Saturday, March 12, 2016

Roller Coaster .... Again!

So at 10.30 yest morning we we told that Sam had been taken off the surgical list, as the blood cultures from his line had come back negative. It was all very bizarre as his feeds were all still stopped at 2am.  Anyway, again the frustration of so many teams involved (gastro, surgical and resp), plus whatever the hospital politics are it has been a weird 24 hours.

So the good news is that the line has been saved, the bad news is that he needs a 10 day course of antibiotics, 3 times a day. The good news is that he is well enough to be up and about and all seems normal, the bad news is that this drug is only licensed for adults, so he must stay in hospital for the duration. 

He is still battling with something in his lungs so needs oxygen at night, which he is not impressed with. At 2am we had a bit of a wrestle to get them on (I could be a hostage negotiator with all that goes on in a day in his hospital room!). At one point I looked at the nurse, who had seen me intersct with him for about 10 mins, and said, 'I know we have an anti smacking law, but he is just being plain naughty and he knows I am powerless and I am over negotiating, so I am going to parent him now as I see fit and that will involve a smack'. 2 mins later and prongs were on.  This isnt a political blog, but  he anti-smacking law inhibits me parenting Sam and also he has learnt defiance due to it, and in his case he needs to comply for his health.  

This morning Sam was blatantly rude and defiant when he needed to do his chest physio, he was wasting her time and mine and he needs to donthese exercises to strengthen his lungs. I looked at the physio and said the same to her as I told the nurse at 2am .... Again the negotiating, begging (both parties) came to a complete holt and the physio work was completed for the benefit of Sam. I really am angry that I feel watched and in potential threat because I am helping my son, and yes, that involves a smack sometimes.

At 3am the Dr was called as his oxygen requirements were going up. She was happy that trhe antibiotics he is on are broad and will cover his chest.

So the upshot of last night is I am a bit weary.... But not enough to escape hospital! I write this as Francis drives me and the girls to Auckland airport. We are heading to Wellington for the weekend. 1 pm flight and we have great plans of discovering Wellington this afternoon (I have been mumbling something about needing a Nana nap). Tomorrow we will have the day at TePapa. The girls and I head back to Auck tomorrow night so I will see Sam tomorrow night. It is weird/hard/awful leaving him, but his special nurse 'T' is going to hang out with him so we can take his break. The girls are so excited and its hard trying to be excited feeling like you have left your left arm unwell and in hospital. The medical teams were happy for me to go as he seems stable and if anything changes I will just come back earlier.

The plan this week, all subject to Sam not throwing a curve ball, is hopefully we can juggle his drugs to 6.30 am so he can have day release and get to school for half a day, returning back to hospital for his 2.30 pm dose. 

Its been a full on week - I think I handle them worse as I get older. Sleep depravation is truly a form of torture ... Looking forward to some shut eye this weekend.

X Shirl

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