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.