Dear all,
Sorry it has been a while, in between to and fro and somewhere in between I have
wrestled the computer back from Bryn, and found a space to write!
Keegs operation was last Friday, 27th August.
Thursday was spent in the hospital together, and we had a private room. We both
slept after 0200 in the morning..
Friday. The operation was a success although it really was not pleasant seeing
him post operation. The anaethestic went well and he was alert and feeling a
great deal of pain. Well that is positive compared to last year!
Weekend. Each day he has got stronger and more alert. He still is having spasm
but the pain intensity is already less.
It has taken 3 days for the Baclafan/Lioresal to get into his system.
His starting dose is 25 micro grams into the back. The pump was programmed
and running as he left the theatre. The Medtronics representative can change the
dose to 0.001mg delivery!!! Amazing.
It can /could take another 6 weeks to get the dose right...the ultimate will be
to reduce spasm, thus reduce the pain and keep his alertness.
Monday and Tuesday. He is now back in the ward and is sharing with three other
people.
He is running an infection and Doc Snykers really wants to get on top of this
before releasing him. His attention to detail is amazing.
This infection is very resistant to antibiotics and has to be attacked. This is
so that Keegs does not reject his new "hardware"!
So what more can I tell you? Not much - spates of patience are needed. There is
nothing worse than biding time.
When do we get back - as soon as Keegs is back at 201 and settled .....
Later.
Love me
The vital appointment with the surgeon to see if Keegan is a candidate for
the Baclafan pump did not happen. Too reasons - traffic was a nightmare and I
was 10 minutes too late and the doc had early surgery.
Double whammy and I am left very frustrated with it all. Especially as we got
all the way to Milpark before finding out.
Having been lucky enough to phone him in the theatre, he said that I could bring
Keegan for another consultation - Tuesday 1700 - again all the way across town.
Of course this means that I will not be at school on Tuesday and reports are
looming. I have entered my Art reports but not the English, they have also NOT
been checked before printing.
Tendeka please can you send a class list for !A, !C and 1D. I do not have my
record book here. Is it correct that I write in a word document and then you can
copy and paste?
Should Air Zimbabwe not be late again - I would hope to be back by Wed night -
surgeon decision pending. In hind sight we did well not have this happen before
- doesn't make it easier that it has. I also need a lift home - can someone
fetch me - my car is at Brigette.
Sorry again.
Exam corrections have been done with Form 1 and they have their marks.
Heather/Dave although they have their activities to do and my keys are in my
pigeon hole - they can also do class reading....I also seem to remember that
there are some double periods to get through which is more of a problem. Cant
think straight anymore.
KEEGAN UPDATE: EARLY JULY 2010
Dear all,
Again, I write this as I think…. Sorry, the rollercoaster continues…..
I have struggled and procrastinated over this letter/update for 2 months. Basically, because in the last two months we as a family have had to accept, understand, realize that this new lifestyle of the last 16 months, is for life. I have found it extremely hard to be positive and to write to you at all. I have hit brick wall after brick wall in getting to this new understanding. It is easier to interact with others than to face uncertainties and fears. The second year has been harder to come to terms with, rather than the first. So too, are we all old news.
For us as a family unit, we cannot make it go away. We cannot get away from it. The updates that I give you are old news, same news, BUT, Keegan is better each passing day or month.
It is not going to be a procedure like appendicitis or pneumonia where drugs or an operation can fix it. There is no quick fix.
But I do know that he will NOT be like this forever. From interacting with other stroke patients and people who have suffered from accidents there is always progress….always minute and positive steps… I do not know what he will be like…..I can no longer tell you, but I know he will not be like this.
The Langley family, however, continues on its own roller coaster ride. Our journey is an ongoing, never ending out of control feeling that is emotionally draining and forever uncertain. No – one can walk in our shoes or do it for us – but we certainly thank and appreciate everything that everyone does to hold us up, support us and be there for us – especially when we are feeling vulnerable, shaky and exposed.
The support network is huge. My thanks to you all.
Keegan now ….
Keegan is fine and getting stronger all the time. His colour and weight (51kg) are all becoming more and more stable.
The Neurologist last week was pleased with all of these attributes, but also his increased level of alertness. He appears to listen and absorb what is going on around him and is able to double blink for a confirmation. Which is fantastic – providing he is not in spasm.
The interrupted brain signal from the injury causes these spasms. He has no control over them. They can be set off by giving him a fright, sudden movement or a stretch of the limbs that has extended him too far. Basically, this is any situation where he feels out of control or where something is unexpected.
The spasms start and spiral up the left side of his body and can start anywhere on this midline. From observing him, the most painful are those that start in his back and extend both sides and end in his neck or toes. The severity of these have now pulled his back out of alignment and have corkscrewed him into an s bend and started pulling his mouth and jaw downwards.
BACLAFAN PUMP
When I return to JHB I will be seeing the Neuro- surgeon so as to discuss and book Keegan for an operation so as to insert a Baclafan Pump. There is no other route for him to gain progress on this unpredictable uncertain journey. There are no guarantees either.
In layman’s terms – cut, open and insert a “Nugget – sized” tin that has the Baclafan antispasmodic drug inside. (It is said to be as powerful as Heroin should there be a blockage and he has withdrawal symptoms). The pump is inserted under the skin next to his belly button. The tin, with 8 year battery life and computer chip, has a catheter attached and feeds the drug directly into his spinal column so as to interrupt and stop spasms. Sounds easy right? Definitely going to be expensive, definitely going to stretch the Trust Fund, and definitely going to be a new road to travel on…..new Luna Park ride!
I am still getting my head around the risks, and complications that can happen whilst he
has the use of the pump. Those of you interested – www.medtronics.com or I even tried Utube.com and inserted Baclofan pump in the search.
If the Baclafan trial is a success, then we will stay for approximately a week in Milpark to monitor and stabilize him.
The next million dollar question – when? I have to wait for the appointment to see when the surgeon is free. I also know that there will never be a good time, this accident has taken its toll on everyone, family, school and friends alike.
However, to have reduced spasm and be relatively pain free will be a huge relief for Keegan. (Try to imagine child birth pains intermittently all day for the last 16 months will give you a fairly good idea.)
So to be positive, if this all comes off, then it will be time to try and regroup as a family.
No matter what, I promised him that he would come home, and I always try and hold to my promises. We also cannot make further plans until we try this new lifestyle on for size 24/7, and back in Zimbabwe. We have to begin where it all started. This dual life is driving us insane too.
However, so too is it getting harder and harder to say goodbye, as he is more aware each time that we come back to Falcon. He even managed to get the Hewitts to stay longer for their visit two weeks ago. Troy Morrow had him smiling as they were sitting in the sun together reminiscing. So yes, the non verbal communication is happening but the speech is not – not yet.
So now you know as much as I do. Not a lot.
How long is a piece of string?
This time I promise when I get back I will update you.
Thank you again, everyone.
Sal Langley
KEEGAN UPDATE: JUNE 2010
I picked up Sally from the airport yesterday evening so have not had a lot of
time to talk but here is the basics. She will today get 100% back into school
marm mode so please don't expect too much from her too soon!
1. Neurofeedback: the lady did a trial last Sunday, she felt there was
significant "activity" to be very encouraged, he is a good candidate she thinks.
However, she also reckons the extent of pain and muscle spasms Keegan is
experiencing will considerably negate the efficacy of neurofeedback at this
time. Therefore, she will wait till after the baclofen pump op before
continueing her trials, apparently she wants to do 10 sessions before doing a
long term evaluation. So, I guess, this is pretty good news.
2. Neurologist, Dr Anderson visit: this was on Monday. He was impressed with
Keegan's level of awareness, better than last visit in April, and was quite
encouraged. However, showed concern at level of spasticity particularly the old
left arm and the left leg which is still a big problem. He and Sally have made
the decision to go ahead with the baclofen pump op: timing of this still needs
to be confirmed and this will only happen once Sally has taken Keegan to his
neurosurgeon Dr Snyckers set for 9 July which is only a couple weeks away.
Dr Anderson felt is would be a good idea to get Keegs home for the August school
break but this needs to be weighed against the importance of gettiing the op
done. Mike and Linda (Sal tells me) have cancelled their overseas trip so that
they can be here to help in any way they can over the complicated
August/September period where Sally has to deal with not only Keegan (either
here or in JHB depending on op timing) but with Drew and Bryn who face major
exams in October. Very good of Mike and Linda to offer this support. I am away
continuously from late July through late September so cannot help at all.
Further to the op, etc, Dr Anderson says we must continue use of botox in the
upper limbs, as he is adamant the pump will not work on the upper limbs too.
Sally is very upbeat, says Keegs level of awareness in general is considerably
better than a month ago when she last saw him.
So, overall, I guess mostly encouraging stuff. I just wish we could have the op
tomorrow, neurofeedback the next day, botox after that, all done, fixed, come
home, or whatever!! Oh, for a perfect world.
Thanks for all your continued support
Ade LangleyI
Dear all,
I am sorry it has taken this long to update you all.
Since the middle of January Ade stayed with Keegs for 10 days. The two of them
had a marvellous time, hugging and cuddling on the bed or the exercise mat, and
interacting. Ade positively believes that there was huge response and reaction
to his visit. Everyday there would be glowing reports and changes in his body
language to communicate non verbally to everyone. It is a funny thing to
describe - a warm feeling, a quietness and an unspoken word....... but most
definitely there.
Armed with this knowledge (and I should have known better|) off I went to see
Keegs at First Fixture Free weekend. Unbeknown to me he had already started an
infection of some sort. By Thursday it was looking horrible. The nursing staff
checked out the normal things like
urinary tract infections and nothing there. With a spike in temperature from 36
- 39 in twenty minutes he was not a happy bunny.
Keegs was medicated quickly and quite zombie like for 3 days before he slowly
slept it off and starting to get back to normal.
Monday of course I flew home but at least he was on the up. Ade should have a
great visit when we rotate again.
In conclusion, I definitely believe that there is more interaction and more
participation involved in all his rehabilitation and especially in the quiet
times that we share.
Keegs gave me a fright as his right arm suddenly moved of it own accord in a
flexed movement on Monday, even so I believe it was a reaction to his arm
position rather than a conscious controlled movement - but hey if he can do this
the connection means that it is starting to happen. It just may - as always -
take longer than we anticipate. Again it is in Keegan's time and not ours.
Little things eventually mean a lot and often.
Thank you everyone for your continued support and patience. It is so difficult
to describe these things if you have no experience of what I am going through,
and of course one always put our own interpretation on what the situation is.
But thanks - you all keep me going too!
Best wishes
Sally Langley
A minor setback, but then the steady progress continues…..
Having shown tremendous progress over the past five weeks, Keegan quite suddenly became un-responsive and very dopey, with increased muscular spasms. It was assumed by staff and therapists that this was due to changes in medication prescribed by the neurologist. He said that the effects should wear off as Keegan adapts to the new medications, however he felt that the changes were a little more than expected. Accordingly, he recommended Keegan be taken for a CAT scan.
This was done on Friday 16 October. The consulting neurosurgeon, Dr Snyckers, said that the scan indicated the VP shunt was blocked and needed urgent attention. This shunt is inserted internally, and drains excess cranial fluid from the brain to the stomach. A blockage therefore leads to increased intra-canal pressure.
So Keegan was re-admitted to Milpark Hospital on 22 October. The blockage was cleared and the shunt re-directed from the stomach to the muscles of the heart, a relatively common and uncomplicated procedure Keegan was kept in the neuro ICU for four days.
The bill for this ‘uncomplicated and straightforward’ procedure is $10,000. A stark reminder of the necessity of keeping the Trust funds in a healthy position at all times.
Happily, after just 24 hours back in his own bed and the comfort zone at 201 Eccleston Frail Care Home, Keegan is already showing huge improvement in general awareness and is very relaxed and responsive.
At worst, progress stagnated for 2 to 3 weeks whilst the shunt was blocked, but all indications are that he is quickly catching up for lost time.
And so, as each new bend on this long road unfolds, please never let up in your positive thoughts and prayers.
Thank you.