*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

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