Here we can all be heard for a little while. Part 3

mellymoo74

WaS just seen this.
Anything lung related looks terrifying and is hard on us watching as well as the people suffering.
The steroids will help and the fact he's ventilated is actually a good thing.
I'm. Here if you need me xxx

Ono I'm hoping you get the diagnosis you want
X

jobbingmusician

I've just thought, WaS.....

If you are panicking it might not have occurred to you to take a pad and pen with you to see WaSP. Get him to write stuff down calmly if he can't speak. Then at least the two of you can communicate

Ono - how's it going? When is your diagnosis due?

Waves_and_Smiles

That's a good idea JM, especially after last night.

I have been awake since 5am. The hospital called (you can imagine what I thought with them calling me at that time). WaSp had taken off his oxygen mask so he could sleep better, the next thing the machine monitoring his stats went crazy. He was so low on oxygen that he was hallucinating and despite nurses and consultants trying to persuade him he refused to wear the mask. They called me to see if I could get him to put it back on. He was close to slipping into cardiac arrest.

I spoke to him and he had a flat monotone voice I had never heard before. He told me he wasn't putting the mask on because the oxygen tank was punctured and had been filled with arsenic and they were trying to poison him. Now, I know something about hallucinations (haha) so I thought if he's like me don't tell him it isn't true or he'll think I'm conspiring with them. So I simply said "Oh dear, I am sorry to hear you think that".

We talked for a while about how that was the only oxygen cylinder in the hospital and that if he let them take it away they would just bring it back. So I asked if he portable oxygen cylinders had been affected? He said no. So I talked to the nurse and they gave him portable oxygen instead. I stayed on the phone and as soon as his stats came back up he fell asleep immediately and they swapped him back over on to the main oxygen again.

My nerves are shot to pieces.

onomatopoeia99

Blimey, well done WaS, some quick thinking there. My nerves would be shot after that as well.

jobbingmusician wrote: »

Ono - how's it going? When is your diagnosis due?

Thursdays appointment was not for tests but the consultant wanting to see how I was getting on. Since I'm back to normal he was happy. The lumbar puncture is coming this Tuesday and I should be getting another appointment for a vision test in the post. He said I should expect an appointment to discuss the results of all that in about four months (!)

pollyanna_26

Apart from feeling frazzled , worried and exhausted WaS you are managing your own fears and helping WaSp through his too. Anyone with a loved one in hospital many miles away would be anxious and struggling. You are like a tiger fighting for her cub and I'm proud of how you've faced the fears and got on with doing what is needed.


I remember you used to help young people many years ago in your working life. If you have a wobble think what you would be saying to them in tough times to help them through .


He's in good hands with caring people and that empathy is also being offered to you. It's a positive that you are able to speak to him in a way the staff can't though your own experiences . Of course we wish you hadn't gone though those times but they are now useful to help you deal with the Oxygen situation.


One step at a time . Take care.
polly


ETA Positive thoughts for Tuesday Ono . We've had some lengthy waits for test results but yours seems very long. On the positive side it probably means they aren't feeling it's urgent .

Waves_and_Smiles

Keeping everything crossed for you ono.

I am doing my best Polly. My mental health was bad before this but funnily enough my head feels clearer, I am in adrenaline mode right now and just fighting through, I just hope I don't crash massively when things are better.

I have joined a Vasculitis support group who are all lovely and very knowledgeable. Unfortunately this condition tends to get worse before it gets better and his consultant told me yesterday that they are just taking it day by day until they can stabilise him which in the worse case scenario could take 3 months. Prognosis is good once we are through this crisis period, until then it's a rollercoaster.

I have to hold it together, I am no good to WaSp if I go down.

Update-it gets worse. WaSp's oxygen is now so low even with support that he is still very confused and hallucinating. They have someone sitting with him 24 hours to make sure he doesn't try to remove the mask or wander off. They may take him to ICU this evening and are considering an induced coma simply so that they can treat him without him fighting them or trying to walk off. Tomorrow they will give him another plasma exchange to remove more of the inflamed cells in his blood to try to bring down the swelling in his lungs. This is now very serious and they will let me know of any changes immediately although I can call them if I am worried day or night. I am crawling up the wall.

pollyanna_26

WaS keep focusing on the positives . You have properly researched Vasculitis , joined a good support group , got to and from Wrexham and found the driver who is understanding . Considering it's only a few days since the ambulance needed to come and the shock for you both out of the blue that's quite a lot of challenges you've dealt with in a short time.


Adrenaline is our friend at such times but as you're aware it's a double edged sword . It gets us through then when things are sorted will lead to a crash. I would hope your crash will be physical exhaustion . Looking at your dealing with the move to Wales , starting to manage little walks outdoors and how you've coped with the current situation I'm seeing a different WaS to the one that made that first post as Worried and Scared . Yes there will be dark thoughts at times but something seems to have changed for you.
I don't know if during the training and working with people you came across the Parrot in the Head.


That was the part of very intensive counselling my dd had when the Aspergers was finally replaced with the Borderline BPD diagnosis .
The idea is to mute the parrot by challenging it's voice each time thoughts and memories threaten to pull you back . It's worked well , pops back now and again but she's given it a name and sends it on it's way.


I believe you can get through this . Make a list and tick a box every time you deal with something outside your comfort zone, Tell yourself well I did it and the sky didn't fall and carry on .
polly

pollyanna_26

I've just seen your update WaS . ICU and an induced coma will help them manage things better at the moment . Are you able to to engage on line with anyone from the support group for some moral support from those who have experience of these situations?


I hope you will be kept updated and will be sending some candlelight and positive vibes to you both.
polly

Waves_and_Smiles

Thanks Polly. Believe it or not his head consultant is a member of the support group and recognised me from my description of what's happening. She said I can email her anytime and she will try to answer any questions, fortunately she is one of the leading specialists in Vasculitis in the UK so he really couldn't be in better hands. She also said it is very treatable but symptoms do get worse before they get better so don't panic at this stage. The plasma exchanges to remove the ANC cells which are causing the inflammation should help a lot although he will probably need quite a few until the steroids and immunosuppressents kick in. They are on top of it as much as they can be.

Also I don't think this flat has ever been cleaner. We have an inspection on Wednesday (great timing) and I have been dreading cleaning because I hate housework. Since 5am this morning I have cleaned every room non-stop because I simply can't sit still. I feel like I could jog the length of the country and back right now, I am absolutely bursting with adrenaline-fuelled energy.

pollyanna_26

Well WaS reading about the head consultant has me thinking if you could have chosen a perfect team to be helping WaSp it was waiting for him at Wrexham. I was very impressed they phoned you to try and talk to him over the oxygen issue . OK it was a scary time of day to get that call but you were the only one who could sort it so they could carry on once he slept.


At least the adrenaline has got the housework sorted! You will be so tired when it drains but it's an important tick off the list.
I remember how you've struggled with these in inspections over the years but do you feel you can cope with this one? Could you focus on having an nice clear space to welcome him home



Use the time to challenge the habits and patterns of the past and see how it goes.
polly