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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