Advice needed after baby was sedated and ventilated for 1 week

[lindaMckay]

My 17 month old was hospitalised after having breathing difficulties. He had to be put on a ventilator and sedated for 7 days. He was exhubated on Friday and we had a weekend of withdrawal symptoms. Thankfully we got him home on Monday. He is eating and drinking well though is unable to hold his own bottle. Our main worries are that developmentally he seems to have gone backwards. He is hardly crawling, he does not seem to be able to use his hands properly and things he used to love like climbing he has no interest in. He wants to spend all his time gettung cuddles and kissing us. We are trying to sit with him on the floor and play with his toys but not much interest there either. He is also terrified of noises. I just wondered is anyone elses had a similar experience to ours and how long it took for their baby to get back to normal

[beautifulgirls]

DD was on a ventilator for 9 days when she was 19 months. She was still in hospital for a further 12 days after this however but it took the best part of 7-10 days before she started to get any energy back and be interested in her surroundings. She was much happier just to sit/lie and stare at the tv or us. Once she was more with it she liked small toys she could hold although in her case her mobility was restricted for other reasons too for a while after her issues. Fast forward more than a year and she picked up where she left off and continued to do well and develop perhaps a tad later for milestones than she had been but then she took a huge backstep from life for well over 3 months when she was ill.

It sounds like your son has been through a lot and been very poorly so it will take him some time to get his energy levels back on track and get back into a routine with things again. If you are worried then still worth chatting to the paediatricians about him and if needs be letting them check him anyway.

[lindaMckay]

Thank you. We were not told to expect this so are totally demented. I was prepared to expect him to be quite clingy but was not prepared for him not to be able to use his hands. He is normally an active wee man. Loves climbing the stairs and climbing up a chair to look out the window and watch the world go by. Trying to be patient and give him the time he needs to heal but its so tough to not see his wee personality shine through.

He was a premmie (31 weeks) and we had no issues with him at that stage. He just needed to stay in the hospital to grow.

Thanks again for your comment. I really appreciate it

[Northernlurkerisbehindyouboo]

ICU is an enormously traumatic experience for adults nevermind little ones. Even when people seem out of it they are still disturbed by the noise and the intensity of it all. It's perfectly normal for adults to take some time to adjust after an ICU stay and I'm sure the same is true of children. Have you rung the ward he was on? You could do with an experienced nurse to chat through this with I think. Or you could try your GP? I imagine you'll get some follow up from somewhere too. It's still very early days though. Keep cuddling, if he's well enough take him out and about to see things he likes - diggers? trains? animals? and I think he'll bounce back soon enough. Quicker than you would. If you'd been extubated on Friday I reckon you'd still be in a ward eating very small amounts of ice cream and wimpering slightly! I know I would be.

[combinearvester]

Linda I agree with what others say about ICU and the effects of trauma.

I know people with infants who have recovered from long term or serious illnesses who briefly slowed down in their development / showed little interest in day to day activities for a while. The fear and need for constant physical reassurance is absolutely understandable.

However I would take him to the doctor if you genuinely think he is no longer able to use his hands or no longer able (rather than unwilling)to do physical things he could do before.

[lindaMckay]

Yes we did ring the ward but the person we spoke to was a bit vague. I intend to speak with his paediatrician tomorrow. He did say we could ring him anytime. This was his 3rd admission in 5 weeks of the same thing with each one getting worse. Wee dude had been through so much.

We have taken him out a little but not too much yet. Cuddles are not a problem. He's a naturally cuddly baby and even more so right now so he can have as many as he wants. The house can get cleaned when hes better

[AnotherCerealNameChanger]

Our dc was nicu and we've since been back in many times, the one time we were in high dependency she took weeks and weeks before she was back to where she started. She was about ten months I think on that occasions and cried for six weeks solid.

Go at his pace. Rope in family and friends to help. Lots of his favourite food, milk, cuddles, baby toys can be less intensive and just let him get better. I would also advise possibly speaking to your local portage who can sometimes come up with ways to encourage him if he isn't moving as he was within a timeframe set by your Paed. And stay in touch with that Paed, not all will listen at short notice.

[combinearvester]

Linda how is he doing now?

[lindaMckay]

Just logged on to say he is doing great. On Saturday he started to do things like climb the stairs. Last night he was jumping on his bouncy zebra for the first time and tonight I was allowed to chase him with him crawling and giggling. This post really helped to set our minds at rest a bit and allow Alex the time to heal. He still has a few wee issues but nothing we can't deal with. Loving having my happy chappy back. Thank you all