Speechless is completely how I feel at the moment.  You are all the most amazing bunch of people and the messages you’ve sent Oli have been so wonderful and heart-warming.  These messages are so important for encouraging him and letting him know just how many people are sending love and prayers his way.

Today has been another fantastic day.  Oli has been introduced to the Little Blue Book (he’s assured me the little black book was thrown away a long time ago).  The LBB holds all the dosage detail of his medications which allows him to be in charge of what he is due and when.  This is a very important step for him as it is part of a checklist of things that he needs to be able to do before he is allowed home.  As a CF patient, Oli has been used to self-medicating for years, however, this is a whole new area for him.  Oli has to learn about the drugs he takes and needs to remember to take them at the right times and in the right dosages.  It won’t take him long as he is used to taking regular medication but the list of drugs is HUGE so he’ll need to be a memory man for a while until it becomes second nature.

Another awesome step forward came within the Doctor’s orders, Oli has been told to go out for a pub lunch on Saturday! Even as I write I am grinning stupidly from ear to ear!  It’s so odd to think how quick these things are moving.  It has been three weeks since the transplant and in so many ways it feels like longer as we’ve been through massive highs and despairing lows.  It’s so amazing to think that this gift has changed our lives so quickly and so wonderfully.  Oli is doing so well and is making great progress, almost hourly it seems!  If you haven’t already done so, please consider signing on to the organ donor register at www.uktransplant.org.uk.  If you have signed up, please talk to at least one person tomorrow about Oli’s miracle, Emily’s miracle (www.pinkandsmiley.blogspot.com), Peter’s miracle (http://waitingforthecall.blogspot.com) , James’ miracle (www.ox28.com) and the other miracles that are waiting to happen.  Encourage them to think about signing up, too.

You are amazing, hope you’re enjoying the ride as much as we are x

This post has been a bit slow in coming, am really sorry. Thankfully though, it’s not for bad reasons as Oli is doing really well.

 Oli is now completely wireless, the vas-cath and catheter have now been removed.  This has caused much excitement as today Oli was able to put clothes on and feel more ‘normal’ (there are so many jokes about Oli + normal, you’ll have to think them for yourselves as there isn’t space for me to put them in).

Oli has also had almost all of his pills and potions stopped by his consultantas he wants to see how Oli manages without them.  This makes a big difference to his system as he did have a pharmacy’s worth of various medicines rolling around his insides, much to his kidneys dissatisfaction.

The days have been going brilliantly for Oli but the nights are still difficult.  He is getting increasingly homesick and from 6pm starts to get himself wound up about us leaving him and not wanting to be alone.  It’s completely understandable but it’s also something we really need to try and find a solution to as we don’t know how long it will be before he is home and we don’t want it to remain a problem.  It has crossed my mind that you guys could really help at this point.  Every comment that gets written and posted gets sent through to his phone so that even though he doesn’t read my posts, he sees your comments.  If you think of Oli at some point in the evening after 8pm, please leave a comment telling him just that and then he may not feel so alone.  I don’t know if it will work but it’s worth a try if it will help him feel less lonely.

There’s not really any more news as things are progressing steadily and with a definite upwards curve.  As a very marvellous man said to him yesterday “This isn’t the face of a worried consultant”. Yay!

In case you haven’t read it, please check out the ‘A message from your host’ post which is before this, it’s a very special post that I know you’ll want to read.  I wasn’t keen on writing over it but I’ve had my orders to keep everyone updated and now Oli can run faster than me I’d better not make him grumpy!

Today has been anothr great day, I really can’t think of a time when I’ve been as happy as this, it’s the best feeling in the world. 

When Oli’s Mum and I got in to see him this morning we found a sad and tired Oli who didn’t really want to play this game anymore, I think the night on dialysis hadn’t helped him get any sleep and the extra fluid around his body (all 8 litres of it, not nice) was making him so unformfortable that he didn’t know where to put himself.  Oli’s Mum got sent off pretty quickly to go on an apple juice hunt and I just sat myself near him, at the end of his bed.  After a couple of quiet minutes he looked at me and said “I need to pull myself out of this don’t I?” and we came to the decision that I was going to put some music on the cd player (thanks Kate!) and Oli was going to sit up and be more positive.  From that moment on Oli’s day just got better and better, and better!

The Big Head Dude Doc Man (who needs capital letters because he is that important) came in to see Oli and decided that the majority of his remaining wires, tubes and drain should be taken off.  We were so happy!  The central line, which has 3 or 4 lines in it and is in no way connected to the London Tube, in Oli’s neck has been removed and instead they have re-accessed Oli’s portacath which will be used for his IV drugs.  The arterial line (I don’t know what this was for, I think it may have been blood gases) from his groin has been removed, the final chest drain has been removed and he is no longer on the cardiac monitor. 

The reason for all of this, apart from being well enough to be taken off of everything, is because of all this nasty extra fluid.  The overnight filtering has really helped, last night 2 litres of extra fluid were removed by this dialysis machine, but the body will be able to shift the fluid much more easily if Oli is able to do more physio, which in turn is easier to do when wireless.  The lines in Oli now are the port when it’s in use, the vas-cath (in his groin where he connects up to the dialysis machine at night) and his catheter.  Hopefully the vas-cath will come out tomorrow and once the extra fluid comes down and they are needing to check his urine output so much, the catheter will also get removed.  I’m not sure how long they will give Oli the IV drugs but at some point they will stop using his port and give him oral antibiotics instead.

This evening Oli doubled his 40m record.  It’s so amazing!  I wasn’t there for it but Oli phoned me to tell me and the joy and emotion in his voice made me want to cry with happiness – this is someone who 3 weeks ago was really quite poorly and got out of breath getting out of bed, this really has been the gift of a lifetime for Oli, and for us.  Oli was telling me how he walked from his room to the end of the ward and back and said that the nurses were beaming at him and the kitchen porter guy (official title, I’m sure) was cheering him on and telling him how good he looked!  Oli also said how he met a nurse he hasn’t met yet, she asked him what he’d had done and that made him realise HE hasn’t told anyone yet – lots of people know but not from him, for the first time he said ‘I had a double lung transplant nearly 3 weeks ago’ and when he looked over and saw his nurse’s face, Oli could see exactly why this nurse did his job, Oli said it was such a picture.

This evening Oli was able to spend a lot of time with his Big Bro who has come up to see him for the weekend, this is the same legendary Big Bro who gave the butt kicking last week.  Wow, must this be a different Little Bro he is seeing!  Following his legendary form, Big Bro has set Oli a challenge that has been agreed to (witnessed by Oli’s Dad, so no getting out of it).  On April 10th 2008 Oli will run alongside his Bro and his Bro’s marines for the first mile of the CF Trust’s Tresco Marathon.  How unbelievable is that?!  I’m thinking that all those who promised to wield big sticks at the previous exercise programme might need to get those sticks out again!

Bring it on!

It’s Oli here. Hello! This won’t be long as it’s quite hard to type long things on my ‘berry and i’m still not up to much in the way of telephonic communication.

I really wanted to write to thank every single one of you for your wonderful prayers, thoughts, best wishes card, messasges and comments on the blog – all of which get emailed through to me on my phone.

I’m sorry i’m not replying or responding, but things are still pretty up and down and my hands are so shaky that texting is tricky. Kati’s update on the day will tell you much more, but things are improving greatly.

It means so much to get your messsages and read your words of support. I promise I’ll get round to a proper catch-up with everyone soon.

Take good care of yourselves cos i’m coming for hugs when I get out!

I’ve had such a lovely day and am in such a happy mood tonight, the world is so fab right now!

Today I spent the whole day with Oli as I haven’t seen him for a couple of days and I had lots to catch up on.  Oli seems really good and there’s not much to report to although it may mean boring reading, it actually means things are going well.

The morning was a blur of drugs, floor washing, Oli washing, Oli eating – pretty run of the mill stuff but this afternoon the physio’s decided it was time for Oli to see the outside world and show him that life is carrying on.  It was a bit of a task to get him into a wheelchair with wires and oxygen and drain and drip stand – we definitely held up the corridor for more than a couple of people!  It was so great to get him out and about and show him that the Christmas decorations have been put up in reception and where we sat waiting to go into ITU.  Perhaps more excitingly than any of that, we found a vending machine that has Oreos in it, I promptly bought 3 packets in case they decide to stop selling them!  On the way back we got to the magic white spot which is on the floor just inside the double doors of the ward.  This spot is where everyone takes their first steps and sees how they cope with walking after being in bed for a while.  Oli walked 40 metres back to his room and completely shocked himself when his legs felt wobbly but he wasn’t even out of breath!  It was quite funny to see him sit down in the chair and watch the emotion completely overwhelm him, it was almost possible to see his brain trying to take in what he had just done.  He didn’t stop the exercise there, as soon as he was sat down in the chair in his room, he asked for the foot pedals to be brought over and he did two sets of 3 minutes, one after the other!  The determination he has is phenomenal, truly astounding.

The afternoon was much like this morning, completely busy and barely 10 minutes without it being time for something to start or stop.  The chyle drain has stopped, we think, but it was being left in overnight just to make certain and may come out tomorrow.  Tonight Oli is on dialysis again but only because he is retaining so much fluid and it is starting to make him feel so uncomfortable that the dialysis should give the body a helping hand at balancing out the fluids.  Oli was also told this evening that after the weekend it is likely that the staples from the transplnt wound will be taken out.  I don’t know how he feels about it as I didn’t get a chance to ask but I know that I feel like having the staples removed makes it that much more real as it means he has healed well and is getting better.  It’s an odd feeling, happy but odd.

I love visiting Oli, it’s great just to be in his company and sit and chat or sit and chill.  It’s really great to know that it’s ok to be in a room with each other and not feel the need to talk all the time.  It’ll be so great when you can all come and visit him (not at once as his room is quite small) and see the change in him and see how alive he looks now, you’ll notice it straight away.

Thank you so much for your kind messages, it really helped my confidence yesterday knowing that you guys were thinking of me.  I have completely fallen in love with UCL and although I’ve tried really hard not to set my heart on studying there as soon as I saw it I really felt it was the place for me.  I’m not sure how it went, the interviewers were very experienced and didn’t give even the slightest hint or smile that you had said the right thing.  They’ve promised that we will hear by Christmas.  I am happy that I gave the best answers I could have and now it is up to them.  I’ll let you know if it’s good news when I receive their letter.

If you don’t know what the truffle shuffle is, please do not read any further, instead go to blockbuster and rent ‘The Goonies’ and come back when you’ve seen it!

Oli went back to the ward yesterday morning.   As his Dad commented, it was possibly more a case of winning the ITU lottery of being the most well person on ITU and getting sent to the ward to free up a bed space for someone in need of ITU care.  We weren’t about to complain tho’.

After we helped distract his mind from potential looming left side op Oli, his mum and I had a pretty pleasant morning together.  He sat in the chair for a couple of hours and we chatted in between interruptions from nurses, physio’s, a radiographer, doctors, lunch -it’s never dull during the day for Oli, he has a heavy schedule.

We found out that Oli will need to use neve overnight again and also use a PEP mask hourly throughout the day.  I’m sure people familiar with CF know about the PEP but I’d never heard of it until the physio explained it to me.  When you breathe out through a PEP mask pressure  maintained by something in the mask helps keep the airways open which make it easier to displace goo.  The fab physio then explained to us that some people don’t recognise when they have stuff (technical term) on their lungs and their body may not react to infection (raise in temperature, etc) until a significant amount has built up.  Oli likes to stand out and so it didn’t surprise me to find out that that is the why the infection wasn’t caught until Friday in theatre.  As the bronchoscopy on Sunday didn’t show much more goo build up a bat-plan has been formed to increase chest physio (Neve, PEP mask & deep breathing exercises) to keep the airways open and hopefully clear of goo.  It certainly sounds like a good plan, let’s hope it works.

All of the other signs were good, oxygen saturation levels are fine and fluid output was good.  A not good bit is regarding his overnight feeds via NG tube. 

As with most people with CF (I think, although some maybe to a lesser/greater extent) Oli’s body is not able to produce certain enzymes to breakdown fat, this means that every time Oli has something with fat in he needs to take Creon 25000 which helps keep things moving nicely.  We discovered on Sunday that while in ITU the staff were not giving him any creon for his overnight feed.  This is really not good for Oli, especially as the feed is dairy based and full of calories to aid speedy healing.  He was really starting to suffer from it yesterday as the day progressed.  His tummy was really swollen and hard and you could see it was causing huge discomfort.  He was starting to get into a cycle of being in too much discomfort to eat but if he didn’t eat they would need to put him back of the NG feed.  It was also affecting his breathing because his tummy was pressing on his diaphragm and causing pain, when in pain breathes get more shallow.  Really not a nice situation to be in.  I haven’t seen him today but I know that they were planning a procedure, that some people pay for, to solve it and I know that it must be bad as when it was first mentioned yesterday he said he’d do anything that would work!

The other interesting thing to come from yesterday was when we were discussing his progress yesterday.  Oli said he was having difficulty seeing if he was making any progress, his Dad and I just looked at each other and I know my thought was along the lines of ‘Where do I begin?!’.  Everything is still difficult for Oli to do and it took a little while for us to explain to him that although he finds everything tiring, actually the difference in him is amazing.  Yesterday was his first day out of ITU and he had sat in the chair a couple of times for a couple of hours each, he had got up and down again a few times to use the commode, he was doing his exercises every hour with fail and staying awake all day.  When he was first out of ITU a couple of days after the transplant Oli found it difficult to be awake for long periods of time.  Oli seemed to understand then that because he always found tasks tough it didn’t mean things were getting harder, it meant he was able to achieve more and so could be pushed to do more.  I’m really pleased we help him feel better about himself, sometimes you need the people around you to tell you just how great you are, whether you’ve had a transplant or not!

So to the truffle shuffle!  As part of the plan not to have to go back to theatre a clever doc man blew some powdered glue into his left side cavity  and then told him to move around lots and make the powder turn to glue.  He spent an hour truffle shuffling so the glue would stick!  We find out tomorrow if it’s worked.

There probably won’t be a blog tomorrow as I have a big and scary interview at UCL to get a place on their Speech Sciences course next September.  I’ll try and get news from Oli’s Mum and Dad and do an update but if I don’t manage to I’ll update on Thursday.

Hi guys, this has got to be really brief as I’m so tired this evening. I promise to write a full rundown of today’s goings on tomorrow.

Oli’s had a good day overall, docs are pleased, one drain to come out tomorrow leaving two behind, wound from Friday is healing well (and looks amazingly teeny).

There was discussion this morning of Oli going back to theatre to get the left side of the chest cavity worked on.  Oli wasn’t hugely in favour of this plan, understandably, but the chest surgeon doc lady came to see him this afternoon and after seeing that only a little chyle (my new word for the day, it is to be used in place of the word leaky fluid)  was now draining said that she may not need to do any more work but will keep an eye on the output over the next couple of days.  Oli is very happy with that news, fingers crossed for no surgery.

We left him fairly happy this evening but overwhelmingly tired, I hope he sleeps well.

More detail tomorrow, I promise x

As a side note, when looking for the spelling of my new word ‘chyle’ I came across the most amazing word I think I’ve ever seen – Lymphangioleiomyomatosis – I love it!  I think it may be a place in Wales, if not, it should be.  Night night x

*Before you begin to read please make sure you are comfortable, this may turn into a long rambling post, apologies!*

Oli is doing so well.  I was really excited today because I haven’t seen him since Thursday and even then he was asleep.  I have to admit, I was a little nervous about seeing him because I didn’t know what to expect, in my head was a picture of a very poorly Oli attached to everything and not very communicative.  I was sooooo wrong!  Oli was sat in a chair, next to his bed, when his Mum and I walked in at 10.30 this morning. 

I don’t know how much you guys know but ITU has very strict visiting times, necessarily so, it’s a busy place.  In the morning visiting time begins at 10am and finishes at 1pm, there is a break for a couple of hours and the second visiting slot starts at 3pm and finishes for the day at 7.45pm.  I would have thought that the majority of people in ITU are heavily sedated and so the time could potentially pass by without them taking too much notice.  Unfortunately for anyone who is completely aware of goings on (if maybe a little confused and overwhelmed every now and then), the tiny visiting slots are very precious times that need to be filled with constant, loving company.

These tiny visiting slots are often made even smaller due to the current system of intercom admittance to the unit.  I really want to point out before I go any further that this is definitely not a criticism of the staff who work in the unit.  Every member of staff I have seen there has been working so unbelievably hard and doing their job of taking care of very poorly people. 

HOWEVER, the intercom system does not work as efficiently as the staff of the unit.  It works like this… Visitor presses intercom buzzer, buzzer is answered and visitor announces who they are and who they want to see, ITU person goes to check that the patient is ok to accept visitors and then returns to buzzer to let visitor in.  Sounds simple?  It should do, but it can take a long time for the buzzer to be answered, the ITU person can fail to come back to let you know if you can visit or not, the ITU person doesn’t press the admittance button to open the door so you have to go back and press the buzzer, blah, blah, blah. 

So today, Oli’s Mum and I arrived at 10am but didn’t get an answer to the buzzer until 10.30am and when we got to Oli we found him quite distressed as he’d been told that no visitors were waiting to see him.  It may sound small but it’s a BIG thing.  Try to imagine being hooked up to all kinds of things, alone in a bed for 14 hours without any form of entertainment, feeling scared and clock watching, hanging on to the hope that at 10am your Mum will come in and give you a hug.  I really felt for him when we found out that he’d been told that no-one was there for him, he had suddenly turned into a tiny, scared little boy whose Mummy hadn’t turned up to collect him from playgroup.  I’d love to help them find a way of making the intercom system run more smoothly, it makes so much of a difference to patients.

So ramble over and back to Oli.  He is good, he looks good and I couldn’t believe that he was sitting up, out of bed.  After the initial drama he was chatty, until he got tired, and seems to be completely ‘with it’.  His is no longer on kidney dialysis as his body has corrected the imbalance of sodium, potassium, etc.  He is on a little bit of oxygen, via nasal specs, but is largely as we left him on Thursday.  The drain for the important leaky fluid is at a good level and all things being well he will be drain free in a week or so.

Luckily for us the doctors came to see Oli while we were with him so we got to listen in to what they were saying.  The overall message from them is very positive.  They are happy with the way things are going and although they would like Oli to stay in ITU for another 24hrs, they are very happy for him to go back to the ward at the beginning of the week, once the ward has a bed available.

I have to say that at this point I am just so happy that Oli is doing well after the scare on Friday.  Friday hit us pretty hard as we’d maybe forgotten that it was still early days and been swept up in how well he was doing.  However, all credit to Oli and the doctors, they responded quickly and did what they hoped was the right thing and Oli has been so strong, physically and mentally throughout this.  To me he doesn’t appear discouraged that he is back in ITU after being on the ward so quickly after the transplant, if anything, it has made him more determined to do what he needs to do to get back to the ward.

We must remember that we’re still only just setting out on this journey.  We’re going to have lots of wobbles, hopefully not too many lows and more than a few highs.  I think my outlook is to enjoy the highs and take care of the lows when they happen. I want Oli to feel proud of himself for fighting so hard and to add these battles to his armour and use them to attack the next lows but it really helps him and us to know that we’re not alone on this journey and that you’re all with us every step of the way.  Thank you so very much for sticking with us, it means a great deal x

Hi everyone,

While in theatre the surgeons discovered a hefty infection that they weren’t expecting to see.  They’ve managed to do what they can for now and had sorted out the leak so Oli can now be pumped full of nutrients and drugs to help his body win the massive fight that’s reared its head.

Oli has been taken back to ITU and has been put back on the ventilator and back to heavy sedation.  The good thing is that he won’t know any of this is happening.

This is a pretty scary time right now and things can change very quickly.  Not much is known about what is happening and so as soon as there are updates I will let you know.

Positives to take from this: The team have found it and got rid of a load of goo already, they are fighting it, Oli is being cared for by some of the top medics in this field, infections after transplant are not uncommon and so the team know what to do.

Nevertheless, prayers, good vibes anything is welcome.  As I said, let’s be thankful that Oli doesn’t know what’s happening now.

Much love x

Update 16.30 – Oli has been put on kidney dialysis, this should help him fight the infection.  The head doc is hoping Oli will be able to pull through.

1/12/07 10am – Heard from his parents, no change overnight, still stable.  Hoping to go and see him later.  Thanks for all of your kind messages, it’s really appreciated and it’s great to know so many people love him as much as we do.

7.30pm – Oli seems to be doing well, absolutely desperate to come off the ventilator, think they may take it off this evening if an x-ray shows good things.  The head doc dude came in on his day off today to do a broncoscopy (looking into the lungs with a little camera) with a view to suctioning up a load of goo that may still have been lurking in the lungs.  From what I can gather there was little to no goo there at all so he didn’t need to do much at all.  I think all of his infection markers might be heading in the right direction and they might have caught the infection at just the right time.  Hopefully this isn’t too much of a set back and I’m sure Oli will be back up to speed before too long.  Am off to see him tomorrow morning, more info then.

Sorry, have had that song in my head all day and it has had to come out somewhere! 

Oli has been on the exercise bike today!!! 

He managed 4 whole minutes and, much to his surprise, conducted a conversation whilst cycling.  Anyone who knows Oli, knows anyone with CF, has CF, is just plain rubbish at exercise (that’s my category), will understand that is pretty amazing and is definitely ‘up there’ in Oli’s list of All Time Greatest Achievements Ever.

His mood has remained buoyant and although I got there too late to witness it, I have it on good authority that he has been excited about all the things he will be able to do.

A slight bump in the road to recovery means that tomorrow morning Oli will be going back to theatre for a very brief operation to tie up something that is leaking very useful fluid (isn’t my medical knowledge astounding?!).  I have been told several times what the actual reason and procedure is but my brain is also leaking very useful knowledge.

This may sound like a step back and it will put him back on epidural and catheter again but it is in fact a really simple op (fingers crossed there are no complications).  Once Oli is over the sleepiness of the anaesthetic, he should be able to be tube free in a week or so.

I will of course let you all know how tomorrow goes but please be reassured that I’m not concerned about the op and so you guys needn’t be either.  I’ll let you know when to worry and when to cheer (and when to boo and hiss, just as it’s nearly panto season).