Well tonight I am home with the girls and Francis is up with Sam in hospital. Yesterday was an interesting day with many visits from different doctors and 2 surgical teams.... all with slightly different ideas of what to do with Sam.... needless to say the plan changed about 6 times!
The I.D drs(Infectious Disease), wanted to take Sam's line out as it's still harbouring bugs. The gastro docs concurred, although they had mentioned when the line wasn't being used to feed Sam his TPN they could try 'locking' the line with gentamicine.... a really strong antibiotic that bugs hate, but can damage kidneys. Normally when Sam's line isn't being used it is locked with a heparine/saline solution. When we go to use the line again we draw back this lock before using the line. It's basically a solution to stop blood clotting in the line, to keep the line patent. The surgical teams wanted to try 'gent locking' it over the weekend to see if that can kill the bugs in the line, so we can save the line. It seems the surgeons get the final say, but the caveat from the medical team that if Sam spikes another temperature the line comes out immediately.
Sam hasn't had a temperature for 24 hours now and his blood taken from a peripheral line is clear, as are the kidneys now, so it seems the bugs are just in the line. Each day before he gets his gentimicine he needs a blood test to check his kidney function, and today he wasn't that stoked about having his finger pricked and pumped for blood.... poor wee guy.
Whilst he's unwell he is still requiring oxygen, which is a shame, but hey if he needs it, he needs it. We look forward to him well enough to lose those prongs!
Today I took Sam down to level 1 for an ultrasound on his kidneys/bladder. Nothing amiss there, with the radiographer saying the kidneys were possibly slightly better than the last scan taken a month ago.
So now Sam is still on 3 X day I.V. antibiotics as well as a once daily dose of 'gent' and having 'gent locks'. In himself he seems back to normal altho' a little pale and sleeping more than usual.
Bizarrely since he's been sick on this admission he's been really hungry and been guzzling 3 X 90 ml bottles of milk and also having a tablespoon of apple last night. The other very strange thing is that he hasn't vomitted in 3 days - no one is particularly sure why, but it's a good sign.
The surgical team also said that whilst we are in they will train us in redirecting his faecal matter. At the moment it's a yellow fluid that comes out his ilieostomy, but after other tests, it seems that he may have a lot of bowel below the cut that could be able to absorb nutrients. So the plan is that we somehow (to be learnt) take the fluid and re-insert it into the distal loop of his ileum..... and then hopefully it will go through normally and pop out in his nappy after the goodness is absorbed. We're excited that this potential is there, and it could mean that Sam's TPN requirements drop even more, which is an excellent scenario, but it all sounds potentially very messy.... but hey, we've learnt other things we never thought we could do, so hopefully with hindsight this will be in that basket too.
The bummer is that the girls are in 'quarantine' and not allowed on the ward due to chicken pox exposure, so they haven't seen Sam in a week and we haven't been a family in the same place for 3. It's not much fun....but then we're not the sick ones fighting illnesses like the ones I see languishing on the ward..... and for that we are thankful and humbled.
So this weekend we're praying that the bugs can get the heave ho from his line and that he doesn't need to get a new one....
Will just be a quiet weekend (hopefully) to'ing and fro'ing to hospital and watching and waiting. Will update on Monday night once the various medical teams have wrestled out the next plan....