Thursday, March 31, 2016

Urgent Surgery Today

So Sam has had a great 10 days at home.... Until last night! 2am he woke with a really high temperature, 3am it got higher so I gave him pamol ...4.30am he was up to 40 C + and a bit delirious, so I hooked him off his 3 feeds and rushed him into Starship. It has been a long tiring day with Sam fighting needing oxygen and constantly fighting his nasal prongs.

Blood results quickly showed he had a blood sepsis most likely in his central line. He was given three antibiotics and many discussions were had between the various teams - Infectious Disease, surgical and gastro. It waa decided that as this was the second time in 3 weeks he had a life threatening sepsis, that the line had to come out. At 5:45 an orderly appeared to wheel Sam down as there was a spot on the surgical list. Sam was really exhausted as he hadnt slept since 2am, so he was loud
and screaming he didnt want to have surgery. He was really scared as well as thrashing about, so the poor wee man knows what is happening and was so unhappy. I cuddled him as he thrashed about. We talked about how he felt scared and I told him when I felt scared that I remembered what God said, 'Dont be afraid, for I am with you'.... And I asked God to come and be with Sam and help him cos he was afraid. I sang and cuddled and prayed in his ear ... And he relaxed and became calm. When I stopped praying he asked me to keep talking to Jesus about him. I love that faith is real and tangible and impacts every day life.

Once he was asleep I came back to my room and cried - tears of sadness for Sam, tears of grief seeing him struggling, tears of helplessness that I cant protect or take away his pain. Tears of tiredness, tears of 'I dont even know really what for'.

I sit in his room waiting for the call from post op to summon me down to get him. I am hoping and praying that he responds ok to the anaestetic and isnt violent like he has been.

Again friends and family have stepped in to support the girls to get them to piano lessons after school to keeo their routines in place.

Although it is disappointing he loses this line, Sam now only uses it 3 times a week now - Tues and Wed he has TPN and Sat he has clear fluids. His IV Nutrition is only 16% of his calorie and fluid content, so maybe, just maybe the team are looking at how to increase calories in his GJ so that he may not need another central line - this is truly an amazing thought!

Good sleep is our most important thing tonight so Sam can recover and get stronger, as well as the bugs in his blood to be hit hard by the antibiotics. Also for the girls to feel secure and content inspite of the upheaval.


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

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