed that her progress carries on and the doctors can get to the bottom of why it was so severe! Well done you for being so strong.

It's so good to hear about your DD's progress twinmam.

Lots of thoughts of you and your family here today, and every best wish for the days ahead.

good news - long may it continue

Good news so far then. Still sending you my best wishes. I've been thinking about you and your daughter all day and hoping you would have some good news. Fingers crossed for the days ahead.

Just read this, what a stressful time for you all, your poor LOs (both of them). Hope you are ok, glad to hear things are a bit better.

Wishing your DD a speedy recovery

Oh good news twinmam What a relief.

twinmam, so so sorry to see all this, I only just caught the thread. Very glad to hear dd is on the mend, can only imagine how torn I would feel with one twin at home and one in the hospital. I bet you can't wait to see her wake up. Wonderful that you've got so much support there to help you all get through it.

Am keeping everything crossed for your DD. Good news today, hope it keeps on coming.

I am so pleased today went well. Its so good to read your DD is on the mend.

Hope it continues in the coming days.

glad to hear your good news
fingers crossed for you all