Swallowing difficulties after long stay in ICU including incubation and tracheostomy

[lowek]

Hi,

My dad was taken very poorly just after Christmas and after 39 days in ICU he was moved to a ward. My dads tracheostomy was removed on the 3rd of Feb and moved to a ward on the 5th. He had an exam to show that he has difficulties swallowing whilst in ICU and was told the exercises to do to build his muscle up. 2 days later in the ward the nutritionist came to see him about having a PEG fitted. Whilst the dietitian from ICU came to see him she mentioned that the ICU doctors have overruled this for now as it’s too soon. The same nutritionist came to see him on Monday to once again talk about the PEG and again with me yesterday (Tuesday) I raised the point of being re examined to see if progress has been made and she said she will talk to SALT but it’s highly unlikely they will as it’s not been enough time. Which answers my own question “why are they wanting to fit a PEG when its just been a week and a bit since his tracheostomy was removed?” I personally believe they want the bed. I have emailed PALS asking to meet with them about this issue but I was wondering if anyone else has experienced a similar experience as us.

Thank you!

[VickyC1982]

A PEG seems to be a pretty final solution? I know I wasn’t allowed to have my NG tube out until I could eat properly. Does he still have the NG in? X

[lowek in reply to VickyC1982]

Hi Vicky,

He does still have the NG tube in, and it has been changed since he first had it fitted. They say he cannot be discharged with the NG tube which makes me think by fitting a PEG he will be able to be discharged. They also said it’s a long term solution but also he can say no to having it and risk eating and drinking. He has being doing his throat exercises, which has made him sore and the nutritionist even said that’s good because they’ve not been worked for x amount of time but then still continues to talk about the PEG. I just believe a week is not long enough to say they have gave it sufficient time before fitting the PEG X

[VickyC1982 in reply to lowek]

I would say no to the PEG if your dad doesn’t want it. I would try and give him some more time to get his swallow back before resorting to that. Speak to PALS definitely, he is going to need time to recover given the massive physical and emotional onslaught he’s been through so it’s tough shit about him taking a bed 🤷🏼‍♀️

[lowek in reply to VickyC1982]

Thank you so much for replying! It’s exactly how I feel and I didn’t know if I was overreacting! I emailed PALS last night and they got back to me this morning. They have spoken to the Ward Sister and she said that there is ongoing discussions that I will be included with. I explained on the phone that I’ve had doctors telling me different things from day one and the day before the tracheostomy was fitted and he was weaned of the sedation I was told by a certain doctor that he may not be able to wake up and if he did may not be able to walk and talk and yesterday I saw him walk stairs unaided so I know he’s got the strength and ability to do anything! We gave him time to fight in ICU so give him so time to build his strength! They could have done the exam quicker than it’s taken me to probably type this message on my break!🙄🙈

[VickyC1982 in reply to lowek]

I think it’s so hard to predict how people will be when they come round from the coma & whether they will be able to return to the same level of function they were at before. I know three experienced consultants expected me to die and I was told it would be a year before I’m back to normal. Instead I’m still alive and have surprised everyone with my fast recovery.

It’s a shock going to the normal ward from ITU. You are treated very differently and there seems to be a lot of emphasis on getting you out. I discharged myself after 24 hours on a normal ward, I knew I’d do better at home. I would definitely persevere with letting him have more time plus they can’t do anything without his consent. They should be working with him to ensure he gets the best level of ‘normal’ function back as possible. He’s had a trachy and hasn’t swallowed in weeks so obviously the muscles are going to take time to recover 🙄 xx

[Videodragons in reply to VickyC1982]

Absolutely! Mirrors my experience too.

[lowek in reply to Videodragons]

I think it’s disgusting!

[lowek in reply to VickyC1982]

I spoke to the SALT team who expects and two month recovery until he gets his swallowing back! Which I can accept! I just think they are rushing! And I am so not impressed! I’ve had to leave work early today because the Dr wanted to speak to me yesterday but never called, I just got here and they said “we can’t promise you see her” also they said he be out after a couple of days of having the PEG which proves my point! X

[VickyC1982 in reply to lowek]

He needs rehab not a PEG and a swift discharge! Stand your ground x

[lowek in reply to VickyC1982]

My thoughts exactly! I’ve just had to do his feed tonight because “I have to learn!” I asked about community nurses and was pretty much shut down because I live with him! His feed is 15hours and I am meant to flush him after? It’s not like I’ve got a job or anything! I just feel devastated for him and now selfish for thinking that all they keep saying is he have more of a life with a PEG than he would be waiting in hospital for he’s strength to come back but yet what happens to my life? They are convinced it be short term but short term to them is another 2 months+ of me not having a break, life anything. This is day 47 of him being hospitalised and I’ve not let a day go by where I’m not up there, where I’ve had a decent sleep! Juggling that and work is something I’ve come to accept but I just can’t get past this as I believe it’s not for his own good but just because they want him discharged! 😩 X

[VickyC1982 in reply to lowek]

I’m sure you are still entitled to some kind of help at home? I would ask for a face to face meeting with PALS, the doctors and social services. If you don’t get any joy, write to the chief executive x

[lonleyhelpless in reply to lowek]

Hey, how did it go with your Dad? I hope it went pretty well for you .. please update me on life after tracheostomy removed. Send you lots of love xxx

[lowek in reply to lonleyhelpless]

Hi!

To cut a long story short, Dad went ahead with the PEG. I went to PALS twice (who were really helpful!) and spoke to doctors, nurses and consultants who all agreed with me yet could not “overrule” the SALT team. We was told he would have to be off the blood thinning medication for 7 days, the next day this changed to 2. Considering he has PE, I really was not impressed. So to be frank, they really just wanted the bed. Dad was discharged 2 days later after 59 days in hospital and has come on amazing. We received a letter from the community SALT team stating his videofluoroscopy would take place on the 30th of this month, which would have been 8/9 weeks since his first one. I got in touch with them and said that this is not what was agreed with the SALT team on the ward and that it would just be 6 weeks from his first exam. His consultant was lovely and understood exactly what we was saying and said that there is no way we should have been told that and she understands what the wards are like and agreed with me (FINALLY!)

Luckily there was cancellations for the 23rd of March so we was able to have the exam there, two days later Dad got the all clear to eat and drink normally again! He got choked up! And is over the moon! We was extremely lucky to have the exam that day as now we are in lockdown.

He is taking his time with food etc but they said he will get used to it again.

His tracheostomy scar has healed really well and he is slowly building his strength up with a daily walk (I now have him on full house arrest!)

Happy to help with any questions you may have xxxxc

[Twoblu in reply to VickyC1982]

We were told my brother had to have the Ng tube taken out as they are not good to keep in.Ww were also told he had to have a peg fitted because where they were shipping him out to would not accept him.