Friday, May 12, 2017

Hooray for POOP!

πŸ’©πŸ’©πŸ’©On Sunday night I changed Sams feeding regime, as per the staggered plan created by the Starship dietician.  He has been on the same 60%:40% combo of 2 feeds for 2 weeks so it was time to change it up to 80%:20%.  Sadly Sams intestines did what it did last time and slowed down significantly.  On Monday he was a bit rounder and outputs had thickened/slowed.  On Monday night the night sleeper ended up turning the mix down as he was waking to be sick and complaining of pain. Tuesday he was rounder still.  Tuesday and Wednesday nights got progressively worse with pain and 'Michelin Man' was coming to mind. Last night at about 1am, I made the decision to stop all calorie feeds and just pump him full of electrolytes (to keep his fluids up) and that I would take him to hospital first thing in the morning.

At 7 am I emailed both Starship and Middlemore as I wasn't actually sure where I should go.  7.25 am the nurse specialist called and we had a chat and I made the call to go to Middlemore, as Sam had been seen at a clinic there on Tuesday, so the comparison and familiarity would be useful.... plus Starship was full and we would end up sitting in the emergency department for endless hours (think windowless bunker).  I sorted the girls off to school and gave them various scenarios as to what to do if Sam was to be admitted.... thankfully we only had to get to Plan B for one child and Plan A worked a treat for the other!  After packing up, sorting up we got to Middlemore about 10am.  This was precisely around 30 mins after Sams outputs had decided to ramp up! So I emptied his poop bag of thick goopey poop 3 times in an hour - I was SO happy, although I felt like such a fraud and promptly burst in to tears on the poor Reg that came in.... I did explain that 2 nights of very broken sleep was a large part of the tears, but once I sorted myself out we hatched a plan to hook Sam up to feeds in hospital and see if the blockage had truly gone.  I think also as a Mum it's just hard watching your kids in pain....and I knew where this ended up last time and so didn't want that - so they were tears of relief! They think that the extra fluids had just helped unblock the blockage, and 48 hours worth of poop thankfully arrived - better late than never right!  Suffice to say that various people received the 'pile of poo' emoji in texts! πŸ’©πŸ’©πŸ’©πŸ’©πŸ’©

It was lovely to see Sam pain free and back to his usual self and it was a win to get home just in time to pick up the girls after school.

On Monday I had a school meeting about Sams progress at school.  This meeting had numerous people around the table - OT, Physio, SENCO, RTLB, LA, SNC and Teacher - LOL to all those education acronyms!  A bunch of kind, skilled individuals all discussing Sams progress, points of concern and how to help him make the most out of his learning and time at school.  I always come away from those meetings with mixed feelings.  I feel sad for him as I hear what he needs help with and see the huge gaps between him and his peers in some areas... but it's so moving hearing them all discussing Sam and seeing their genuine care for him and seeing how far he has come!   It was agreed at the meeting it would be good to get a cognitive base line to help everyone know his strengths and weaknesses and how to approach that.   So he is now booked in for a WHISK test (another acronym I have no clue what it means) which I think is basically an IQ test.  This is taking place on Wed 24 May.

Tuesday I had Sam at Middlemore for his Paediatric review. He is weighing in at 22.8 kg and 114 cm - which has him on the first percentile on the growth height chart.  In the afternoon I took Sam to Gravity.  Upon chatting to my dear friend a few weeks back, it dawned on me that Sams time is taken up with so many clinics that I don't actually do anything that fun with him!  Gravity is a trampoline park and they have a $10 Tuesday and I figured jumping around for an hour would be great for his core, his lungs and coordination.  I tried not to think of potential broken limbs, such as his sister endured on a trampoline, but that the benefits and fun factor could be very cool.  It was a fun time and he loved it!

On the way home Candace was quiet and I asked her what was up.  She said, 'Don't you feel sad when you see all that Sam can't do - he couldn't jump and do what all the boys his age are doing'. It was a very sweet comment as her caring heart for her brother came out and I realised I was speaking to myself as I said, 'Yes, I do feel sad for him so often, but when you have been told your child will probably not survive labour, when you're told he probably wont ever walk etc, etc, ... how amazing is it to see him running around on trampolines!'. It was a good lesson for the both of us about how perspective and what we decide to listen to impacts our every day.  We talked about how it is so important to acknowledge the emotions of pain/sadness/disappointment etc as they are totally valid, but if we allowed ourselves to dwell on those thoughts of sadness the joy of the past hour of seeing him laughing and enjoying it (albeit in what looked like a limited way) would be stolen. We talked through the bible verse, 'Be transformed by the renewing of your mind' and how it was our choice what we thought about and how our thoughts are so powerful as they turn into actions. She perked up as we talked and laughed with Sam and talked about all the cool things he loves doing - he listed off 'Going down the slide at school, the trampolines, wrestling with Mum (it is a daily activity in our house and I apologise in advance if you happen to pop in when a session is in mid flow, as Sam doesn't see anything is an excuse to stop!),'.  Below is a photo of the two of them the next evening (just be grateful there are no wrestling photos):

So I leave you with some great quotes that I heard this week - I hope they help you to see a bigger perspective and to find things to be thankful of in the midst of what ever storm you are weathering.  I like these quotes because they don't pretend all is perfect, but they give us courage and hope in the midst of hard:

'Contentment is the greatest form of wealth'

'True wealth is measured not by quantity but by the quality of calm amidst the storm' (I was a millionaire today!)

'To be content is to be ok with what I don't have'

'Comparison is the thief of joy'



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