Life and Death Pt.2

I officially decided to re-start at work on January 3rd and things have been right back to usual and pretty hectic. Personally, I’m always very torn by this as I love working with both my clients as well as other members of the Multi-Disciplinary Team (all those who work with/around the client e.g: parents, teachers, hospital staff etc.) but equally part of me wishes that it wasn’t so busy and there were not nearly as many children in need.
I’m going to concentrate on 3 clients for this entry - 2 great stories of rehabilitation and the unfortunate passing away of a new client.

M is a Christmas/New Year miracle. Period.
To re-cap on the info I gave in a previous blog after I initially saw her a month ago -
M is 6 years old and has been in hospital for almost 2 months. She has had multiple cerebral infarcts (stroke) is sickle cell anaemic and is severely malnourished. The day before I saw her she had a convulsion (which are said to not be common for her) and her NG tube removed (why, I have no idea - I’ll get to that in a mo)… she is not particularly alert, has difficulties with mouth control (M has clenched teeth the majority of the time), cannot support herself at all physically and seems to have little to no understanding of spoken language…M was not safe on any liquid - not only does she have very limited movement creating difficulty to give her anything orally, she had no swallow on a small amount of water and one day I came in her mum had just given her a small spoon of very thick medicine (like a gel) which is for her oral infection - she had an incredibly delayed swallow with very gurgly, heavy breathing ( a sign things are trapped/going down the wrong way) and the majority of the medicine seeping out of her mouth over the next 10 minutes or so.

Come January the 4th and I can hardly recognise the child sat independently in front of me. I’m actually so blown away I almost immediately cry. I reach out my hand and say “habari” (how are you?) and M moves her hand towards me slowly and responds “mzuri” (fine). Not only is she independently supporting herself and beginning to move her limbs but her understanding and spoken language is coming back with mum reporting she verbally requests toilet, water, food amongst others. One of the most noticeable things about M is she has put on weight and is looking much healthier - she was taken off an NG tube when her condition was getting better and I assume they trialled feeding her and all was well and she continued to improve. Watching her eat and drink without any difficulties, a strong prompt swallow present on all textures and Mum indicating that she has none of the difficulties of which I previously explained lead me to tell a very happy mum that I could now leave them alone! I went through M’s records as well as asked mum/staff if anything was changed whilst I was away - maybe different drugs for example - NOTHING. She has literally miraculously gotten better without any change to treatment, which in essence was palliative care. I couldn’t be happier for a beautiful little girl and a very hard-working mummy.
(I should have some pics to put up next week)

Mr O is reaching for the stars
Another previous client re-cap -
Mr O is a lovely young man (32) who approximately 6 weeks ago had a stroke. He is exhibiting global aphasia (difficulties with both receptive and productive language) with very common characteristics such as word-finding difficulties (causing non-fluent speech) and some fluent unintelligible jargon-like speech. He has an unbelievable brother who is looking after him and takes notes at all meetings.

The last time I saw Mr O, at the beginning of Dec, he had come along great guns in the month or so since I first saw him and around 10 weeks since his stroke. Alongside strategies that I had provided and discussed with him and his brother Rachael came down to do some oro-motor exercise work with him to create more muscle strength and control in the right-hand side of his face which had been affected by the stroke. Before Christmas I re-did an informal assessment similar to that of my original one and he performed far better, making fewer mistakes, having more consistency within these errors - e.g: semantic errors only (using an incorrect word that is linked in meaning to the target word such as using cat instead of dog) and having clearer speech sounds. He was still using a wheelchair at this point.

Fast forward less than a month and I greet a very healthy looking Mr O sans wheelchair chewing away on a piece of gum with very little obvious difference between the two sides of his face. For the entirety of the session Mr O rarely looked towards his brother for help (which he previously did on many occasions) due to his reduced word finding difficulties. After asking both Mr O and his brother of how things are going, areas of difficulty etc.. the main area of functional difficulty seemed to lie with Mr O’s reduced ability to ask new people/strangers things. Upon discussion the crux of the matter is that Mr O is worried what people will think of him if he takes time to speak/cannot retrieve words etc. Therefore after discussing it his “homework” for the next week is to come up with a sentence that is easy for him to remember and produce accurately which explains his difficulty - an example might be “I have had an accident and need some time to speak please”. And then use this sentence with 3 people in his local community who he sees regularly but who are not friends/family - maybe shopkeepers/bus drivers etc.. I’m very interested to see whether he managed it and what the responses were!


Client M
M was a child of 3:6 with a diagnosis of Cerebral Palsy who had come into hospital a few days before I saw him (Thursday) with severe pneumonia. Before I suffered from pneumonia myself a few years back, I always associated it with chest infection due to coldness however it is an inflammatory condition of the lungs that can have a number of causes, one of which is chest infection through aspiration (food/drink going into the lungs instead of the stomach due to eating and drinking difficulties).

On first sight M was hooked up to oxygen to aid his breathing and was coughing away for the majority of the 30 minutes or so as I explained my job, swallowing difficulties and the plan (Mum had confirmed he coughs during feeding, has a chest infection and has lost weight - all signs of aspiration). I organised to come in the following morning to do a swallow assessment / observe mum’s feeding if it was feasible and safe. I trialled M on 2 teaspoons of water (the safest substance to trial on as it is ph neutral and less likely to cause infections) and he produced a delayed but strong swallow with a few small coughs afterward (a sign some may have gone down “the wrong way” into the lungs). I followed this with a small teaspoon of mashed banana to see if his oral movement/swallow was different on a different texture however there was very little oral reaction at all and I manually took out all of the banana from his mouth. Explaining to mum that he is not safe on anything at the current time it would be advisable for an NG tube to be placed with M to keep his nutrition up whilst bypassing his swallow, giving his chest a few days to heal up hopefully without anything going in. At the same time “rounds” where happening and I gave a very brief presentation to the Dr and the 15 of so students who surrounded M’s bed. Immediately after I explained all the Dr exclaimed out loud “Why isn’t this child already on an NG?” before shaking his head vigorously. Which immediately made me appreciate and think that this Dr knew what he was talking about, however whilst listening to him discuss medication options with the students TWICE I had to butt in when he prescribed “oral tablets/capsules” after I specifically said that this child was not safe on anything oral.

Just writing this is making me infuriated beyond belief as this is the SECOND time I have had to tell Dr’s to place a child on an NG tube. This was also the second time I have lost a patient out here.

I received a text message 4am on Sunday morning from M’s mother simply saying: “Hi Jonathan, your friend M has just died, L.”

My thoughts are with you little man.

I asked the hospital what the eventual cause of death was and that is still pending. I suspect it may have just been too little too late for the child due to his numerous difficulties on top of his severe pneumonia and poor breathing. However, if he had been put onto an NG tube when first admitted as he should have done would things have been different?

Almost as a direct consequence of this, I have decided to spend the majority of my last month in hospitals providing as much dysphasia training as I can, as well as working with those in need. Next week I have already booked training for the paediatric hospital staff where M passed away as well as with O.T/E.N.T/Paediatric staff at the other main hospital in Kisumu.

I’ll try not to end on a somber note - tomorrow, along with other speech therapists from Kenya, I shall be heading to Uganda for a 4-day conference - the East African Speech and Language Therapy Conference 2012. It will hopefully be a great meet where there will be guest speakers famous in the world of Speech Therapy but more importantly it will give the platform for the SLT’s in Uganda and Kenya to voice the work we are doing, difficulties we are faced with and hopefully have some good discussions about the future.

Lots of love,

Jon x

Top 3 songs played on Itunes shuffle whilst writing this:

1. The Weight - The Band
2. The Great Beyond - R.E.M
2. Suspicious Eyes - The Rakes