Friday, August 6, 2010

Friday Night

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....


Lea said...

Hi there Francis and Shirley

Just catching up with with you and Sam on your blog, My, but he looks so great, and has made big strides since i last checked a month or so ago - notwithstanding the current infection setback.
I often think of you,

every blessing


Nicholls's said...

So pleased Sam is responding to treatment and praying that the stubborn bugs in the line get the boot quickly so that you can be together as a family again real soon. M&S

Anonymous said...

Hey there.. great to hear of the progress that Sam has made. Go the Gentamycin!! Continue to think of you all. Final rugby game for Jono tomorrow - wont miss the chilly side lines A wee nibble on the house (from Aussie) - here is hoping that they love Wyndham!!
xxx from 21 Alma St.

Marybeth said...

I'm sorry to hear about the bugs in Sam's line, I really hope they clear up soon so you all can go home!!

It's amazing how well his gut is doing! I read a document, and have it saved about MMIHS, and how the studies have shown with proper timing, and management of sepsis that the upper urinary tract can heal up over time, and the gut has slow development. There has been cases where children with MMIHS have gained gut function, and orally receive their diet! I have a feeling Sam will gain the ability to do so. Janessa is going slow and steady with hers. We now keep her gtube clamped up much longer, and her gut absorbs more.

Our babies are amazing<3
Hope all is well with the family, god bless you all, you guys are amazing!<3

Anonymous said...

Samuel continues to amaze us all despite the many setbacks. What a handsome dude and those long eyelashes will capture many hearts. Looks so cute in his tee shirt too!! May our wonderful God continue to look after you all.
Lots of love from all in Palmy and Waitotara.

bronheslop said...

Look at that delicious boy, drinking his bottle. You're so handsome, Sam! Grow strong and stay well, kiddo.