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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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twinmam · 04/07/2009 10:04

Maltesers sorry more questions: did he go home with the trachi? How did you cope? Did if affect his speech development? I'm so glad it's all over for you AND that he has forgotten although of course you never will. Thank you so much for sharing this with me. It is so nice to think of a time when this will all be over, difficult to remember when we're in the midst of it and also difficult to chase away those dark fears in the middle of the night that she won't make it which is just unthinkable.

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Elibean · 04/07/2009 11:05

Ah Twinmum , I'm sorry its taking longer than you - and we - hoped. Poor little poppet, I am sure she knows you are there and am so glad you got the cuddle. I do remember how very important it was to have that, when I got low like you, and I'm sure it was good for dd too. Now you know its possible, perhaps you could ask for another when the time feels right.

I agree with Saggars, it does sound good that the chest x-ray is improving, and hopefully this is the dark before the dawn...I did wonder, is she being nursed on her side/back/front? It may be impossible with intubation (dd had CPAP, which isn't the same) but if she does, by any chance, have a floppy larynx its very usual for children to breathe better on their fronts or sides. dd started on her back, but after a few days was turned and her sats were better as a result.

I'm sure the doctors know far more about this than me, though, so just a thought!

Thinking of you lots, and hoping you are eating and getting some sleep when you can - its v important too. xxx

anniebear · 04/07/2009 16:03

you will get through it but it may take a while

we have nearly lost our little girl (a twin) a couple of times

was a nightmare trying to make life as normal as poss for her twin sister

It is a horrible thing to go through

Hope she is home soon xxxxx

maltesers · 04/07/2009 16:13

TWINMAM My son at 14 months had very noisy breathing and ironically enough it was the day after the MMR jab. I think because he already had a narrow airway the MMR just tipped him over the edge maybe.Maqybe the Mumps part of the vaccine swelled his throat a bit. N>B> If your child, everyone,,, is normal and well, i think the MMR is fine.

His breathing after the jab, bout 24 hours later just got really noisy and he went into hospital that nite and by sunday morning they put him on a drip and on monday a.m. he went into theatre to be intubaited. They tried steroids, adrenaline everything to reduce the swelling in his airway in ITC, but by the following Fri nothing made any difference. They couldnt take the intubation tube out safely and let him breath by himself, so they had to perform a Tracheotomy. Went he came round the following day the tears poured down his cheeks, as i held him in my arms. He looked at me as if to say, "What have they done to me Mummy? Why ?". It broke my heart. Sorry, dont want to upset you Twinmam ,, cos i know its so hard for you. It will be ok i think for you. They may have to perform a Trachy, but at least you DDs' airway will then safe. The Trachy surgeon said that no child gets to 18 yrs with a Trachy still in situ. things are normally put rite during childhood. As you know their airway is so small when still a toddler. Hugs, Hugs, and keep me posted. Lots of love M x x x x

maltesers · 04/07/2009 16:20

Yes, we took him home with the Trachy in , but not for another 5 weeks, by which time we were fully Trachy trained and Child-CPR trained. They had to be sure we were safe to care for him at home and know what to do in any emergency. It was hard work maintaining a clear,, unblocked artificial airway in our son.
My sons' speech was obviously non existent when the trachy was in , and he attended the Speech Therapy Dept, as a matter of course. However, after the trachy was out, 10 months later after it was put in, his voice came back immediately and herealised how he could try to make sounds and talk. It was marvellous ! 8 Weeks after decannulation (tube out) , his speech at 24 months was at the rite stage for his age. He was a normal little boy.
I feel very emotional talking bout all this , cos i know what you are going through. Tears are in my eyes !

twinmam · 04/07/2009 23:50

Thanks maltesers. Excuse typing - am attempting first go at MN on my i phone as am in my little hospital bedsit. I'm so sorry for what you went through and so glad it's behind you. Your situation sounds so incredibly similar to ours that it's quite frightening. The hosp are denying any link with the jab & I agree with your theory about it exacerbating a problem that's already there. Her twin had the jab at the same time and is fine. I am starting to get scared about the possibility of a trachy but it helps to know as much as I can about all the possibilities in order to prepare myself. I guess I just have to think that if she has to have it then it's to save her life and anything is better than losing her. It still feels so dreadful though, like mutilation - I so felt for you when you described your ds & his silent tears. I guess this is the hardest bit of being a mother, doing what's best for your child even when it hurts them and they don't understand. Thank goodness my dd will forget & your ds has forgotten these early years tho clearly it still haunts you and I know I'll never forget! I am hoping so much that we won't have to have a trachy - the drs are still talking about waiting for the swelling to come down - but I have to accept it's a possibility as she's had her tube in now for 9 days. They will be reviewing on Mon so we should be able to have a chat with the consultant then. I keep sobbing tonight because I miss her so badly. I'm aching for her. I'm also sobbing at the thought of not hearing her voice. She loves to sing and babble and talk and really it's just unbearable to imagine losing that. I know I'm jumping the gun and hopefully it won't come to that and of course if it does we'll find a way to cope just as you did.
Sorry this is turning into a mammoth spill! Thanks again and still for the messages of support which are a real boost to me. I got a cuddle again today and it feels so good to hold her. As time goes on though I am just feeling more and more lost and grief stricken. I would never have imagined being away from my baby for 9 days ( and counting). Of course she's there but not there. I wonder where she is, the essence of her & if she's dreaming and if she's missing me. When the sedation is light there's signs of her - she stamps her feet and waves her arms - but other times she's completely under. I keep hoping to wake up and find this is all some horrible nightmare. I know I need to count my blessings: she is still alive, she is safe but I just miss her more and more each day and I'm so frightened of what's to come.

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twinmam · 04/07/2009 23:56

Elibean - forgot to say thanks for your continuing kindness & advice. She is on her back or either side - she is re-positioned every 3 hours to prevent bedsores etc. It's interesting what you say about lying on their front. Dd is a tummy sleeper & her cough has always been worse at night. When she had the crisis that night she went into intensive care she had been sleeping on her back then turned onto her front which seemed to set off the awful coughing fit that meant she couldn't breathe. It does seem to fit with the floppy larynx situation. The big thing at the mo is getting the swelling down though which I am hoping and praying will happen soon.

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twinmam · 05/07/2009 00:00

Eli - just re- read your post and realised you said children are more likely to breathe better on their front which isn't the case for DD. Oh well! I'm just trying to second guess everything at the mo which prob isn't sensible eg getting myself in a state at the thought of a trachy when it might not even happen but I just want as much info as possible. I do have a lot of faith in the medical team but I guess I feel more in control when I'm aware of everything that might happen, especially as it seems there are no straightforward answers.

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Saggarmakersbottomknocker · 05/07/2009 08:45

Just come to check in on you twinmam. Hope you got some sleep. And get better news on Monday. x

strawberrycornetto · 05/07/2009 08:58

Hi Twimmam, sorry I don't have any specific advice but I just wanted to say I am thinking of you. I have been in hospital with my DS and it does tear you apart to be away from your other child. My DD doesn't even seem to remember though, if that's any consolation. I hope you get some positive news on your DD soon.

brimfull · 05/07/2009 09:13

So sorry you are still going through this...

sending massive positive vibes and praying for a quick recovery for your dd .

ilovesprouts · 05/07/2009 09:22

hi just read your post ,just want to say im thinking of you all ,

DrCosyTiger · 05/07/2009 09:38

Twinmam, I don't have any advice either I'm afraid but just wanted to say that I am thinking of you. You have soooooo much love and support out here and whatever happens you will be strong enough to get through it. Keep us in touch with what the consultant says on Mon.

Elibean · 05/07/2009 10:31

Twinmam, I do so understand the fear. I hope you got a good night, and that both dds did too...no, it doens't sound as though lying on her tummy helps your dd. Nothing conclusive in that, but afaik the outward signs of a floppy larynx tend to be very noisy in-breath especially when asleep, worse on the back/easier on the front or side. I'm not sure if thats the same if the 'floppy' part is lower down, but in dd's case it certainly held true.

I also really understand the need to know, to have information and feel prepared - I had that too, to the point where after a week new staff coming on duty after their Xmas break mistook me for a doctor No, just a worried parent feeling out of control, but I think its very normal and sometimes pays off, too.

Hoping hard that the swelling goes down as the infection recedes, and that if she does need a trachy - and I hope she doesn't, obviously - that its only for a short while.

xxx

twinmam · 05/07/2009 19:53

Well, just when I thought I couldnt take any more of this endless not knowing they have decided to take her back into theatre tomorrow....

They will remove the tube and do some exploratory work. If there is anything they can repair there and then they will. If they dont find anything they will, if possible, bring her round and do a barium swallow which should give more info. If she can manage without the breathing tube they will leave it out for now but obviously they may need to put another one in. If they find something that needs prolonged treatment they may have to do a trachy to remain whilst that treatment (e.g. ops) is carried out, prob in another hospital.

Even if they have to intubate again there is a time limit to how long she can remain under and intubated so they are keen to get it all figured out. The dr said they wouldnt want to keep her intubated for any longer than 3 weeks, giving us another week and a half.

Whilst we have no answers yet I feel much happier now I feel that we will have a much clearer picture tomorrow. DH has taken the day off work as we feel it will be a day requiring much stamina, questions etc. I have come home for the evening as I want to be ready for it all tomorrow.

Please think of us and wish us luck.... I feel more positive than I have for days, especially as the dr reassured me today that they are not concerned and they have seen children react in the same way and get completely better which was music to my ears. I know this is not the answer to everything but it feels at least as if we are moving forwards.

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GColdtimer · 05/07/2009 20:22

twinmam, I am so pleased you have a way forward. I will be thinking of you tomorrow and wishing you all the best. Your posts have been so elequont and so moving and I am glad you feel more positive now there is a "plan".

brimfull · 05/07/2009 20:35

oh good to hear there is going to be some progress

will be thinking and praying for you and your dd

wuglet · 05/07/2009 20:42

Feeling for you at what must be a heartbreaking time but glad to see there seems to be a bit of a plan in place.

Hope everything goes well tomorrow and in the days and weeks ahead.

RedLentil · 05/07/2009 20:43

Will be thinking of you and your family tomorrow twinmam.

samsonthecat · 05/07/2009 20:55

I couldn't read this and not post. I am sending you every positive vibe I can for tomorrow. Your posts have had me in tears, my DD2 has been in hospital twice over night at 7 months old and I will never forget how bad it was leaving DD1 at home and looking at tiny DD2 in her hospital cot with a canula in her tiny arm. Your DDs are very luck to have you and your family around them. I hope everythig goes well for her tomorrow.

strawberrycornetto · 05/07/2009 21:09

Hope everything goes well for you all tomorrow. I will be thinking of you.

oooggs · 05/07/2009 21:20

twinmam - you are doing so well holding it all together. 16mth old healthy twins are hard work (and don't I know it) but dividing yourself and your family up must be terrible - thinking of you all and hoping you have some good news soon

Saggarmakersbottomknocker · 05/07/2009 21:23

Thinking of you twinmam. Hope you have some answers tomorrow.

mumonthenet · 05/07/2009 21:36

twinmam, what you are going through must be a torture, and you are doing a fantastic job keeping it together.

Thinking of you.

AbbyLou · 05/07/2009 21:42

I'm so sorry this is happening toy our dd, you and your family. I have no advice as, thank god, i have never experienced anything like it. However, your posts have made me cry, they are so full of emotion. I hope you get some answers tomorrow and you start to see some improvement in your little girl.