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One twin in intensive care and the other at home. Has anyone been there?

(18 Posts)
twinmam Sun 05-Jul-09 08:06:42

Hi. Have already posted in children's health on this and had lots of support but have some more twin- specific questions/ dilemmas. Please excuse typing as using I phone whilst sitting in my little hospital bedsit. Will be as brief as I can with background: basically DD2 has had worrying cough since jan but GP sent me away virtually accusing me of being fussy. 2 weeks ago yesterday I took her to out of hours dr with croup like cough & heavy breathing. We've been in hospital since and on the wed she was taken into intensive care as her breathing was so bad. They took her into theatre on the Thursday morning to have a look - found a lot of swelling & mucus and tests confirm infection. The docs are also thinking she has done kind of underlying structural weakness such as a floppy larynx but everything was too swollen to look properly. They put a breathing tube in - the size they'd normally use for a newborn and she is 16 months old. She has been under sedation with the breathing tube in ever since making it 10 days now. They were expecting the swelling to go down and to extubate within 48 hours but there is no reduction in the swelling at all which is beginning to get very scary & frustrating. I miss her so much and am also beginning to worry about the likelihood of a trachy. Anyway, her twin sister hasn't seen her now since the day before the op. Before that DH or my parents were bringing her in to play with DD2 in the hospital play room. They are still bringing her every day to spend a few hours with me and I've been leaving hospital to take her to the park, put her to bed or be there to give her her breakfast. I miss her too very badly and feel guilty but also find it very hard to be away from the hospital. It's making me feel very torn. In typical 16 month old style she's doing brilliantly and is my one ray of light at this very dark time. We're lucky to have a big support network of family and friends and DD1 is in her own home surrounded by lots of people who love her which must help her retain a bit of normality. What im wondering is what impact this must be having on DD1. She is missing me but at least we spend time together each day. What about her bond with her twin? She must really miss her but is too young for us to explain. When we thought DD2 would be under for just 48 hours it was easy to make the decision not to bring Dd1 into intensive care but we're ten days in and still no change. Of course, this can't persist forever. I don't know a time frame but I know that if they can't bring the swelling down she will have to have a trachy which just seems so hideous for my little girl who loves to sing and chatter, like mutilating her. I know that we have to do whatever will save her life but really it just seems so wrong and awful. Anyway, should I take DD1 into intensive care to see her sister briefly? Would this reassure her or frighten her? Dd2 is unconscious and hooked up to lots of machines. I'm hoping to talk to the consultant on Mon to get a clearer idea of what their plan B is so we might then know that is she's not ready to extubate by a certain day then they will do the trachy...
Has anyone been in a similar situation? Any thoughts on how to make this as easy as possible for my LOs?

Littlefish Sun 05-Jul-09 08:51:50

I hope you don't mind twinmam, but I have broken this up into sections to make it easier to read.

From Twinmam.

Hi. Have already posted in children's health on this and had lots of support but have some more twin- specific questions/ dilemmas. Please excuse typing as using I phone whilst sitting in my little hospital bedsit.

Will be as brief as I can with background:

basically DD2 has had worrying cough since jan but GP sent me away virtually accusing me of being fussy. 2 weeks ago yesterday I took her to out of hours dr with croup like cough & heavy breathing. We've been in hospital since and on the wed she was taken into intensive care as her breathing was so bad. They took her into theatre on the Thursday morning to have a look - found a lot of swelling & mucus and tests confirm infection. The docs are also thinking she has done kind of underlying structural weakness such as a floppy larynx but everything was too swollen to look properly. They put a breathing tube in - the size they'd normally use for a newborn and she is 16 months old.

She has been under sedation with the breathing tube in ever since making it 10 days now. They were expecting the swelling to go down and to extubate within 48 hours but there is no reduction in the swelling at all which is beginning to get very scary & frustrating.

I miss her so much and am also beginning to worry about the likelihood of a trachy.

Anyway, her twin sister hasn't seen her now since the day before the op. Before that DH or my parents were bringing her in to play with DD2 in the hospital play room.

They are still bringing her every day to spend a few hours with me and I've been leaving hospital to take her to the park, put her to bed or be there to give her her breakfast. I miss her too very badly and feel guilty but also find it very hard to be away from the hospital. It's making me feel very torn. In typical 16 month old style she's doing brilliantly and is my one ray of light at this very dark time.

We're lucky to have a big support network of family and friends and DD1 is in her own home surrounded by lots of people who love her which must help her retain a bit of normality. What im wondering is what impact this must be having on DD1. She is missing me but at least we spend time together each day. What about her bond with her twin? She must really miss her but is too young for us to explain. When we thought DD2 would be under for just 48 hours it was easy to make the decision not to bring Dd1 into intensive care but we're ten days in and still no change. Of course, this can't persist forever.

I don't know a time frame but I know that if they can't bring the swelling down she will have to have a trachy which just seems so hideous for my little girl who loves to sing and chatter, like mutilating her. I know that we have to do whatever will save her life but really it just seems so wrong and awful.

Anyway, should I take DD1 into intensive care to see her sister briefly? Would this reassure her or frighten her? Dd2 is unconscious and hooked up to lots of machines. I'm hoping to talk to the consultant on Mon to get a clearer idea of what their plan B is so we might then know that is she's not ready to extubate by a certain day then they will do the trachy...
Has anyone been in a similar situation? Any thoughts on how to make this as easy as possible for my LOs?

twinmam Sun 05-Jul-09 10:43:45

Thanks Littlefish. Still getting the hang of MN ing via I phone!

Frizbe Sun 05-Jul-09 10:55:45

{{Hugs}} what a horrible situation for you to be in, (I hope the 1st doctor learns a lesson from this) I don't have any personal experience of this, but I think I would take your other twin into see her sister if her sister is lucid enough to know that her sister is there, helping her along etc. I wish her a speedy recovery.

twinmam Sun 05-Jul-09 19:41:32

Thanks Frizbe and yes re first dr. Am constantly composing a letter to him in my head at the mo as want him to know that he really shouldn't be dismissing worried mums in that way. DD2 (the one in intensive care) is not lucid at all - she is totally unconscious unfortunately.

We are hoping to get some answers tomorrow as they are going to take her back to theatre to have another look and make some plans so we might have a clearer picture of where we stand.

I have decided that if we find out the plan is to keep her under sedation for a few more days I will def take her twin to see her just to reassure her that her sister is still there, just asleep. In some ways I wonder is she might cope with it better than we do!

TheProvincialLady Sun 05-Jul-09 19:45:38

Oh twinmam I have nothing useful to add but I just wanted to say that I am so sorry that your daughter is ill and that you are going through all of thissad I hope she makes a good recovery soon and that she doesn't need to have the trachy. Though if she does, she will still be just as beautiful.

twinmam Sun 05-Jul-09 19:58:50

Aw thanks TheProvincialLady, what a lovely thing to say and you know, of course, you're right. She is totally utterly beautiful and I think our worries are more about our hang-ups IYSWIM than anything that will bother her. The nurses tell us that children tolerate trachies really well and although I will feel as if we've robbed her of her voice, it will not be permanent. Anything that saves her life is something to be grateful for and not to resent. Of course, I'm hoping we'll be fortunate enough that it wont come to that but if it does then we will deal with it.

Thanks for your lovely words.

twinmam Sun 05-Jul-09 19:59:27

And the lovely words of each and every one of you who has responded as it really has made a huge difference to my morale.

Littlefish Mon 06-Jul-09 07:30:12

An adult friend had a trachy about 10 years ago. Within a couple of years of it being taken out, all that remains is a very small, hardly noticable scar on her throat. A small price to pay for the gift of life smile.

I hope your dd makes good progress towards a full recovery very soon.

miniandme Mon 06-Jul-09 12:40:21

Twinmam,you have my sympathies splitting twins up is so hard. I think you know your girls best and only you know how they will react,especially your healthy girl as obviously her sister is unconscious.
Personally i have found with my twins if one is ill in any way the other wants to be very very close by and seems sometimes to be the only person who can settle the ill one.Last night Jack was ill with his asthma and Abby was up crying yet he never usually disturbs her with his crying,it seemed because he was ill and struglling she was up too. My twins are 17mths and my best friend has 5 yr old twins,they are the same,if one is ill the other is right by their side. I would go for taking your healthy little girl in to see her sister,children dont see the machines and stuff as fearful as we do because we know what they mean and what they are doing i.e breathing for our very sick child,whereas children dont know that so it doesnt scare them the same-hope that made sense.
Sorry have rabbled on but will keep a watch and see how your girls are doing.

Sunshinemummy Mon 06-Jul-09 12:52:59

Don't have any advice twinmam but I hope your little girl gets well soon.

jennyroper Mon 06-Jul-09 22:30:55

i agree with you miniandme - cxhildren don't always see the same stuff as frightenening. They are used to seeing new things every day this may well be chalked up in her brain as just another thing.
but i really, really feel for you with your predicament. the stress must be immense. i wish you all the best

twinmam Tue 07-Jul-09 20:49:03

Well, things are certainly looking up for us since I last posted! DD2 is now conscious and breathing without assistance! She is still in intensive care but they removed the breathing tube yesterday and she came off CPAP today.

She regained consciousness today and is doing well except for awful withdrawal symptoms from all the meds. For that reason we have decided to wait until tomorrow to bring DD1 to see her. She is having lots of shaking and some convulsions plus she is quite irritable and really would rather be left alone, preferably being cuddled by me.

I've just left her with DH so I can get something to eat as I think we are in for a long night. We'll do shifts if necessary.

I can't even begin to describe how wonderful it feels to have her back. They are even talking of discharging her from PICU tomorrow. We'll be in hospital for a little while yet but the consultant said today that he wants to give her a chance to get over all of this & then bring her back to see him in 6 weeks to do more investigative work. We may have to go ahead with the barium swallow this week but we'll see.

Thanks for all of the advice. I will let you know how the twin reunion goes - I can't wait!

jennyroper Tue 07-Jul-09 21:52:33

yay! that's such fantastic news you must be beyond thrilled. Everyone will be so pleased to read your news

TheProvincialLady Wed 08-Jul-09 15:01:11

Oh I am delighted to hear thissmile

twinmam Wed 08-Jul-09 15:14:25

DD2's withdrawal symptoms have been truly horrendous today but we decided to go ahead with the twin reunion anyway as they've been apart for 2 weeks.

It was wonderful and DD2 seemed instantly calmer and happier. They were delighted to see on another and kissed and cuddled. DD1 kept stroking DD2 and saying 'awww'. She also tried to pull her nasal gastric tube out but we managed to prevent that!

It was lovely to see them together and we'll step up the visiting time and frequency each day. DD2 got very tired today and it all became too much for her quite quickly. Likewise DD1 seemed to get upset after a little while and we don't want her to be distressed by the shaking and hallucinating DD2 is going through: a very tough call.

DD2's breathing is fantastic and all the drs are really pleased, so much so that they are talking of discharging us next week once the withdrawal has eased and then bringing her back as an outpatient for further investgations.

Littlefish Wed 08-Jul-09 21:25:41

Great news that the reunion went well. It sounds like you've done exactly the right thing smile. I'm glad dd2's breathing is so much improved.

Frizbe Wed 08-Jul-09 21:30:15

grin that's great news that dd2 is on the mend and the girls were very happy to see each other. I hope she's better soon smile

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