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Stuck in hospital.. who knows how long :(
Hey all,
Been a while since I’ve been around, but was hoping for a little support here as my partner has been hospitalised for an unknown length of time for the first time in the whole time I’ve known him (and I think the first time almost in his life!!)..
Basically started with a non-descript chest infection bug kinda thing (you all know what I mean!!) just over a week ago, which has taken him to the doctor, home, hospital for 4 hours, home, hospital for 12 hours, home, ambulances and so on.. and now a week later the non-descript chest infection bug kinda thing has had him in hospital since about 330am Sunday morning. (bear in mind, it is winter here and we’re about 10 hours ahead).
THEN I ended up with the non-descript chest infection bug kinda thing just before he went into hospital so that ruled me out of going to the hospital to see him as soon as I found out where he was.. and the non-descript chest infection bug kinda thing is NOT pleasant.. nausea (and in my case not just nausea), cough, inflamed tonsils and pharynx and great difficulty swallowing, increased heart rate, fever of 39 C, and more crazy fun like that.
Now his has turned to pneumonia, so he is stuck in hospital and tonight for the first time ever I witnessed him having a panic attack (he is not normally panicked like that) – but he was saying he felt claustrophobic and tied down because he couldn’t get out of the bed and because they have a bipap on him to keep his oxygen up.
Part of the problem as I see it is that at home he has total control over how things are done – the temperature of his water, the choice of food, the timing of things (like when he has his medication) – but in hospital they do not listen to any of that. He is having his medication at entirely wrong times (but the doctor has charted that, we can’t change it chime the nurses), not being allowed to take any supplements that he is usually on (but he can’t have those, if he drinks water it might end up in his lungs – yes, all well and good, I get that, but if he doesn’t have a balanced diet and his supplements which he is hardly going to get in here, his general condition is going to get worse!!).
Well then he had this panic attack, his oxygen crashed from 86% to 79% and he started babbling incoherently.. had to put the mask on him to bring his oxygen back up, but I had been in the middle of cleaning his teeth.. so he still had a mouth full of toothpaste.. then of course he wanted to rinse his mouth out, nurses wouldn’t come to help out..we must leave his mask on (so apparently it’s ok to aspirate toothpaste!!).
Sorry about the rant.. I am just SO frustrated that these nurses don’t seem to be able to understand that he is feeling really out of control and also that they don’t seem to genuinely understand his disability (things like asking him to lift his arm up.. really?? He CAN’T!!) and they don’t seem to get why I am hanging around pretty much all of visiting hours, to do things for him that they just don’t have time to do (like comb his hair and try to make him feel HUMAN!!)
Do I care too much?
Re: Stuck in hospital.. who knows how long :(You poor things, you are going through hell.
It is so difficult adjusting to any new surrounding, time, people and eeuipment that do not fall into the tried, tested and working schedule of home. I can imagine that an element of the panic attack and general anxiety is fear of what is happening, fear of not knowing when things will improve and fear of long term out come, with a side order of shock for god measure.
Chesty things do take a long time to improve, recover from, and recover from the recovering from for us MD-ers … hang in there. I always seem to hit a weepy depressive slump just before things start to work out. The medical staff probably appreciate your worries and concerns but maybe do not realise the importance of them re the diet and so forth.
I hope things start to improve quickly and you both make a strong steady recovery back to your usual normal.
Rant away, we haven’t broken the web … yet
I'm always the animal, my body's the cage
I blog about nothingness www.amgroves.com
Re: Stuck in hospital.. who knows how long :(I can understand exactly what you mean. I think the most frustrating thing for me, when I have been poorly and in hospital is that I have difficulty communicating what I am feeling or what I need – it can be difficult to talk and depending on masks almost impossible and if you add secretions into the equation it is also dangerous. My carers can tell what I need by a facial expression or gesture but nursing staff do not know all the little things, the tweeks that make life a little bit more tolerable when you are so ill – it is a bit more independence lost but you lack the energy to do anything about it.
It must be frustrating for you too as you are watching your partner’s distress but having you there will be a great comfort. You clearly care a great deal, it is not too much but rather a case of the nursing staff not understanding they need to care a bit more!
I hope things improve, take care of yourself too!
A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adams
Re: Stuck in hospital.. who knows how long :(What a difficult time you are both having. Things just do not seem fair sometimes.
Really hope things improve quickly. Thanks for finding time to post.
Two weeks ago I was in hospital and you are so right about the responses you get. Nurses in
particular will stick to their rigid training which will not encompass rarer condtions fully. Then when
you are getting through, another shift will take over with just a glance at the notes left
behind.Your presence will be a great factor and hopefully help to put this all behind you rapidly.
"Even if you are not paranoid, it does not mean they are not out to get you!".
Re: Stuck in hospital.. who knows how long :(Thanks all for taking the time to respond to my rant..
I took the time to write a note here because I know you all understand.. even his parents aren’t as clued up on what can and does happen with him, as I go to all his appointments because I get what the doctors are talking about, so I don’t think his parents have a realistic idea of his needs.
Today it got worse though.. he’s now been moved from High Dependency Unit (HDU) to Intensive Care (ICU) after he passed out for one or both of two reasons..
Basically I was awoken this morning by a phone call from one of the respiratory failure doctors, asking me to come in ASAP for a case conference with his dad, myself, my partner, and doctors, which included (as I found out when I got to the hospital) a palliative care registrar and palliative care doctor. They were very quick to say that palliative care is not just for the dying, but could also be used for keeping someone who is ill comfortable, easing his anxiety and feeling of breathlessness. So it was suggested that he could use valium and morphine just to calm him down..
Well later in the day I had him up in his own commode chair (yes, more comfortable than the hospital commode!! as he’s 6ft something, rather than the 5ft that the commodes are designed for.. another creature comfort that the nurses were concerned about me bringing in for him).. and he was talking like normal, then he became very anxious, so the nurse gave him a tiny dose of morphine.
Eventually he started losing consciousness, would babble incoherently, then he became unconsciousness. I could not wake him for love or money.. Called the nurse, cleaned him up, threw him back into bed, bipap back on (he was only on oxygen when in commode). Still wouldn’t come around.
So suddenly 20 doctors appear in the room.. all sorts. I insisted on staying, so that I knew what was happening and to comfort him if he did come around.
Tried two roads.. reverse the morphine and lift oxygen/lower CO2.. Don’t know exactly which was the problem.. after 45 minutes he finally came around, but by this stage, ICU doctor is discussing intubating, then possibility of her not wanting to intubate because it wouldn’t achieve anything and that they would make him comfortable and let him “GO PEACEFULLY” – I told her that he was conscious again and we weren’t discussing a 36 year old man dying!!
So now he is in ICU, and again, who knows how long..
But thank you for your support. I very much appreciate it. I know, and the palliative care registrar told me how important it is that I am there for him as much as I can be.. I just have to convince my work
Re: Stuck in hospital.. who knows how long :(You are doing all the right things and in all the right ways.
I truly hope that this will make the difference.
Glad there are so many medical people too.
"Even if you are not paranoid, it does not mean they are not out to get you!".
Re: Stuck in hospital.. who knows how long :(Thanks Fox
Well we’re still in ICU, still on 24 hour bipap, but today we had a visit from his normal respiratory physios from another public hospital across town (think an hour’s drive) with a special machine to help him cough up the guck from his lungs… I’ve never been so happy to see them in my life!! Lovely girls they are too.. trained the staff at this hospital how to use the machine, gave it a go, and coughed up more than I could ever have expected him to cough up. It was amazing!! And he was really happy with it too
Also had a visit from the chaplain and a priest who prayed for us (his family, he and I), then later he and I had a meeting alone with social worker who was happy to help me out with a letter for my employer so that I can be there as long as necessary with him. I also intimated with her that my partner and I want to marry but holding us back is only his inability to pay for an engagement ring, which he agreed with, and asked her what we would need to do to arrange a wedding in hospital if things did look bad as this is what we would both like. And I think would be my greatest regret if I did lose him.
Also had unpleasant meeting with another doctor who basically implied that the end was near and we should start thinking about intubation, but my partner’s father and I both said we would not be discussing that until we thought it necessary to discuss.
The one thing I will say I am grateful for is the knowledge and the brilliance of the public health system here. I don’t know how the NHS works in the UK, but our health system here is amazing, and world class. The staff are (generally) amazing, the facilities in ICU are great, the social support is wonderful, and I don’t think we could ask much better.
Thanks all for your ongoing support.. sorry to unload but I think this is one of the only places where I feel I am understood.
Re: Stuck in hospital.. who knows how long :(We are glad you feel you can unload! I am so pleaded to hear the Cough Assist is being used – they are incredible machines and can make such a difference. If I hadn’t been able to use one when I had fluid in my lungs I would have gone downhill fast, you just get too tired to cough in the end.
It sounds like positive steps are being made at last.
Take care
A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adams
Re: Stuck in hospital.. who knows how long :(Glad you are getting a result and some relief from the cough asssist and that so
many aspects of your public health system are coming together in your hour of need.You are so right that a NHS is so important at such vital times. We reserve the right to
unload on any that try to take any part of ours away.Good that social workers and chaplains are also adding their all to ease your mental flux and help
you concentrate on your partner. Good luck for the next few hours."Even if you are not paranoid, it does not mean they are not out to get you!".
Re: Stuck in hospital.. who knows how long :(Hi Princess. How are things today ?. I saw a post on facebook so thought I would check on here. I was shocked and sad to read what has been happening. I send you both my best wishes. I have said it before and I will say it again. You are an inspiration and a ray of light. Right now your other half needs your light like no other time in his life. He sounds strong, he is a fighter, and with you in his corner the odds are in his favour. Doctors only know so much, nurses do seem to be more helpful and understanding at times, however I agree they do generally stick to what they know. I am not the best person to talk about hospitals, I have only been in three times in my life. I hate hospitals, I don’t like being told what to do, I always end up pulling my I.V drip out because it annoys me. The food sucks and they make me go outside to smoke. I avoid hospital unless I think I am dying, so can’t really offer much advice on that.
I will say this….. Get Married, either wait until he comes out or if you feel that now is the time, then go for it. Honestly if the worst was to happen, and I hope it doesn’t. you would have made him a very happy man, . But when he comes out, you will have a whole new chapter of your life to enjoy. Do it, it will be the best thing either of you have ever done.
…………………………………………………………
Stay strong princess, oh for your love you must be brave.
Keep two hearts beating with loves eternal power as one.
Don’t cry angel, shine your ray of light on these dark days.
your energy gives a life like the earth draws from the sun.Incredible power lifting the mind and the soul
Enter the future, where two parts are a whole
…………………………………………………………..Good Luck and Best wishes.
Karl
Re: Stuck in hospital.. who knows how long :(Oh my God Karl, that was beautiful.
You really are a poet.
That gave me total shivers down my spine.. I am going to share that with him tomorrow when I see him, if you don’t mind. Generally the first hour or so I am there, we are alone, before his family arrive, and I think that is the most beautiful thing I have heard.
I am so appreciative of everyone’s support. It means the world to me.
He’s still in ICU.. not showing any signs of being moved out, but he improves with baby steps each day. I will take what he said to me this morning when I turned up into my heart and remember it forever “I’m so lucky to have you” – and he was OFF the mask!! (But went back on at about midday).
Thanks again to you all
Re: Stuck in hospital.. who knows how long :(Sending hugs and if you don’t mind I will pray for all of you each day. What an awful time for you all.
I’ve only ever been in hospital a 4-5 times overnight and never for a chest infection – but I know exactly what you mean about not having the familiar and easier ways of doing things. I hope they are all really taking good care of you both. I guess it’s difficult with balancing oxygen versus morphine versus BIPAP etc. I can’t take oxygen as it lowers my breathing and actually increases my CO2 – but then if your lungs are gunked up then O2 is a good thing normally. I always worry about the balance of blood gases – I only have to have my BIPAP input set to a slightly higher breathing rate or turn up the pressure by ‘1’ notch and I can go all confused and feel drunk and about to pass out! It seems such a fine balance.
SO glad you have a cough assist – I’ve read medical papers that say some people have had their lives saved by it – cough up the gunk and the lungs can start to shift the gasses in the right place. I also heard that humidity is really important on the BIPAP machines for improving lung function if you have pneumonia . I do hope he starts to feel better and you can stay strong when dr’s etc are thinking about giving up.
I hope you can get married too – how amazing would that be xx
Thinking of you x Louise
Re: Stuck in hospital.. who knows how long :(Thanks Louise, no I don’t mind you praying for us at all.. in fact, the more the better!! We really appreciate it
I have asked many of my friends to pray for us (or if they’re not believers in prayer, at least to send healing vibes!!).. his aunty (a nun) and her sisterhood are praying for us, as are the rest of his family.
As for the blood gases, yes, luckily the respiratory doctors seem to understand, as do most of the ICU staff, that there is only so much oxygen you can have before CO2 starts creeping up. At one stage, his oxygen saturation was 78 and his CO2 was 130. Pretty frightening stuff! Lowest we have had his CO2 was 45.
When he was in HDU, they were poking him with needles for blood gases every 3 hours.. when he became unconscious, just before going to ICU, they elected to put in an arterial line in his wrist, to get blood gases every 15 minutes. That became ineffective and the poor thing now has an arterial line in his leg/groin
They do definitely have a humidifier on the Bipap machine in the hospital.. that’s for certain.
Anyways, it’s midnight here now, so I better get some sleep so I am bright and ready to face whatever tomorrow hits us with.. thanks all
Re: Stuck in hospital.. who knows how long :(Thinking and praying for you all x
Your poor partner is being turned into a pin cushion
I know it’s all necessary though! It sounds like the staff and support people are really doing a good job then – that must make a huge difference. From what I gather, here in my area, because the local hospitals in the county don’t have and ICU with intense respiratory support (and MD knowledge) that they can refer people fit for transit to the London hospitals where I go for check ups.
Of course we have the Olympics here (I’m in the county next the side of London it is on) and today received a letter about the transport chaos and what to expect for health and social care needs! Think I will cancel my London appointment at the resp clinic – it’s a side of the games people don’t seem to take notice off!!
Bye for now and look after yourself x
Re: Stuck in hospital.. who knows how long :(Hi Princess how are you both today ?.
As I sit here I am hand shaking the air directed at an open window.
That handshake will make it’s way to Australia and into your palm.
You will begin to feel a warm tingling sensation in your finger tips running down to your wrist. It will feel welcome and arrive only when you are ready. That felling is respect and admiration. When you feel it and that may be as you read this. Hold it, then when you see your signifigant other, Give it to him and tell him it was from me.Re: Stuck in hospital.. who knows how long :(I just want to say that I am sending positive thoughts and prayers to your partner and to you. It would be lovely to arrange a wedding day date, it would give him something to strive for and look forward to. You are so strong for him I really admire you. Best wishes to you both.
Love Val
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