Kawasaki Triples Club

Malc, Julie and Sarah, our thoughts are with you and keep strong in the coming days.

First of all THANK YOU for all the comments.Sarah continues to read what you are writing and really does appreciate it.

Iain remained stable but poorly yesterday.
Sarah was becoming more stressed and upset when she could not speak to the hospital. (See below.)
Its really hard for her stuck in the house 24/7 with one energetic little boy who does not know the meaning of sleep!
Callum is a real live wire and needs constant watching and attention but he is also her major focus so its a good thing too.

Sarahs latest text update to the family last night at 9pm.

Sorry for the late update.
I rang at half five (PM) and was told The doctor would ring me back within the hour
After two hours I had still not had a return call so I rang back and was told to ring back in five minutes.
It then took me 40 minutes to get back through (engaged)so they are obviously swamped with calls.
The doctor said the reason she was unable to speak to me before was that Iain was having a blip And she didn’t want to give me bad news when there wasn’t any need.
So last night Iain was starting to breathe against the ventilator himself which means they can’t get enough oxygen in his blood.
They have now given him a paralytic drug which stopped him from doing this.
She said he has no idea he’s paralyzed as they have put him into a really deep sleep.
This got his oxygen requirements down to 50%.
This morning (yesterday morning) she decided to reduce his oxygen to 40% and reduce his ventilation pressure.
She said he did really well until I rang and he started to desaturate a lot.
She has increased his pressure again and his oxygen requirement went back up to 60%
. It has come down to 55%. She said it is a small blip and he has now righted himself and is back to being stable.
He is still showing no other the signs of infection
His kidneys are working well and his temperature has remained normal.
She said at the moment he’s very sick but they don’t feel he is eminently in danger.
She added it is going to be a very slow process and to expect him to be on the vent for up to 10 to 14 days maybe longer.
She said it is trial and error with this disease and at present Iain is still a little bit too sick to start trying to wean him down.
However she said she’s going to try Again tomorrow to reduce the pressure and see how he manages.
His lungs are still showing inflammation and there is some fluid on them so therefore that is why mechanical ventilation is what they’ve chosen to do.
This will allow his oxygen levels to remain higher than if he was on a different form of treatment.
So he’s fighting it and we will continue praying he carries on doing so.

Update 8AM this morning

Hi ,Iain has had a stable night.
They tried reducing his oxygen and ventilator again but he started to struggle so they have put it back up again.

Sarah had a LONG conversation with the doctor last night who explained they are still learning about the virus but her overall view is that Iain is doing well.
She expects him to be on the ventilator (see above) and in ICU for some time yet but is confident that Iain can continue to move forward.

My good friend in the USA Rick Sines gave us real hope when he sent me the story of a lady (age 53) who was in ICU for 17 days and initially on 100% oxygen with a 20% chance of living. She had a real roller coaster ride but has now come home from the hospital.
Storys like this really do help us.

Sounds like Iain is a real fighter Malc
Tell Sarah we are all rooting for Iain and her and hop that he will be home with his family soon

Jeez, what a worry for you all Malc!. Really hoping that Iain stays strong and will be home soon! Thanks for sharing this story, it's important we all understand just how serious this thing is. Stay safe... Kev M.

So sorry to hear your sad news Malc my thoughts go out to you and your family, I only hope and pray you all get through this ok,stay safe and you know we are all here for you.
Mark b

Text message from a former workmate to day. Him, his wife and 2 kids all have covid19 but to a much lesser degree. He said he had improved for a few days but then went backwards today. This seems to be a recurring pattern, as with Iain. Hopefully it wont be long before it will be improvement upon improvement with no back steps.

Olde Coney wrote:Our thoughts and prayers are with you all

This bloody virus puts all other things into perspective

Totally agree.
6 months ago we were beating the hell out of each other over Brexit.
How petty does that seem now ?

THANKS AGAIN everyone for all the continued positive comments.
Sarah is reading it.

Sarahs latest update Last night 7.30PM
Hi I’ve spoken to the dr. Different one today!
She was very nice she said he’s had an up-and-down day again.
She said his oxygen is now at 70 to 80% and not to be shocked as this is what they are seeing with coronavirus patients.
He has had to have his sedative increased as he was obviously becoming a bit more aware and since they’ve upped the oxygen and sensitive he’s been extremely stable.
Therefore she’s going to try and wean his oxygen and pressure is down now.
She said he is Poorly but he’s very stable.
Which remembering nurse talk there’s a massive difference between very poorly and poorly so he’s obviously improving to a point.
She said to expect him to be on the ventilator for at least another week.
At the moment his lungs are quite filled with fluid and inflammation.
They have started him on a diuretic today which is a water tablets which they are hoping will reduce the fluid in his lungs.
His kidney function is OK but the diuretics may make this go off so they will have to review.
His blood pressure remains OK as well.
She said he is following the pattern of most of the coronavirus patients that they’ve seen and it will be a long process.
But overall a positive day. keeping those prayers up xx

Update this morning
Iain had a settled night.
No major changes apparently.
His oxygen had gone back down to 60% at 11PM when I rang and she said it may go up and down still.
They are checking gases like they did in NICU (premature unit) with Callum and Iain has been stable.
And the good news is he was still stable when I rang at 5AM xx

One of my son Michaels best friends has become a doctor and Michael is sending his friend Mo, Sarahs updates, (at sarahs request) for his comments each night.

This was what Michael said after chatting to Mo last night.

That’s all good. After chatting with Mo about it, I am feeling confident - it’s very good that he has stablised and given his age and no under lying health conditions, it’s just a time thing for his body to recover (usually about one more week).
So we just have to be patient and stay positive, but it seems like he is doing a really good job against it

Sounds very upbeat Malc, you and your family are in my thoughts for much of the day, I can only wish and pray that good progress for Iain continues,

We can only imagine the trauma that this illness is putting both patients and the NHS through.

Keep Safe all, Mike

This news sounds much more positive and a bloody relief to me and others I'm sure

Cummon Iain, keep fighting we are all willing you on

good to hearThumbs Up

Hello Sarah, Callum, Julie and Malc.
Our thoughts and prayers are with you all EVERY SINGLE DAY! Please try and take some comfort from knowing how many people love you all and what a great community of friends here on this site that you have. Iain is such a figher and how privilaged we are to have such wonderful, studied specialists in the Doctors and Nurses. Take the positivity that Iain is stable and in the best care he can be in. Lots of love for now, Love, Anne and David. Ania and Dave and Kuba and Stella (Anne's Mum).

Wow
I really don't know what to say mate
I just can't imagine what your family is going though
Sending our thoughts and prayers
Gary and Jo xx

Hi Malc, it sounds like a long struggle but one he is holding his own on, the stress for you, your daughter and family must be huge, there are no words of comfort apart from that he is in the best place and with the best people looking after him.
I can imagine what it’s like as my partner was in hospital with acute kidney failure for months and at times it looked like she wasn’t going to recover, she did and it was down to the brilliant care she got. We have to self isolate as she has a severely reduced immune system.
I am thinking of you and your family
Hobbo

Thank you everyone for all the positive thoughts and comments.

Sarahs comments from yesterday
11AM
Spoken to the nurse. She said he had a very stable night. His oxygen requirement has come down a bit and he’s managing. There are going to take a sedative off today and see how he copes. They’ve also started the diuretic as well. He’s been started on furosemide which I remember Callum was on xx

5PM
Hi I’ve had a call from the infectious disease team. They want to ask if we can put Iain on a trial looking at either keeping the care he’s getting now, or adding an additional drug. This would mean adding an antiviral, anti-malaria, or a steroid drug. I have said yes as I feel that anything may help at the moment what are your thoughts. Mike has Mo had any experience on this

When Callum was in ICU being so premature he took part in 3 drug trials. One of these trials repaired a small hole in his heart. We know Iain would give the go ahead to take part in a trial for himself and as afamily we support Sarah 100% in this decision.

From Mo - I’m afraid I've no experience. Conflicting reports about whether or not they help. I’m guessing the antimalarial drug is hydroxychloroquine?? What’s the antiviral? I personally would agree that if something doesn’t cause harm it’s worth trying

7pm
Hi Had an update from the doctor and today has been a progressive day! Iain has had his paralysis medication stopped and so far has managed seven hours without needing it.
They have increased his sedation to make him more asleep and they have not had to change his oxygen requirements [60% at the moment] which the Doctor said was really good.
She said his inflammation and bacterial markers had come down but were still not where they wanted it to be.
He has started with a temperature again but she said this is common in COVID-19 patients and she is not concerned at present.
They are monitoring his gases and bloods regularly and any sign of infection they will undertake the appropriate treatment.
She again said although this has been a progressive day to not get ahead of ourselves and in her experience as an intensive care Dr, we have to literally take it day by day.
But today has been a progressive day she is going to be trying to wean his oxygen over the weekend down and see how he manages but is letting him rest for the moment.
The infectious disease team have been in contact due to his COVID-19 and his severity. They are trialling three drugs, an antiviral, anti-malaria or a steroid on COVID-19 patients.
I have agreed for him to be part of this. The doctor has explained they will be given the selected treatment (which may even be just the treatment they give now if he does not get selected for a drug) and if they feel it is not appropriate for Iain they will not give it to him.
She said he is still very early in his ventilation and we’ve got a road ahead but he’s made some good baby steps today. Xx

11PM
Sorry it’s late but had to share my excitement. I’ve just rung. Iain is still managing without the paralytic drug so over 12 hours now. They have also turned his ventilation right down and he showed he could breathe on his own! They only did this for a small while and they’ve now put it back up to let him rest but all
good

Great news Malc
Keep fighting Iain
Gary and Jo

Oh Malc, this is a traumatic experience to just read, so to be on the front line as you guy's are, well, I find unimaginable really.
Wishing you all every strength to get to that light at the end of the tunnel which is becoming significantly brighter now, than the pale flicker it started as.

I wish the dolts out there that are flouting the clear advice and instructions just understood what it really means to be in such a position and having these wonderful people fighting at their personal risk to save lives.

I also hope that after all this, that the government really understands what we have, as a nation, in the NHS, and changes the course of the ship it has been steering to pull it apart the last several years. Boris having had first hand experience should strengthen this cause I hope. Seeing what is happening in the USA, I really don't envy their medical care model dividing the haves and have nots.

Great news, we are all willing Iain on, sounds like you’ve got a great care team.

Fingers crossed