Smile Through It II: The Next Chapter

Chasing dreams, because I can

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Oli does the truffle shuffle

Posted by Oli on Tuesday 4th December, 2007

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.

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16 Responses to “Oli does the truffle shuffle”

  1. Bruce said

    Excellent. Good luck =)

    x

  2. Alison said

    Good luck with your interview – if only they knew!!!

  3. Teresa Jones said

    K you will knock their socks off you will be a great asset to the course. Please send Oli my love xx

  4. Emmie said

    GOOD LUCK KATI!!!! I reckon you’ll sail through it :o)

    Emily had exactly the same situation with the ITU staff not giving her Creon – I’m surprised no one has got them to understand that CF people can’t digest fat without them. It caused Em really bad tummy problems too. The procedure that people pay for really does work though, so it might make him feel better if they do it.

    I sent him a card today that I made, hope it makes him smile! Can’t wait to hear you two are back together in your little flat! xxxxx

  5. Anders said

    Keep on trucking Oli. My card is in the post too. Give Oli a kiss from, it’s a hetrosexual one, like the french do.;)

  6. suzie said

    How infuriating is the creon thing…..arghhh!! Good to see things are on the right track and that Oli managed to truffle around for an hour.

    Good luck with the interview K.
    xxx

  7. Alice & Joe said

    Thank you and GOOD LUCK!!! Now winging positive thoughts towards you too! xx

  8. Gary and Suze said

    All the best for today babe, you’ll be fab! xxx

  9. Liz Upton said

    Good luck Kati – with everything you have on your plate at the moment I’m sure an interview is the last thing you want to be doing! And it’s great to see that Oli is keeping up the good work. Ah, the Goonies. Happy days.

  10. Jean Hunter said

    Good Luck Kati with your interview, I guess that’s the last thing you want to go through – anyway my dear I’m sure you’ll do well. Thanks for the update. Love to you both, and a big hug for Oli. Christopher took a music exam yesterday morning and then Christopher and I went to Guildford Cathedral for a concert which Andrew was performing in. You were all in our thoughts and prayers. Keep up the good work Oli, Lots of Love Jean and the boys xxxxx

  11. Emily said

    Thanks for the update K, my you’ll pretty much be able to start a medicine course after all this! 😉 As Emmie said unfortunately lack of creon in ICU happened to me at first too…stomach tends to seize up after a big op anyway with CF which won’t have helped. It’ll all start working again in time though. Big hug! xx

  12. Linda & Ian Rowe said

    Thanks for news Kati. Big love to Oli. We think he is doing tremendously well. Wishing you every success with big interview. They’d be bonkers not to have you. You are a very bright shiny thing! x x x

  13. sandy said

    Its good to hear he is still slowly progressing…. Poor Oli not being given creon, he must have really suffered.. Hope the procedure works …..
    Good Luck with the interview today! Im sure it will go well! x x

  14. Frizzymum said

    Hugs to Oli and best of luck to you for tomorrow. If you need any references I reckon there’ll be a few dozen grateful blog-addicts queuing up to help! Glad to hear the Creon situation is being sorted – only sorry it’s caused so much discomfort in the meantime. Xx

  15. Jean Hunter said

    Hi Oli – Christopher was really made up with speaking to you yesterday, he was smiling for the rest of the day, and his going into school today to broadcast the Godparent news!! Sorry I missed you ie Mrs Hunter, Junior, Lots of Love Jean xxxx

  16. lorraine and steven said

    great to hear you are wireless so is our computer but its a bit slow! – you seem to have the monopoly on speed so keep up the great recovery – thinking of you Lorraine steven Grace and samuel xx

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