A Bad Day :(

[AJH1709]

So yesterday was a really bad day. I spent most of it crying. Dad snapped at me and told me to shut up and said I interfere and talk to the doctors too much. I know its usual for patients to be snappy and moody but it was just the final straw for me. After worrying and putting my life on hold for so long this is the thanks I get. At least now he is near to home I could walk out and drove and got my mum to deal with him. We were saying I guess we are used to the doctors talking to us over him (while he was sedated) and we felt it was down to us to ask the questions but now it must be frustrating for him. Lesson learnt I shall butt out from now on. Latest tests yesterday showed his left vocal chord is paralysed and he can't swallow - therefore can't have normal food. Has anyone else experienced this after intubation and tracheotomy? Feel really down right now

[kerr28]

Hi

Sorry you had a bad day yesterday with your dad.

I also had a bad and good day yesterday with my close friend Mark who had come out of a 3 week coma 2 days ago today because one minute he was smiling and the next minute he was physically hitting out at me and his wife for no reason what so ever. This upset me and Marks wife a lot because we were also both in tears.

Also Mark has problems swallowing solid food but can swallow liquid food and tests have shown earlier today that his left vocal chord is paralyzed (same one as your dad) and doctors have said it is down to the intubation and hopefully should improve in time.

Going to see Mark tomorrow afternoon.

Hope this information has been helpful.

Thinking of you, your dad and family always.

Laura

[AJH1709 in reply to kerr28]

Hiya - wow they started feeding him very quickly after waking him up - that's good. it seems strange he can have liquids - we were told if the chord doesn't close the airway it is a massive risk that something will go down to the lungs. The impression we got when doctors spoke to us was that it was unlikely to improve but later the sister did say to my mum (who was obviously very upset) that never eating again was the worse case scenario - so yet again another waiting game :/

Hoping Mark continues to improve - sounds like he is doing really well x

[kerr28 in reply to AJH1709]

Hi AJH1709

Thanks

Sorry I forgot to mention that Mark is drinking protein milkshakes though a straw and either I, his wife or a nurse helps him by holding the cup and watches him to make sure that he does not choke, which is a sign that the liquid food has gone down into the lungs. Thankfully this has not happen yet.

He did not start trying to eat until Thursday morning (the day after he came round) and that was when the doctors released that he had the problem swallowing solid foods.

They will be moving Mark to a ward tomorrow morning or afternoon.

Still thinking of you, your dad and family always.

Laura

[Brittxoxo]

Im sorry to hear that. My mother just got her tube taken out, and shes very moody and delirious. Shes been telling me, im not helping her. Telling me to shut up, rolling her eyes at me. And i feel so bad because ive been there with her every single day from night to morning and she wakes up and talks to me like this . It sucks

She as well is having trouble paralyzed. But before you get too sad , see of you can get a second opinion.

Have Faith, everything will be okay xoxo

[AJH1709 in reply to Brittxoxo]

Thank you - like you just found it incredibly hurtful that he could speak to me like that when we have been through so much too. I know its not really him but once I started crying I just couldn't stop xxx

[Teniseelam]

Hi, I was in ICU in April of this year. Double pneumonia, Sepsis, ARDS and probably had a silent heart attack while I was in ICU, also intubated and ended up with a paralyzed vocal cord. I had a trach put in in April also. It was pure hell not being able to drink anything I was fed through a nasal feeding tube at first and in May a PEG feeding tube was put in (inserted through the abdominal wall). Most probably swallowing studies will be done. You drink little bits of different types of liquids or soft foods with a contrast medium in it and they watch and record the X-ray images. The big danger is aspiration pneumonia. I started off with thickened liquids; you put this gelatin powder in the drink to make to the thickness they instruct you. My experience was the colder the better and I finally found a vitamin drink that tasted good to me. It is very hard to keep yourself properly hydrated on thickened liquids. By the end of May I graduated to soft, puréed foods then crumbled food and worked my way up to regular food by mid June, but was still on thickened liquids. It took me forever to eat because I had to really chew a lot. I also was not able to eat much,got full faster. Which was good for me because I need to lose weight.A speech pathologist/therapist and a special ENT doctor helps the patient with this. It can take up to a year for the vocal cord to heal. Swallow studies will be done periodically. They may suggest an injection of a substance(there a few different ones that the doctors use), to help plump up the vocal cord to aid in swallowing and speaking. One of the most unpleasant experiences I have ever had; and that was the numbing process the injection was fine. But it really did help! They can do that treatment up to 3 times which takes you to a year(every 3 months). The vocal cord can completely heal on its own. Mine has not so far but my body is compensating. I was unable to get another injection due to scar tissue but the doctor thinks that other muscles nearby have strengthened to help prop up the vocal cord. If after a year the vocal cord has not healed and your dad is not happy with the way he sounds or has other problems there is a surgery where they put an implant in the vocal cord to keep it in a position to help with swallowing and speaking. I hope this was helpful. You, your mom and most of all your dad have been through a lot of physical, emotional and psychological trauma that will take time to heal from. Your dad lost weeks of his life and has no idea what happened to him during that time. If he asks questions about when he was in the coma answer him if you can. Or maybe write it down in a journal. The ICU where I was is doing that now for the patients I wish they had done it when I was there. My family doesn't want to talk too much about it. Sometimes I get bits of information but they don't understand why I want or need to know. I reallly don't either but I do want to know. The drugs give you really weird dreams/hallucinations. I think they are mixtures of reality and your brain trying to understand what is happening. Will be praying for your family!

[Vita81068]

So sorry. Each day is a new day! Hope you have a better one tomorrow!