Monday, May 1, 2017

Not all challenges are medical

I've lost my mojo with the blog.  I've always maintained I wanted to portray Sam holistically as a normal little boy with delight in cars, has fun with his siblings, is social and fun.... and he happens to have some medical stuff going on..  I've been struggling because to be truly honest about his well being now is quite sad to write about - he is doing quite well with living with chronic health conditions, but it is the chronic sadness in his heart, which is affecting his behaviour/speech and outlook that is so very painful to watch.  Sam is deeply loved by both his Mum and his Dad, it's just that his Dad doesn't live in the same house anymore.  Sam doesn't understand this and his pain is palpable.  Sam adores his Dad and they see each other regularly and whenever they can, but it doesn't make sense to Sam and every day he is upset. This impacts my every medical interaction with him as it now takes longer to do his cares as he is challenging me at every turn.  Sam has become verbally and physically abusive at times - It is upsetting, but I know it is just him trying to make sense of it all.  I just hug him tight and tell him I love him and nothing he can say or do will make me ever leave - I'm here for ever!  

Last week he met with a child psychologist and it was really amazing to watch her connect with him and get him talking about his 'big feelings' and that it was okay to be angry and sad.  I am so conscious that humans are not separate compartments and that physical health is affected by our mental and emotional state and vice versa.  

He is a kind sweet boy and today his sisters were very sad about some 'stuff', so he sat down and wrote them a note.... so cute to see him doing this for them. He walked in to Jasmine's room and kissed her sleeping cheek and gave her her note - ahhh, it makes up for all the sibling fights!  See if you can read the note - so adorable!



It has been school holidays here, so one day we parked the car at a local train station, went on a train trip in to the city, then jumped on a boat!  Sam loved his day out experiencing transport that wasn't cars! On the way back he was sharing earbuds with his sister (listening to the sound track off 'Sing') when a commuter sat next to him - it was very funny to see his face as he squished over nearer to us for safety!

You may remember about 2 months ago there was a medical incident where Sam was given a very strong drug at the wrong time - several hours too early.  Sam had to have extra renal function tests and 3 weeks ago he had an audiology review.  Sadly it seems that he has hearing loss in his right ear with higher frequency waves.  This is disappointing, yet not surprising.  Sam will now have 6 monthly hearing tests and an ACC claim has been put in as it could be he requires a hearing aid in the future due to this injury. It saddens me that he was harmed - it was avoidable at several stages, but it still occurred.  I have worked hard over the years to try to improve patient safety and I will continue to. Here he is having his hearing tests.  He was so good at concentrating for around 45 mins. 

Over the years Sam has had some amazing people in his life. One of these has been Leigh - she started as an overnight watch about 5 years ago when she was a 3rd year nursing student.  She would come to our house twice a week so we could sleep and she would be in with him.  In recent years she would give us respite and hang out at home in her new role as RN.  The girls just loved having her around as did Sam and she has become a very special part of our family.  Last week we had a fun filled 'last supper' with her before she flew the coop to Australia.... life is so enriched when we do life together!


Tomorrow is Sams first day back at school after the 2 week break. He is looking forward to seeing all his friends again ... and of course seeing Ange again (his trusty carer).  This week Sam has just one visit to hospital on Wednesday.  Last week Sam had a chest xray, just to compare with previous images and to see how he is doing.....the images show his lungs are quite mucky so need to make sure we are doing twice daily chest physio.... as well as his leg physio to try to help his gait/hip alignment. 

Feeds have been increased now to higher proportion of the multi-fibre higher energy feed, so he is now back down to 12 hours - it is so much easier having him hooked up for less time.  And this time the output has not slowed/thickened to point of crises like it did at the end of last year, so we are hopeful to continue changing up the feeds in the next week. 

So Sams life is just like yours and mine - a combo of mental, emotional, physical and spiritual challenges.  With Easter having just passed, I read an inspiring book about the life of Mary - the mother of Jesus.  An angel told her she would have a baby who would be the Saviour of the world... and she would be called blessed'.  The book looks deeply at our concept of 'blessed' - so often we think of comfort, wealth, abundance, good health etc.'.  I wonder how blessed Mary felt sitting in the dark at the foot of the cross her precious 33 year old son was hanging dead on?  Yet in the darkness God was doing his greatest act - across town the veil that separated God from mankind was being ripped from top to bottom so that anyone could now be in Gods presence - not just a privileged religious few. In the greatest darkness the greatest act of love and hope and reconciliation was taking place.  I find it fascinating that a 33 year old man that lived so long ago is still at the crux of history and debate..... Every night I read Sam a bible story and pray with him before he goes to sleep. Today we read a compilation of bible verses, 'God cares about every detail of our life, He collects ever tear, he knows every hair on your head (a quick count for some!), He knows all we are going through, He loves you and cares for you' . That knowledge fills me with hope and joy as I look to the week ahead, knowing that God sees every time I hook Sam up, drain a kidney or hug him through his tantrum and heart pain.   I can confidently walk knowing God is present and working, even in the darkness and unknown of life. 

Sleep well X

1 comment:

The Dockers said...

I just love your rawness Shirl and the fact that you are so real and allow us to see your heart and know your pain. I feel for Sam and the struggles he is having with no Dad living at home now. Its gut wrenching. We all want you to know how much we love you and are here for you through this journey. We honour you as a Mum and woman of God, for your integrity and faith and strength of character. May the Lord bless you and keep you; the Lord make his face shine upon you and be gracious to you; the Lord turn his face toward you and give you peace. Much love from us xxxxx