Friday, March 11, 2016

Surgery Tomorrow

The last week has been a whirlwind of sleepless nights, hospital, school camp for daughter no#2, ultrasounds, infusions and multiple trips up and down the Auckland Motorway.

Saturday night Sam was very unhappy with a lot of waking to vomit and complaining of back pain. At 2am he had a high temp, but with pamol he settled. On Sunday morning I bundled him up and into the Emergency Dept. At this point he hit 42 C and was shaking and telling me he was scared. Unsure of the source of the infection, he was admitted, blood and urine tests done, chest xray to see if a pnuemonia is the culprit.  Twice we were to be transfered to the ward, but he was too unwell to go up until his vital signs had improved.

Various theories circulated as to the source - viral, urinary tract infection, line infection or the start of a lung infection.  Until definitive results showed the source he was given a mix of hard core antibiotics. 48 hours after they were started blood results showed a nasty bacteria attached to his central line.

So tomorrow he is on the morning surgical list to have his current line pulled out of his chest, as the bacteria is very hard to kill once it attaches to plastic.  He will also need to have a new PICC line put in so he can get his nutrition and antibiotics. He will need a couple of weeks of  big drugs to kill the bugs, them once the team are happy these have gone he will need another surgery to get a new central line.   Doing the maths, I'm guessing  conservatively we are in for atleast another 2 weeks.

With Sam being older he told me tonight that he was scared about the surgery. We talked about it and he said something that surprised me, he said, 'but I like my line - if it goes how will I get TPN'. To us it is a medically inserted device. To Sam it is a part of him, its all he knows... So we talked some more and I told him he would get a PICC line so he could still have his TPN. I asked him if he would like his line back from the surgeon to keep. He perked up and smiled and said, 'I would love that - good idea!'. I cuddled him as we talked and then he asked me to sing 'the song I love Mummy', so I sang his favourite Psalm, 'The Lord bless you and keep you, the Lord make His face shine on you and give you peace'.  So as Sam grows and develops it is a challenge how to communicate with him and how to support him as he navigates his extra ordinary life.

Sam has been encouraged by a package of letters from his classmates. They are totally adorable and displayed around his room.

So a big day ahead for Sam.  We would value your prayers for the surgical team and for Sams body to fight these germs .... And for Sam as a little 6 year old boy to be brave and courageous and to know peace.

I leave you with 2 pics - 1 of an adorable letter now on his hospital wall and 1 of our little champ.

X Shirl

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