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'

Goodnight 

X S

1 comment:

Bron Heslop said...

Nigel and I often pray for Sam, and thank God that He is bigger than medical opinion and probabilities - we remember only too well that they said he wouldn't live for 24 hours.

I love your quotes too - a dose of perspective.

Big hugs, Shirl. Xxx