Smile Through It II: The Next Chapter

Chasing dreams, because I can

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Seeing things

Posted by Oli on Thursday 22nd November, 2007

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 

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9 Responses to “Seeing things”

  1. Sue & Mike said

    Dear Oli & Kuti

    Just felt I must say how wonderful the news of Oli is, I have been able to think of little else since we heard. Sue is all too aware of the problems of hallucinations with these drugs having been through it in the spring. I am sure Tim being there overnight will have made a big difference.

    We read your entrys on the blog the last few nights, that taken with the previous two or three days is quite simply a miracle.

    We hope that the news continues to be good. We know that these are hectic days of visits, high emotion, telephone calls etc. but this blog that is very much appreciated.

    Please send our love and best wishes to Oli and tell him that we look forward to seeing him when we get back from NZ.

    Love Mike & Sue

  2. sally said

    Hi glad he is doing ok and yes it is a mountain to climb but so worth it! James found himself seeing things when he shut his eyes as if it was really there happening which used to freak him out (and us lol). He also got very depressed convinced the op hadnt worked as his body went through various changes not realizing he now had lungs that were getting oxygen round his body. Also scaring us all with various dramas leaving us all thinking the worst whilst the drs and nurses (jason a lot of the time lol)take it all in their stride, reassuring each transplant is different but all have their own set of hiccups which they just deal with as they go.
    You all take care and keep up the fantastic bedside team you all have going and oli keep up the fantastic recovery even on the days when things dont seem so great, you will get there!!!

  3. Suze said

    Glad to hear that you are getting some rest as well Miss! Oli is so lucky to have such a wonderful lady in his life – make sure that you’re looking after you as well please. You’ve got quie a journey ahead as well! Love to you all xxxx

  4. Alice said

    I can’t imagine how odd it must be for him to change his breathing habits from years, trusting his new lungs will no doubt take time. There is no race to win Oli, you’ve done so well already and I hope you take all the time you need to adjust to such a massive change.

    As for the hallucinations, they must be scary, it is so much to take in for you guys and ultimately Oli and seeing things that aren’t there can only add to the overwhelmingness of it all!

    We all believe in you Oli, you are going to cope with this steadily and in your own time and we’re all behind you marvelling at how amazing you are, no matter how small you think the steps are, they are monumental to everyone who loves you.

    A xx

  5. sarah said

    Things after transplant can be a bit strange for all concerned.

    I am so glad Jason was there, he has been one of Peter’s nurse from the beginning in 2005 and was there when he went down for his transplant. He is a good nurse. As they all are, but Jason played a big part in our lives for so long.

    Fridges are there for food items as well as some peoples medications. Peters meds dont need to be kept cold, so we filled it as well with lots of yummy things. Chocolate trifle being one.

    Peter suffered halluactions as well, in fact he ‘saw’ a horror film being made in ITU. And me, when i wasnt there (not in the horror film though lol).

    Keep going Oli, but get some rest, and you as well K.

  6. Katie said

    I do hope that the side effects of the drugs wear off soon, it must be so scary for him. Glad that the nurse managed to help with Neve to make it a bit easier. Thoughts are still with you, and I now have lots of people on the Realbuzz websites thinking of Oli too as I keep them posted on my blog!

    Take care, Katie

  7. suzie said

    I know this bit is hard for you Oli, its not easy to breathe in a way you aren’t used to without the added bonus of hallcinations. Although its scary to you the medical staff probably see it as routine goings ons after transplant.

    Hope you managed to get some rest last night and that today was a tad better.

    Sending much love and many stay strong vibes to you, the family and K fom all in Chester. x

  8. Maggie said

    Dear Oli, what an amazing few days you have had, but I hope you were more comfortable today than yesterday and that you have managed to get some all important sleep.
    My thoughts have never strayed very far from you and the family this week, and I just hope that each new day brings more improvements and good news blogs.
    Sending much love to you all
    Maggie, Archie and Chris xxx

  9. Emmie said

    Dear Oli, sending you a big hug – it sounds like you’ve had a tough day. I’m not surpised its hard to get your mind to accept a totally different way of breathing and no longer having to fight for survival – it must wonder what the hell has happened inside you suddenly! The hallucinations sound truly horrible and are one thing that I personally have worried about before in terms of whether I would go for a transplant. Somehow coping with weird effects on your body can be a lot easier to face than weird things happening to your mind. Remember you have moved so fast that most people would probably still be half (or fully) asleep at your stage, so you are doing amazingly to get through all this. Sorry for the waffle, just wanted to say I’m thinking of you loads and just hang on to the fact that in a few weeks time all this will be behind you xxxx

    Dear Kati
    Thanks so much for keeping us updated. I’ve been thinking of you and Oli’s family a lot too. Make sure you take good care of yourself and get lots of rest – you’ll need it once he’s bouncing around back home! Lots of love xxxxx

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