Post Surgery - Days 4-7 16th Nov 2011

A few days after surgery I would say the recovery seems very swift, and Robbie seems to be handling any pain with the minimum of fuss.

One thing I would advise is that the days seem very long, as you would expect whilst sitting beside any hospital bedside, I 100% recommend you take a few things to entertain your child into the hospital. Don't get me wrong the Evelina has children's TV at every bedside, well equipped playrooms etc, however TV isn't really Robbie's thing, thank heavens we had his i-pad with him which kept him entertained for several hours over the last few days... certainly take along a few books or toys to keep your child amused.

Over the weekend we got out for a walk, on Saturday we took Robbie in his chair, along the embankment, and on to the London Eye, (Just a word to the wise, this isn't as expensive as you may think, as Robbie was in his chair he got admittance as a disabled child, and an adult goes free as a carer) It is a nice gentle ride, and the attendants could not have been more helpful when getting on and off the attraction... Really good relaxing way to pass half an hour or so. After the ride we walked a bit further then headed back to the hospital as Robbie grew tired quite quickly. Sure enough after the walk he slept for a good hour or so, and I think this first trip out really done him some good, both escaping the surrounds of the hospital, but also getting some much needed fresh air.

On the Sunday we went for a longer walk, not realising till we were in the thick of the crowd is was the armistice day parade... Gee you don't realise how busy London can be till you are truly in the middle of something like this (a pleasant site to see none the less)... Jubilee bridge was also nice with lift access to the bridge for anyone who might use a wheelchair.

Prepare for quite a lot of medicine taking whilst in the hospital, at one stage they were running out of places to put cannula's in... post op Robbie had a cannula in his right arm, left arm, ankle and groin, that said these were pretty much removed individually over the course of 3-6 days after the op. As for tablets Robbie still continues with his regular 10 tablets a day (throughout the course of the day) on top of this he was given paracetamol (pain relief), chlorophenamine (relieves itching on the wound areas) and liquid lactalose (to prevent constipation).. all of the above were administered in tablet form, which Robbie managed without too much difficulty... on top of this of course Robbie was given regular shots of antibiotics through his cannula until      day 6.

On day 6 came the bit we had all been dreading the removal of the dressings, as brave as Robbie is swallowing medication etc, he has always had a bit of an issue with the removal of plasters, bad enough having to remove a plaster from his finger, we knew taking the plasters off his head and chest was going to be a bit traumatic for him... sure enough there were several tears during this process, I don't really know of this was purely pain, or a bit of Robbie being quite chicken hearted about getting this done, Sarah was very gentle whilst doing this, and took plenty time applying water etc to ensure minimal discomfort to Robbie, basically they had to come off, and eventually this was done. Once the original plasters had been removed a temporary dressing was put on, this will come off either today or tomorrow and then the wound is left open to heal... I dare say we will have similar problems to what Sarah had when this task has to be done.

The scars were actually bigger than I had envisaged they would have been, however being well above the hairline they will be well hidden as his hair grows back in (which it is doing very rapidly - and I am somewhat jealous of this fact)

The physio Kylee also came in to see Robbie on the Monday and had a quick look at him walking around, she did quickly make us realise we were perhaps being a bit soft with Robbie, and actively encouraged us to let him do a bit more for himself (It's a natural parent thing to help your child as much as you can, but sometimes it does encourage your child to kick back and let Mum and Dad do the fetching and carrying)

Jean Pierre Lin also came to visit Robbie to see how we were all doing, and took a short video asking how we felt through the process, and what was the worst point in the process, our answer was as you would expect the taking him down to surgery and the waiting during the surgery.

Robbie also went to x-ray on the Monday to get shots done for his DBS passport, which is an information sheet advising what he has done, who to contact in an emergency, pictures of his implants etc.

We were also guided through the charging process for the power pack in Robbie's chest which charges the internal battery which in turn powers the implants... A bag of charging tools is given to you on the day of surgery, and you are advised this cannot be away from Robbie at any time. The charging process is really quite easy, and manageable... my guess is Robbie will be doing this himself, as he loves gadgets and this had taken his interest immediately (Of course this will be supervised and there is a tool to check how charged the battery is)

We were also given details of Robbie's next three follow up appointments which fall at 1 month post op, 2 months post op and 3 months post op... so this is good to know these in advance and gives us plenty time to plan for these journeys in advance.

I think the important thing I have learnt over the course of this week is the DBS is not an instant fix, and this journey is going to be ongoing for several months, possibly a year or so till we see the full benefits of the surgery, there have been small changes however this may well be a result of the medications given, or simply the honeymoon period with the operation being so recent, so it really is a wait and see process, that said I am happy in that the follow up appointments etc will involve no further pain for Robbie, he is through his sore part of the process and he came through it with amazing bravery, he really has made Dad very proud and we are positive this will help given time.

On Tuesday we were allowed home, 7 days after the op... Robbie wanted this, in fact we all wanted this, it was difficult leaving our teenage son Rhys at home during this time, it was difficult me and Chloe having to go away home at night back to our digs, it was difficult for Mum and Robbie being left in the hospital all night... In general terms we are just not used to being apart as a family, and this was hard, but hey we got there and we are all back to our normal surrounds, and creature comforts, we are back together as a family again, with the usual fights, laughs and occasional tears, but most of all we are together and safe in the family home... now this is what life is all about.