Written by: Admin

Today didn’t get off to a great start but has ended on such a high, even as I write I can’t get a stupidly happy smile off my face.

As far as I can gather this morning was pretty rubbish.  Lots of things happened all at once and although none of them were particularly drastic, they didn’t help improve Oli’s already negative frame of mind.  Big bro was there thoroughout the morning and after a while deemed it necessary to give younger brother Oliver (because you always get called by your full name when you’re about to get told off) a bit of a talking to about taking a fresh perspective on things and seeing that things may not be as bad as all that.  Big bro is a muchly big legend and after leaving Oli to think things through, Oli had the biggest turnaround I think I’ve ever seen.

I have to admit I haven’t seen Oli now for two days as I have a very important Uni’ interview next week that needs a lot of prepping for.  It hasn’t been much fun not seeing him,  especially when I know he has been having a difficult time, however now I know that this afternoon he has been chatting, laughing, exercising, and more  I couldn’t be happier.

I have proof of happiness, too.  At some point this afternoon my phone rang with Oli’s number showing.  My immediate thought was along the lines of “who could be ringing me from Oli’s phone?”, who else but the man himself!!!  Yay!  I couldn’t believe he felt well enough to even look at his phone, let alone call.  What’s more, we had a good few minutes chat, mostly from his end as I couldn’t stop repeating “I can’t believe you”re calling!”.  This evening more happy surprises came through as Oli sent me some text messages, and because he managed to link a few together to make another conversation put me back on cloud nine!

This really represents a massive breakthrough for Oli’s mental state, he’s had such a bad time over the past few days, being stuck under a big black cloud and taking the big black dog for a walk.  It’s so great to hear from him and know that he really feels happier and is able to look positively at his achievements and see what’s ahead in a positive light.

We’re on such a journey together, all of us, and we’re going to come across many ups and downs.  It’s so important to treasure the good as it’s often what can help you get through the bad.  It’s also really important to have a big brother to give you a kick up the pants every now and then! 

Oli’s progressing steadily now.  Physically it seems like everyday another tube/drain/wire is removed (I strangely now have an image of ker-plunk! – forgive me, I am very tired).  Even his catheter has been removed today, which although meant a big ouch, also means that the team are happy with his fluid outout and also means that he will have to physically exert himself a little everytime he needs to pee (sorry, too much information).

Mentally, he is taking things hard.  A lot of it due to the remaining tubes still pumping in various drug cocktails.  Anxiety is a big issue right now but the nurses are fantastic with him and have clearly seen all of this behaviour many times before.  Alongside the anxiety are confusion and disorientation, both of these add to the anxiety.

It is still very important to remember that it is early days, as I am writing this, Oli was just about to head into theatre this time last week.  Oli is progressing very well and hitting all targets that the team look for and is certainly not taking any steps back.  Physically, Oli is nigh on exactly where he ‘should be’ (a term used very loosely as recovery is a very individual thing and can’t really be generalised).  However, he is still very scared that something might go wrong. 

The support you have all given Oli so far has been phenomenal.  Please don’t stop your prayers and good wishes for Oli as he needs them just as much now as he did a week ago. 

Please also remember the donor’s family as I can imagine they are still very much mourning the loss of a loved one in the time when a lot of people are in high spirits for the approaching Christmas. I’m sure they’re not feeling too Christmassy right now and could do with lots of love heading their way.

Lots of love from me x

Not much more news again tonight.  Oli is good, his brain and the lungs have definitely begun talking more as his CO2 levels are brilliant and if he continues to breathe deeply then he may only need two more nights on neve, hooray!

The central line in his neck which takes the antibiotics into his system packed up this eve, just as he was calming down for the day.  After one numpty doctor and three numpty failed attempts to re-site the line in his arm, a clever nurse remembered his portacath (after some gentle prompting from Oli’s Mum) and the line was sited in one attempt.

We left Oli trying to get over the stress by chilling with his Dad.  Now he has no annoying lines in his neck, I hope he sleeps better, we’ll see.

***Now we’ve reached a kind of plateau where progress is good and steady, I might not update each evening unless there is something I think you’d like to know.  So from now on no news is good news and written news is super news x***

Hi guys, gonna be a short one today as am really tired this eve and my brain is just about to close down for the day.

Oli is good.  All his levels are good, CO2 is a bit high but neve is doing good stuff at keeping levels in check.

It seems like it’s going to take a couple of weeks for brain to make friends with the new lungs, a few messages are getting through from brain to lungs and vice versa but they’re not really best buddies yet.  We’ve been reliably informed that a couple of weeks will make them firm friends.

Oli’s very tired, drugs and lack of sleep are making an already tough job even tougher – however, as we’ve already seen, he is a super trooper and is toughing it out.  I think he may see the steady progress as a bit of a backwards step which it most certainly isn’t.  I know that not being ‘with it’ is frustrating Oli but we are happy in that these are the early days when Oli is so full of these drugs which make him woozy and play with his mind that actually, when he is up and running, Oli probably won’t remember anyway.

Night night everyone, sleep tight x

We had a lie in today to catch up on some much needed sleep and so went to see Oli this afternoon.

I wasn’t there when they moved Oli to the ward yesterday so was really pleasantly surprised when I walked in to see that he has a tv/dvd player and a fridge that I’m sure is meant for important things like drugs but that we have taken over to store chocolate milk and other vital get-well-soon yummy things.

Oli’s had a very tough day today.  Don’t get me wrong, he’s still doing fantastically well, but I think today might have scared him a little and made him see a mountain that he wants to be at the peak of before he’s really set off.  It appears as though his brain is finding it difficult to trust that his lungs do actually work fine and are capable of working harder than he’s pushing them to.  The amazing team around him have been encouraging him to take deep, slow breaths in order to open up all of the airways and make sure the alveoli at the base of the lungs are being used.

In order to give Oli a bit of help with this, they’ve given him another Neve (our name for NIV – Non Invasive Ventilator), like he’d been using pre-transplant.  The idea behind it being that it takes an awful lot of effort to breathe deeply when you’re not used to it so neve can aid Oli at times thorughout the day and night, especially when he is tired or when his CO2 levels go up.

Oli hasn’t taken to this new Neve much, she’s very much the same as the one he’s used but he now finds the mask a bit claustrophobic (pls forgive spelling mistakes) and has been getting panicky after short periods of use.  The marvellous nurse Jason who was looking after him today managed to finally tweak the settings and adjust the mask and eventually this evening, Oli has been more comfortable on it.  We hope he might use it tonight to help him sleep well, I really hope it works for him.

The other, slightly scarier thing Oli has found difficult today has been the hallucinagenic side effects of the very strong drugs he is on.  Apparently it isn’t unusual (we had actually been forewarned about this by Emily who told us she liked to imagine conversations with her doctors!) but it is never-the-less not pleasant, and this evening after starting with seeing shapes and squiggles led to thinking the bed was trying to swallow him. 

We left him tonight calmer but exhausted and with permission from the docs for his big bro to stay with him in his room tonight.  I really hope he gets some good sleep.  Sleep is so important for the body to heal and he has a hard enough journey ahead already without suffering from lack of sleep.

See you tomorrow x 

Super quick  note but this made me giggle, I wasn’t there but this is what I imagined happened – the gist is true.

Doc: Good morning Oli, look, if you can eat more today we’ll take out more drains from you. 

 Oli: (having already eaten 2 weetabix for breakfast)  Ok doc, in that case can I have 2 more weetabix and some toast?  Thanks.

I wish I could bottle some of Oli’s inner strength, it would sell for millions!

Following the update below that I wrote at half 11 last night, there have been more amazing developments.  As of 2.30pm Oli will be out of intensive care and on to the ward, this boy clearly doesn’t hang about!

He looks amazing, in fact the only way to describe it really, would be to say that he looks alive.  Fully, properly, healthy and alive.  This has even surpassed our wildest dreams.

He’s awake and talking quite happily, taking deep breaths which amaze him as he is still breathing out after he’s stopped talking, he’s had lunch (a ham salad, but he’s not written up for creon so he couldn’t eat the ham!  I don’t think the docs even considered putting creon on the drugs chart this early), and he even cut up the bit of tomato himself.  This may seem like a little thing but it’s a HUGE deal when you’ve had a life changing operation.

That’s about all for now as I’m off back home to catch up with my family and have a bit of a rest myself.  I’ll be back tomorrow though so look for another update then.

Thanks for your patience x

I have to apologise and sayI have completely copied this from Emily’s post on the My Friend Oli site, huge thanks to you Em – you’re a super star. 

 IF you want to congratulate Oli yourself;

Hurrah!!

Right. Cards are fine and can be sent to:
Harefield Hospital
Hill End Road
Harefield
Middlesex UB9 6JH
UK

Instead of presents a small contribution to Oli’s post transplant fund (made out to Oliver Lewington) can be posted to:

For the Attention of Rose Donnelly
Cystic Fibrosis Trust
11 London Road
Bromley
Kent
BR1 1BY

Where it will be kept safe and sent to Oli on his discharge.

I read some cards to Oli yesterday (he has been reading them himself today!) and he was hugely chuffed, thank you for sending them x

Well, it’s about 11:15pm and we’re exhausted.

Oli has been an absolute hero today.   After leaving theatre and being in the Intensive Therapy Unit by 7am we expected to see a very sound asleep chap for most of today and for the next few days.  We were pretty wrong, as always, Oli likes to make an impact and boy did he make a great start.  After lunch Oli’s big bro and I came back from a dash back to Milton Keynes to pick up a few mislaid essentials to find that he was already off the ventilator and breathing on his own with his new lungs, words can’t describe how wonderful and amazing it was to hear those words.  He then followed suit by talking more throughout the day, taking sips of water and transferring from an oxygen mask to nasal specs.

I’m sure this guy is super-human.

However, it is important to recognise that we are still very much in the early days and anything can happen.  He has achieved so much today, all down to his own strength and determination (maybe the doctors and nurses and other medical type people can take a little credit!), we need to acknowledge the achievement today but see each new day as another step, hopefully in a forwards direction.

If you would like to send a card, details will follow very shortly.  The same for info about any gifts you may wish to send. Watch this space…

Apologies for the slowness of updates, I’m managing to write them each night but internet access is very limited, please trust that I am updating as soon as I can log on.

This is only a brief update, more will come later, I promise.

 Oli’s operation went really well.  He went down to theatre as planned at 00:15 and was in ITU by 7am.

We’ve seen him a couple of times but he is really,really busy at the mo with lots of wires and gadgets attached to him to monitor every aspect of his recovery.  He looks really good, when we first saw him we noticed how his breathing had changed already – it was amazing and unfortunately for you guys pretty indescribable.  By the time we saw him again later the nurse was really busy and so we left her to sort Oli out.  His breathing had become quite shallow and he was trying to get rid of the ventilator (this is a good sign).  The bat plan for now seems to be stabilising his breathing so that they can take him off the ventilator and slowly bring him round.  They mentioned that if all goes to plan he could be back on the ward by Thursday, however, it’s really important to remember that it’s early days and it’s perfectly natural and ok if he takes longer to adjust.  We all running to Oli time at the minute and that can happen as quick or slow as he needs.

 I’m off back to hospital with Oli’s bro, we’re going to be tag-teaming visits with Oli’s ‘rents so that we can be with Oli as much as possible.

 Thank you for all your kind messages, please be assured that Oli will see them as we are compiling a memory book for him.  While we’re waiting for him to wake up we may even read some of them out to him. 

We are so happy for Oli, this is truly the most wonderful gift a person can get and so in your prayers for Oli please take time to pray for the donor’s family as they are dealing with the pain of grief.  I would also ask you to take 2 minutes of your time to sign the organ donor register, if you haven’t done so already, at www.uktransplant.org.uk* and follow the links.

Back soon…

*Emily if this is wrong would you mind correcting it for me in a comment?  thank you x