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

143 replies

twinmam · 29/06/2009 11:44

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

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Elibean · 06/07/2009 23:03

Fantastic

I am just so glad. Sounds as though that little dd of you is on the mend, and its true, they do bounce back as fast as they go down!

Will be looking out for your further updates, xxx

Northernlurker · 06/07/2009 23:14

Great news! Keep hanging in there.

monkeyfacegrace · 07/07/2009 08:37

Morning,
How did the night on CPAP go then? Hope alls still on the up x

twinmam · 07/07/2009 10:53

She is off Cpap and has been for almost 2 hours! No breathing assistance whatsoever. She woke up, looked at me and said 'Mummy'. I thought my heart would shatter with happiness. We are still not out of the woods, we still have a long way to go but we are moving in the right direction now. Her breathing is still quite noisy but she is not having to make a huge effort to breathe like she was before. Of course, she may have to go back on Cpap but I am so grateful that she CAN breathe on her own.

She is suffering pretty awful withdrawal from all the meds, shaking and looking quite grim but they are going to give her something to ease her off it.

We've been booted out for rounds again - there is a little boy opposite DD who, I think, is part of a child protection issue (head injury, police have been etc) so clearly they can't have me around eavesdropping. I'll be straight back in there with her as soon as I can though and we are going to take her twin in to see her this afternoon.

I've had a cuddle this morning and, god, the feeling of having her cuddle me right back was amazing. It sounds weird but it is almost like she has been born all over again especially as I didn't get to hold her when she was born as she was whisked off to SCBU.... I just feel so very happy. I know, I'm on a huge and bizarre high at the moment! I know we have tough weeks ahead of us yet, further explorations and so on but I really feel as if we are one step closer to our lovely ordinary little life.

Thank you, all of you, so very much. I'm off to see her again as they've just rung through but will update when possible.

OP posts:
Saggarmakersbottomknocker · 07/07/2009 11:19

Lovely to hear the relief in your post twinmam.

In a way I think this period is more physically draining because once they're awake you just have to be by their side don't you? Do look after yourself. Hope she continues to make forward steps now and they can ofer some explanation as to why she was so ill.

monkeyfacegrace · 07/07/2009 11:57

Well done to you and your dd. Things are defo going in the right direction! And I do hope the little boy isnt an abuse victim, maybe an RTA or similar. The other alternative is too awful to bear x

stickylittlefingers · 07/07/2009 12:22

brilliant news! I'm so relieved to hear it. Do look after yourself, and well done for keeping it together over such a difficult time. Hope is all onward and upward from here.

RedLentil · 07/07/2009 12:34

What a wonderful moment for you and your DD, twinmam.

I expect the waves of shock about what has happened will keep hitting too, so make sure you are taking all the help you can get from those around you.

wuglet · 07/07/2009 13:35

Fantastic news!

Bet the twin reunion will be wonderful too.

So glad everything seems to be coming right.

Elibean · 07/07/2009 14:15

Just delighted to read your news, Twinmam, and very relieved for you!

She certainly is bouncing back, bless her - hurrah for her, and well done you...do agree with the others, really important to keep taking care of yourself because now dd is recovering, your own recovery process (from the trauma of it all) will start too...eat, sleep, keep posting!

Look forward to hearing how she's doing

hotpotmama · 07/07/2009 14:35

Fab news, is so lovely to read and I don't even know you. You must be feeling so relieved. Agree with Elibean, you have to take care of yourself now too.

GColdtimer · 07/07/2009 14:48

Really pleased twinman, its all sounds really positive. And so lovely that you can take her twin in to see her.

I know you still have a way to go but these moments when you feel positive and happy give you the strength to get through the more difficult times, although hopefully you are through the worst of it now.

Northernlurker · 07/07/2009 16:15

Great to read your update

monkeyfacegrace · 07/07/2009 19:34

Hi twin,
How have things been today then?
Hope you're doing ok x

oooggs · 07/07/2009 20:22

twinmam - great news and I am sure that a visit from her sister will perk her up too.

twinmam · 07/07/2009 20:41

Things are continuing to go very well. DH is with DD whilst I get something to eat and some MN time!

DD hasn't had to go back on the CPAP and they are talking about transferring her out of PICU tomorrow. She is having pretty bad withdrawal & they want to keep her under observation tonight. She is OK when being held by me but gets distressed if me or DH arent there which then makes the shaking etc much worse. Hopefully that will wear off soon as it's pretty rotten for her.

Largely because of the withdrawal symptoms we're holding off on bringing DD1 to see her twin. We're planning on having a brief visit tomorrow so they can catch up and then obviously more and more time together as DD2 improves.

The plan is to keep her in hospital for a while longer to make sure she is OK and to do the barium swallow before discharging. We'll then come back to see the consultant in 6 weeks. At that stage she may have to have another exploratory op but the consultant said he wanted to give her a chance to recover from this awful infection first.

We're over the moon. It just feels like a part of me that was missing has been returned which of course is exactly what's happened.

I think we're in for a long night as she will need us around but I'm so grateful that we're back to that situation even if it is exhausting. I know I will probably collapse in a big heap once we get her home and get the all clear (or as near to it as we can)! Luckily we have seen just how amazing our family and friends are and we will have them to support us. Likewise I've discovered how brilliant MN is to get all those hidden too difficult to discuss feelings out so no doubt I will be coming on here when it all hits me and I begin to process what I've been through.

I have had some food and a bit of time so will go back to her now. DH and I will do shifts tonight so we'll both get some sleep. I might try and persuade the nurses to find a comfy chair for me to snuggle up in with DD and close my eyes for a while!

Thanks everyone

OP posts:
foxinsocks · 07/07/2009 20:44

what fabulous improvement. So pleased you can get cuddles and sob at her saying the word 'mummy'!

Elibean · 07/07/2009 21:02

Excellent news.

Wishing you all a peaceful (! relative) night and an end to PICU. I do remember leaving HDU and going on to the main ward being very odd, less monitors, no nurse in the room all the time - took a bit of getting used to, but lovely at the same time.

I'm glad you were able to process a bit on MN, seems to me thats a huge part of what its here for

jabberwocky · 07/07/2009 23:55

Fabulous news, twinmam! I'm just so happy for you and your family.

1dilemma · 08/07/2009 00:21

yeah great news

onward and upwards from here

hope you all get some sleep

Saggarmakersbottomknocker · 08/07/2009 09:30

Hope you get to the ward today twinmam. Like Elibean I remember it as feeling a little scary after having so much support in ICU - like someone suddenly took away my safety net.

How is twindad coping?

twinmam · 08/07/2009 15:31

Well, we're still in PICU but may transfer to HDU later today or possibly tomorrow. It largely depends on whether they need DD's bed in PICU which in a very selfish way is a great position to be in ie she's not considered to be in as much danger.

Ironically the main reason she is still in PICU is not what she came in with; her breathing is great and the consultant is amazed at how well she is doing considering the extent of inflammation in her windpipe. Even when they extubated on Mon it was terribly swollen with no give whatsoever. The reason they now want to keep an eye on her is that her withdrawal symptoms are so severe. She has been hallucinating and suffering whole body tremors which has veen very distressing to see. They are doing all that they can and weaning her off much more slowly than originally planned. They tell us we could be in for a rough few days...

Thankfully this will not last, however distressing it is for DD (and us) at the moment. They are even talking about discharging us next week and bringing her back for all the necessary investigations as an outpatient which is fantastic news.

We did manage to sleep in the end last night. We were all set for shifts and I had DD asleep on me at about midnight then I got kicked out of PICU again as there were problems with the little boy I mentioned earlier. (Sadly, though I hate to jump to conclusions, I fear it is a child protection issue as there have been endless social workers, police, police photographers etc plus the parents referring to when social services would let them visit. Too awful to think of, poor little boy...) They had given her something to help her sleep & I managed to get her into her cot easily. The nurses rang me at 6 to say she was awake. They will give her something to help her sleep again tonight which means we get to rest then to spend all day with her.

DD1 came to visit her twin today It was utterly adorable and DD2 responded so well, seeming instantly much calmer and happier. They kissed and cuddled and stroked one another's faces. DD1 kept saying 'Awww'. The nurse let us go onto the ward and in the playroom so they had a bit of a play but DD2 got tired very quickly and I don't think the farm animals mural was helping her hallucinations! We'll let them spend more time together tomorrow.

We're getting there, I think. I just wasn't really prepared for this bit so focused was I on having her awake. I wasn't so naive that I thought she'd wake up and be back to normal but I had no idea the withdrawal could be so severe and so awful for her.

Twindad is doing OK thanks, Saggar. He's been great all the way through although we've had to accept that we deal with stuff in different ways and support one another in that. He is with DD at the mo and I'm having a break as have been in PICU pretty much all day except for loo breaks! He suggested I come and have a rest which was sweet of him. He is finding this particular part of things really upsetting. I think to both of us it just seems to unfair that in trying to make her well she has ended up with something else she has to go through. We know that it is temporary though - we just wish she knew it too!

We WILL get there though and things will be even better than we'd hoped for once we get this phase out of the way

OP posts:
Saggarmakersbottomknocker · 08/07/2009 19:32

Yes you will get there

I asked about twindad because I know that dh and I dealt and still deal with dd's problems very differently. He basically hands her over willingly and has pretty much total trust. I on the other hand have to know everything and probably drove the PICU staff mad with endless questions. Even now I still visit her consultant with notepad lol. At first I took dh's reluctance to spend time in PICU for example as a bit of a slight; like he loved her less somehow but I did come to realise that we just cope differently and that there are no rights or wrongs in the way we handle it. I'm glad you are supporting each other.

And yes withdrawal from the meds sucks. I remember having a complete panic on because initially dd was very floppy and didn't focus and it seemed to go on for days interspersed with almost manic episodes when she was the complete opposite. It must be an awful feeling. Hope the next few days pass quickly.

beesonmummyshead · 08/07/2009 19:40

not posted before twinmam but have been following your story. Thank you for updating us and i'm really, really pleased and relieved your dd is getting better. I look forward to hearing that she has come home

samsonthecat · 08/07/2009 19:47

Its good to hear she is getting better. I'm still thinking of you and your family and sending you all my best wishes