Three Weeks On – 28th Nov 2011

It has been a rather good week overall, started last week when Robbie was working on some homework we had arranged for him via the school, my findings were rather enlightening on just how frustrating Dystonia can be, what I found very early in the outset of the week was Robbie could manage his work mentally without any issue, although his main problem seemed to be in being able to actually write down his answers, in essence Robbie knew the answers to the problems, but actually managing to write the answers down caused him great problems, and he found this very frustrating. At the early part of the week Robbie really struggled to get the answers down on paper, however really encouraging later in the week was he is finding this easier as the week went on. It is the case he now seems to have more control over his arm and hand movements, and his work improved dramatically towards the latter part of the week as he practised more and more.

We also attended a meeting at the school at the end of the week to see about Robbie going back to school, in attendance were his support teacher, and a couple of senior teachers at the school, and overall it was decided (as we had hoped) that Robbie would return to school on Monday (today), doing a couple of half days initially to allow us to gauge how he coped, then with a view to getting back full time later this week... I have to say Robbie’s school is a mainstream school, however they have been very supportive and accommodating throughout his time at the school, it really is a place where I can drop Robbie off in the morning and know it is a place where he is safe and cared for. They also have a support plan in place looking at ICT specialists, and Robbie’s day to day needs.

Overall I am now confident we are seeing changes in Robbie, he certainly is using both hands in a co-ordinated fashion more than he was ever able to do since the dystonia started, he has not complained of pain caused by dystonia since the DBS took place, (he did complain of a sore neck the other day but I think this was more to do with the way he was sitting on the couch rather than any dystonic pain), however walking is still proving to be a challenge, and Robbie still needs a hand taken when he walks although he is still trying to go unaided with little success thus far... that said he seems to be getting a bit more stable and we continue to push him where possible to keep him moving and we try and make him be as independent as possible, again though he is managing to get about a bit easier now than he was at the start of last week so again I do believe there is improvement being made.

I feel deep down this surgery has certainly benefited Robbie so far, and I am confident as he learns to find new ways to use those muscles no longer trapped in dystonic postures he will improve further, it is so exhilarating and miraculous to see Robbie improving day after day, after so many months of watching him deteriorate and getting worse, every small improvement is a true blessing and a major step in the right direction for us.

In summary, the benefits so far which are clearly visible to me now, would be the correct posturing of his right foot, which happened since the surgery took place and the absence of the dystonia related pain, again since surgery. Use of his hands and fingers is certainly improving, with much improved control, and much less in the way of dystonic posturing, he is using his right hand now something he never did before, walking is improving albeit much slower than the arms and hands, again this may be a confidence thing as when he falls he has great difficulty getting back to his feet. Charging and checking his battery unit are firmly Robbie tasks now although Mum needs to help him place the charger and use a scarf to hold it in place (maybe because he seldom sits still long enough to keep it in one place!)

So if you were to ask me three weeks down the line would I recommend DBS, I would say with absolute confidence YES... this is certainly the way to go.

Robbie’s scars are healing well, and pain from the surgery no longer seems to be a problem, he has had no pain medication for over a week now... most encouraging of all, he went to fight with his teenage brother Rhys over the weekend... surely a sign things are getting back to normal !!! With Christmas only 4 weeks away we are determined as a family this will be the best one ever

Two Weeks On – 22nd Nov 2011

Here we are then two weeks ago today we were very stressed, however two weeks since the operation now and things are much easier. 

Robbie is recovering well and the scars still are looking clean and healing well. Robbie hasn’t complained of them being sore much at all, although you can see him scowl and grimace sometimes when you take his right hand (his battery pack is obviously still a bit tender)

Our main focus has been to make sure Robbie is getting into the habit of charging himself every day as we are keen to ensure this just becomes a routine for him moving forward, and also making sure he takes a little exercise and fresh air daily to try and keep him on the move.

We are contemplating putting Robbie back to school next week, in order to get back into a normal routine, he got a lovely surprise from his classmates through the post the other day, when a big A4 envelope came through the post, and it contained about 30 handmade get well soon drawings from each of the pupils, some of the messages in the cards were absolutely fantastic to read out to him, and again as I read the cards out to him, all I could feel was that oh so familiar lump building in my throat, we were all really touched by this kind gesture from the school, it truly is unbelievable how many people are wishing the best for Robbie. We also picked up some work for Robbie to do at home whilst he is off in an effort to help him keep in touch with studies.

As for Robbie in general, it is still very early days but we haven’t seen many further changes as yet, but it is as I say still very early days, on the positive side the foot which he wears his splint on still seems to be much better postured than before his surgery, however on the downside he is still having a problem with his other leg staying very stiff and he seems to be really struggling to bend this, this is giving him major difficulties when walking and even more so if he falls as he really struggles to get up again... but as I say very early days as yet so we are not too disheartened. I think he is still a bit tender where his battery pack is placed in his chest, so again this will probably still be having an impact on his ability.

As for myself I have again felt a bit of a real mix of emotions over the last few days, probably down to my own impatience, and sometimes I feel there is a change, and other times I question myself if I am kidding myself on (self doubt is a problem), I am pretty sure there have been small changes, although being with Robbie 24/7 I know I am probably expecting far too much far too soon, and may well be the last one to click on as the changes are slight.

I have included a scan of Robbie’s x-rays post op clearly showing both the implants and power unit, I still find these remarkable to look at a week after I got them, and thought they may be of interest. After the op all parents are given an A4 laminate referred to as a DBS passport, it is basically an official notification from Guys and St thomas NHS foundation trust advising has a rechargeable activa RC deep brain stimulation implant, date of surgery, and then goes on to state the lead targets in the area of brain where they are positioned. The passport also gives some advice i.e. avoid contact or close proximity to magnets, no MRI svans to be done, and surgical advice guidelines for in the event of an emergency, the back of the passport contains the contact details for the CMD team for emergency contact. 

To be honest I have copied a few of these, one sits in the glovebox of the car at all times, one in his charger bag, and one is ready to be given to the school upon his return.

Overall he is still doing really well, and is still happy as ever

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.

Post Surgery Day 2/3 - 11th Nov 2011

Here we are then 3 days since surgery, the healing process has been very up and down, at some moments Robbie seems to be doing really well, and at others he still seems quite poorly... I suppose this is only to be expected so soon.

The bandage on his head which has caused so much irritation has been the main focal point of his discomfort, although for obvious infection avoiding reasons this has to stay in place, this bandage has gone through many stages from a professional, snug fitting tight bandage on surgery day, to a slacker, less snug fitting headband, and eventually to a tired old bandaged which touched his head in some places and not in others... to the extent Mum decided she would try and make it a bit more comfortable for him yesterday, and Robbie himself stated... "You have made me look like Alladin" in a non too pleased way... overall we had a good laugh at his comment, and his usual dry sense of humour... One thing Robbie has retained throughout this ordeal has been his wry wit.

Eventually today after telling the consultant his bandage was really itchy, and complaining about it several times, a compromise has been reached where Robbie has now been given a "Tubex" type bandage on the firm agreement between him and the nurses that he promises not to scratch his head... Or the old bandage will have to go back on... He seems much more comfortable with this for the time being.

Today has been the first time he has complained of his "battery" being sore, he is of course referring to the rechargeable battery which has been placed on his left shoulder, under the skin, just above his upper ribs. This is quite pronounced and noticeable at this stage, but I dare say this may well be down to the swelling within the fresh wound.

Overall thought we are coping well, the Doctors are happy, the nurses are happy so all is good on that front... The painkillers seem to make Robbie's pain bearable and he complains only a little, although you can see in his face sometimes he is uncomfortable.

Couple of interesting facts we have witnessed so far, although we are still at very early days, Robbie normally wears a splint due to the fact his right foot is affected by the dystonic posturing of the calf muscle pulling his foot up towards the inside of his knee, initial indications seem to suggest (or it certainly appears to us) this does not seem anywhere near as bad as it was, and he now seems to be adopting a normal posture.

The second interesting early change we have seen is Robbie always had a problem co-ordinating both his arms together, ie when he was writing he needed a support to hold a piece of paper in place whilst he wrote with his left hand (the right hand couldn't hold the paper at the same time)... Interestingly when he was filling in a drink chart today (which the nurses keep to monitor fluid intake) - he immediately held the paper with his right hand, and wrote with his left (He did keep losing grasp of the pen, but managed to pick it up) whilst still securing the paper in position with his right hand... this is a definite change to what he was doing prior to DBS.

I think it is also pertinent to remember these changes are likely to be slow, as he has adapted ways to deal with things he couldn't do prior to DBS so it will take a while to learn new techniques and skills which he maybe couldn't manage prior to DBS.... not to mention he has only had basic programming done on the stimulators at this time and I am sure as the review visits come over the coming months there will be further elements of fine tuning to be done... Yes initially we are very happy with his progress... what a wee star !!!

Post Surgery Day 1 - 9th November

Robbie had a bit of an uncomfortable night overnight, probably not helped by the amount of wires and monitoring machines he was hooked up to, that said the morphine meant he was drifting in and out of a bit of a daze.

He did complain of pain, when the drugs were wearing down or losing their effect, even though he was on a slow release system of the drug he would often wake and complain of pain. This seems to come across as an itch when you watch Robbie, it is like he was trying to scratch his head... (This may also be down to the fact he has a large bandage covering his entire top half of his head, and in the hospital with it being so warm I dare say he would have been sweating beneath this hence you can certainly see there would be some discomfort)

It was very much a standard post op day, and as you would expect there really was nothing much happening except for the nurses coming in every hour or so to take observations of temperature, blood pressure and the likes.

Even after this surgery the i-pad was being used for short spells, Robbie playing his beloved fishing game..  We were advised Robbie was to be transferred to the Evelina the day after surgery, however due to a lack of bedspace this has been put on hold till tomorrow...

Overall I think the whole family Dad, Mum and Chloe are really feeling the strain, and tiredness is kicking in to us all.... but hey on the positive side our little lad is on the mend from the op and this makes it all worthwhile.

Certainly it is difficult to tell at this moment in time to see if the surgery has made any changes to Robbie's dystonia thus far... You do find yourself looking at his posture etc, and asking yourself is he doing anything different etc etc etc, however I have decided for the interim to solely concentrate on getting him to recover from the op, and get himself fit again before I analyse this any further. The main thing is nothing has changed, he can move all his limbs, memory is good and he can speak etc as normal... these are some of the things that really worried me post op, but all is well so far

DBS Surgery Day – 8th November 2011-11-09

After what seemed like a very long night, where every hour on the clock was seen the run up to the surgery proved to be a very worrying affair, every time I closed my eyes, I saw the surgeons knife, heard the drilling in my head... of course the thought of what lay ahead interrupted any sleep I was ever going to get with the natural worries and concerns any parent would have.

After watching the clock for many hours, I woke my Daughter Chloe at 6am, in readiness for our drive to the hospital at 6.30am, Robbie wasn’t due to go to surgery till 8.30am, however with the London traffic and all, there was no way we were going to run the risk of being late, or caught in traffic, I wanted to be there well in advance to spend a bit of time with Robbie... basically I just wanted to be with him and get a cuddle before he disappeared anywhere.

The surgeon had been round and spoke to Mum the evening before going over the risks involved as you would expect in any type of surgery, and she had decided not to stress me further and go into the fine detail of the conversation she had with the surgeon the evening before, until such time as Robbie was en route to theatre. True to their word the nurses came to the room around 8am and advised he would go down to the pre-op room at 8.30am, it had been pre-decided Mum would be going into the anaesthetic room, whilst Robbie was put to sleep, (thank goodness, I really am chicken hearted and don’t handle these things well). Surprisingly we all got to go down to the post op area so this helped to relax Robbie and also helped the family also being all together at a time like this was important for us.

The surgeon (Richard Selway) came to see us and talked us through the procedure yet again, and asked if there were any questions or concerns we had, the answer was a simple no, we had researched this procedure so much post op, I think we had all the answers we needed. The surgeon advised Dr Jean Pierre Lin would be present during the entire procedure and he would speak to us after the op was completed.

The team took Robbie away at 8.30am to be put to sleep and allow the op to start... seeing him being wheeled through the swing doors left an enormous lump in my throat, and to be honest I was struggling to hold it together... Gold star to Mum who seemed to be being much stronger than Dad in this situation (there again she maybe could just hide it a bit better than me!)

Mum returned and that was it, he had drifted off no problem, Mum even advised he had held his mask on himself to help him drop off, and there were no issues... this was the worst time, I had conflicting thoughts going on, on one side there was the relief this was it, the DBS was actually happening, and on the other hand there was the natural dread of your child having any op.

The procedure we were advised could take several hours, and the reasons were many fold, most of all though as the team need access to a MRI and PET scan equipment throughout the procedure to help plot the placement of the stimulators, these machines which are available to the neurology team at all times, but obviously in the event of an emergency coming in to hospital it may be necessary for the patient to wait till any emergencies are dealt with prior to the patient.

Around 2pm after several hours where the atmosphere is tense we were advised the Op had been completed and Robbie would be moving to the recovery area very shortly.. we hurriedly rushed down to wait on Robbie coming round.

He was in recovery albeit he was full of morphine so very vaguely aware of what was going on, however he did recognise us and gave that infamous grin, which felt really good... the Dr’s from the Evelina were with him programming the implant and taking initial readings, ensuring all was working and live... It was !!!

Sarah from the Evelina was also there, and she gave us the DBS bag we need to keep with us at all times, not really sure what this is all about as yet, but the one thing I did recognise was the charger for the battery pack which is in Robbie chest... we are to be educated on this once Robbie is transferred to the Evelina.

So in all there was a huge sense of relief at the back of operation, and regardless of how much help it gives Robbie, you cannot help but feel relieved the stimulators are now in place and I honestly believe we are through the worse of any procedures that may follow... the King’s college staff are amazing, the team from the Evelina are amazing, and as parents we have seen the support from many family and friends we thank each and every one of you for this...

DBS - The night before 7th November 2011

We set off from Scotland yesterday morning and our plan was to stop off at family in Sheffield in order to break up the journey, instead of the straight 450+ miles into London. It was a good distraction for us all, and it helped take our minds off the reason for our journey.   

                      

We set off from Sheffield at 6am this morning, much to Robbie and Chloes dismay, they have never been early risers and I think they were probably in shock for the first hour or so...

The appointment letter from Kings College Hospital clearly states you must call at 9.30am on the day, to ensure there is a bed available, and my stomach was churning from about 8am with the fear they would say there were no beds available, and the planned op would be delayed... It transpires my concern wasn't necesarry and his bed was indeed ready and waiting.

For any of you who are going to experience this op, I would say it is difficult immediately as once you have decided to go ahead with the procedure you will find yourself worrying about things that could prevent the procedure from going ahead, will your child be ill, or have a temperature, or runny nose at the time the op is scheduled for?, will the hospital not have beds available? etc etc etc... Alas it transpires we have experienced none of the above, and indeed the indications are Robbie's DBS will go ahead tomorrow morning.

Are we nervous? You better believe it!, but when you see him struggling more and more each week we need to do this. My hopes at this moment in time are first and foremost we get Robbie through the DBS without any issue and with minimal pain to him... Hopefully a quick healing time, at least then the really scary part of this trauma is over... As for the success and fine tuning of the stimulation, it really is a wait and see, time will tell situation... And I got all the time in the world for this brave little guy.

That said Mum is at the hospital with Robbie tonight, to be honest me and Chloe made a swift exit when we discovered he was getting bloods taken and a cannula fitted!!!

At the end of the day, it is very clear when it comes to the crunch there is no one quite like Mum to calm you down and you really need a hug... Thanks Jane for being a wonderful Mum to all our kids, they know they can always turn to you in a crisis and you will be there x

Less than 12hrs to go, and I cannot help but keep looking at the clock, guess it's gonna be a long 24 hours ahead...

One week today – 1st Nov 2011

Well after what seems like months and months wishing for the time to fly by, it appears my wishes have finally been answered... I sit here this morning, with mixed feelings of dread and anticipation of this time next week, when at long last Robbie will be getting his implant.

I thought I had experienced extreme stress on the run up to the eventual diagnosis of Dystonia, I then again felt I had reached a further extreme level of stress as medications were tried, and seemed to work briefly, and then began to lose their impact over time, but this last week or so my stress levels have risen to a completely new level yet again !!!

You wake up and the op is in your mind, you eat and the op is there in your mind, you go to the gym and the op is there in your mind, and again you go to bed and your thoughts are of the op yet again. It is like being on a rotating wheel, and the thought of the op is all you can focus on, it is always there, just like a scar you carry it with you at all times, there is no escaping the images your mind conjures up on what you think will be, and deep down you cannot help but believe all will be well, you just need to stay strong and get yourself through this last hurdle.

As for Robbie, we have talked further about the op and he is still just taking it in his stride, to be honest he is more concerned about “all the travelling” he will have to do... He has now decided after our drive to London last week, he dislikes travelling with a passion... If that is the worse of his concerns we are happy to stop off halfway this time we go down to give him a break...

In many ways I am glad Robbie is so young, and maybe doesn’t fully understand what the surgery involves as yet, ignorance is bliss sometimes, that said he will be sedated through the worse of the pain, so this way he can just focus on recovery, and kids do have a much quicker recovery rate as they tend not to feel so “sorry” for themselves, they are more resilient than us “adults” they tend to pick themselves up and get on with it.

No, on reflection it is certainly Mum and Dad (and Big Brother Rhys) that are stressing the most about this out of the whole family unit, but on a positive slant a couple of weeks down the line and we will be close to coming home, back to the nest as it were, with this procedure behind us (Guess I am beginning to do that wishing for time to pass thing again!)

Another strange thing is how the simple things in life suddenly become more important, the kisses, the cuddles and smiles mean the world to me now, music and lyrics are another thing I now look at and listen to a bit more intently, lately many songs keep hitting my mind and striking chords that I can relate to, probably as an example I would probably say Coldplay’s “Fix you” will now be a song that will always bring me back to this moment in my life.

We were back at the Evelina again last week, going through some of the mobility assessments again, it was really good to see the team, they truly are a skilled team, and really know their stuff. You will be really impressed if you ever get the chance to meet them.