As we unpacked Sams gear back into his room, I spotted his wall calendar:
I felt so sad as I thought back to the last time Sam had been in his room.... so much of his life spent negotiating surgeries, procedures, rehab etc.... then I felt immense pride for the courage he shows. I have been teaching Sam about the word Courage since day one of this admission. As he is old enough to voice his anxiety of certain procedures, on this admission he was telling me he was scared and what he didn't want to do. I told him that he needed to be courageous - to do something even though it was hard, just because it was the right thing to do. Sam is courageous. As I drop my girls to school each day I shout after them, 'Dont forget to be .....' and they shout back to fill in the gap, 'Courageous' (as they roll their eyes). As we watch the olympics and hear the back stories of many of the athletes, I am amazed at their tenacity and courage to have faced often hard situations, to reach their goal. Courage - this is the word for Sam at the moment ... actually I could do with a dose of it too!
Sam has gone to school for the morning and was SO excited at the thought of seeing all his buddies and teachers again - School is such a safe and happy place for him, which truly brings delight to my heart. I am thinking a morning will be more than enough for him, as his little body adjusts to being up and about and active, after such a long period of inactivity. After school I will meet him at the local Lab, so he can have some blood tests done. Home after that, where he will need to be hooked up to his Monogen milk feeds.
Sam has come home on quite a different regimen to what he has had before, so last night I was tense as I tried to get my head around the change in feeds and meds and what is needed to keep him ticking over. He is now on 19 hours of milk feeds and 12 hours of electrolytes (running at the same time, in case you think NZ has 31 hour days!) He has 3 x day meds (to help slow down his poo output). He also needs to have all his poo measured and noted. I have clear and strict instructions on what to do should his outputs be above 800 mls in a 24 hour period (add in some more hours of electrolytes) and what to do if it is high after 48 hours. Sam will also need to have blood tests on Mondays and Thursdays to monitor his magnesium and potassium levels. If the potassium levels are low Sams paediatrician will call me and I will need to give him a medicine in his GJ tube. If his magnesium levels are low it will be straight into Starship for admission and an IV magnesium put up. Last night Sam was desperate to have me sleep in his room - for the last 8 weeks he has had night time companionship. He woke at 3 am shouting, 'Mum, empty my poo bag!'. It was bulging full, so I obliged and measured it stumbling around half asleep and hoping I wouldn't spill it. He goes straight back to sleep ... sadly this old brain doesn't nod straight back off... so will need a nana nap today. I finished paid employment last week, so am very grateful to be able to use my days so I can survive the nights!
It is great to have Sam home, but I am feeling unsettled as he isn't stable - his outputs are all over the show and the pressure to care for him while maintaining all of the various requirements does weigh heavy on me, all whilst trying to be Mum to two gorgeous girls. But as I had a wobble last night I was reminded of a text from a friend this week: Psalm 61: Hear my cry, O God; Listen to my prayer. From the end of the earth I call to You, when my heart is overwhelmed and weak; Lead me to the rock that is higher than I. For you have been a shelter and a refuge for me'. Amidst the tiredness and uncertainty, when I pray I know peace and certainty again - certain that our family is not alone and that there is a God listening and protecting and helping us.
I leave you with a photo of him the day before discharge - he went for a walk with his Dad and found the hospital Muffin Break. As Francis had his coffee Sam enjoyed the attention of people admiring his bee and being out of his room. Bee is getting his new nose today and Sam has decided he would like it to be blue - watch this space!