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

[gigglewitch]

huge hugs to you. Hang in there. I really feel for you x

[IkeaCatalogue]

Oh sweetheart what a nightmare

Sending love and strength

Advice - well I've not been in your exact sitaution but:

Be careful to eat regularly, keep your strength up

Try to sleep, difficult I know

Accept that your 'well' DD will have to come second at the moment

Also ask for help at home, washing/ironing/filling the freezer

Good luck

[bamboostalks]

Hope all goes well for your dd. It sounds so difficult, will say a small prayer for you all.

[ilovemydogandmrobama]

Your post made me cry

Not as serious as your DD, but understand trying to keep it together.

Just concentrate on your ill DD. Let other people help. Let them take care of DD1 and with logistics, such as taking you back and forth to hospital, getting you meals, bringing you things, so you can be there for your DD2.

You return to normal life once your DD is better and discharged. In the meantime, you live on Planet Hospital.

[GhostOfPsychomum5]

no advice with regards to the ICU, but I have had to juggle very poorly children in hospital and the others at home, and the transfer of hospitals, and the being away from the 'well' ones (well in health, not quite so in emotion with missing me/their sibling).

tis so hard, but talking about it can help, even if just on here while you stay strong in RL.

I always found the adreniline kept me going until they got home and then I would semi-collapse as it all caught up with me..........talking and admitting it is hard might aleviate some of that for you.

I hope she starts responding soon....much sympathy.

[overthemill]

oh poor you (all of you). yes similar and the adrenaline does keep you going. can the dh help out? can any relatives/good friends help out? Everbody will be desparate for something they can do, you know. what about granny or someone being with little one in hosp for a night and you getting home and doing bedtime as normal for the tiny one?

there may be a good neighbour scheme where you live who can help out with practical stuff like shopping cleaning

what about a webcam? what about a series of postcards from you to be read out to little one? what about recording a staory tape for bedtimes (for either one)?

i'll try to think of other things
but dont forget to eat and drink and try to get some down time for yourself - our hosp is opposite ahuge sainsburys and i would walk to the cafe for abreak...

[overthemill]

re read post - sorry - i think it is the replacement things - tapes, postcards, etc special book and just take every single bit of help you can get.
i was in hosp for 3 months as a young child and my parents had 3 other young ones. it tore her heart rushing between us all and she had no local help. i never realsied how hard it must have been until i had my kids - but she made each of us feel special as i am sure you are doing too.

[magso]

Oh Twinmam, you must be exhausted! Your well child is surrounded by family and well cared for - do not torture yourself! I hope the news will be good soon and you all well and home.
Remember to look after yourself well both now and once home (hospital stays with sick dc always leave me exhausted and rundown). Will be thinking of you all. (hugs)

[cariboo]

Big hugs! i've been through a similar situation several times before with both ds & dd - both dc have been in critical condition several times with various ailments and it's the absolute worst stress a mum can go through. Try to get as much rest as you can & recruit dh, all rels, all friends, neighbors, etc to allow you to do so. Sleep/rest/quiet at this time is more important than food whenever you can grab it. Do NOT give in to guilt - it drains you & helps no-one! Thinking of you xxx

[OhYouBadBadKitten]

Nothing sensible to add. Just wanted to send you lots of best wishes and hugs.

[FabBakerGirlIsBack]

I can empathise with having to hand over your child to the hospital but I would usually be at home while DH was at hospital as invariably was breast feeding a baby so had to be at home with the baby.

Make sure you keep up your fluids and try and eat.

Don't try and do to much with your DD at home. She just wants mum there.

I hope you are all back together very soon.

[Lizzylou]

Goodness, what an ordeal for all of you.

Really hope that your DD2 gets better soon and that you are all home together safe and well.

Look after yourself and trust that your Dh and relatives are looking after your DD1.
Your poor DD2, she has been through the mill, hasn't she?

Like ilovemydogandmrobama, your OP has made me cry, because I can feel from your words how helpless and torn you must be feeling, and I have never had to spend more than a day in casualty with my two boys.

Take care x

[PlumBumMum]

OMG poor you as everyone else has said make sure you keep eating it easy to forget when sitting in the hospital, and you need your strength

Hope your dd gets well soon, and sounds harsh but try not to worry too much about your other dd as she will be getting loads of attention

[Rindercella]

Just wishing you and your DD the very best twinmam I hope she is back home very soon.

[MiniMarmite]

Just a note to wish you well, like others your OP made me cry.

It sounds like you and your family are managing everything really well but it must be so hard for you all.

Will be thinking of you x

[MamaHobgoblin]

Oh god, how awful for you. You must feel like you've been running uphill for days now. And your post made me sob - DS is the same age and I can't imagine having to go through all that.

UnMN-y hugs and I really hope she comes home soon. She won't remember any of this, and neither will DD1, thankfully.

[FlorenceAndtheWashingMachine]

Hi Twinmam,

Yes I have had similar problems (although my DD1 is five years older than DD2). DD2 was in PICU for six weeks after birth and has since spent a lot of time in and out of hospital. One of her problems is a floppy windpipe like your DD and she also has malformed tubes in her lungs so finds it hard to shift infections. However, my DD's health has improved enormously with age and the right meds and I hope that your DD's will too.

I am so sorry that you are going through this. My DD2 stayed at home with my DH and that was very hard. Is there any family accomodation available at the hospital? My DD1 came to stay most weekends with me with DH and that really helped us to keep some normality going. Ask the staff to point you in the right direction as there may be a Ronald MCDonald or Sick Children's Trust home on site.

I hope that your DD recovers soon.

Lots of love.

[maltesers]

I know exactly what you are going throu'.. My DS at the same age was in intensive care with a breathing tube in his airway. He was 14 months and diagnosed with severe subglottic stenosis. Basically a very narrow airway. His was sedated the same for 5 days but after all treatment they couldnt take out the tube without performing a Tracheotomy to create an artificial airway. He was in hospital for 6 weeks and i had 2 older kids back at home at school to care for. Daytime with little DS then back home at night for big kids. He then (7 months later) went to G.O.S. for tracheal reconstruction. He is 8 now and very well. Hy heart goes out to you and i am trying not to cry cos reading you post just brings it all back to me. The doctors are very good as you know and will take good care of her for you. Although its so hard for DD right now with all the hospitalisation she will forget it all in time. My DS cannt remember any of it. But my heart ached after they had put the Trachy in his throat as he had no voice . I wish you all the luck in the world... and hope you little DD is ok. Its very worrying and you cant eat, sleep or think straight. Keep us all posted and stay strong. You are going through HELL , just keep going till you come out the other side. The staff know what they are doing and have seen it all b4. Just give your DD (as you will) lots of love when she comes round. They hallucinate a bit when coming round but its soon over and she will be awake. Your other DD will be fine with family back up and so forth. HUgs Hugs XX

[maltesers]

Same here... my DS had a breathing tube in his throat, that was the size of a Neo-Natals.

[ilovemydogandmrobama]

GOS = Great Ormond Street -- for those in the know

[Sunshine78]

I have been in your position and it is hard. I was lucky when we got transfered they allowed DC1 (well one) to visit and let me play with him in the wards play room - if I was needed in with my dd the play specialist would look after him - never fazed him the condition his dd was in (think he felt reassured at seeing her) we have always been honest with him (even if have simplified it).

I also know how hard it is to hold your baby down while they do bloods etc. My dd has been having bloods done on a regluar baisis since she was 10months now 2.9. No mum wants to put there dc through unpleasent things just try to stay strong and cry when on own.

As others have said and i know you dont want to eat but do - your dc needs you to be mentally/phsyically strong.

Sending you a big hugx

[twinmam]

Wow - just jumped back on here and overwhelmed by the messages of support and such kindness. Very un-mumsnetty indeed It really is helping me. Thank you. Am now going to go and stop DD1 putting herself in hospital as she is showing off for mummy! Thanks everyone.

[OhYouBadBadKitten]

How is your dd doing today? And how are you?

[maltesers]

How is you little DD in hospital today ??? Best wishes XX

[1dilemma]

Just to echo it is completely normal to feel that you can't leave your dd or something will go wrong! (or at least it was for me and the lady in the next room when our dcs were in hospital) was an illogical belief that was very difficult to shake and very exhausting to live with since we were talking about hourly blood tests!

It was my PFB in hospital so I can't really advise about your oldest except to say my tendency would be to concentrate on the child in hospital but if possible can your oldest come up to the hospital sometimes so you can go to the local swings or Macdonalds/hospital canteen sometimes (nutritional value of food is not important in these circs and you can always bring her something from home)