Wednesday, February 15, 2017

4.30 am

Yes it is 4.30 am and I have given up on sleep.  Sam is watching TV from his bed (Doc McStuffin) and I thought I may as well do something productive.

Every 30 mins since midnight Sam has been screaming out in pain.  The only relief that seems to work is to give him a bladder wash out - push 60 mls of warmed saline into his bladder with a syringe and then drain it out.  It gives instant relief, he goes back to sleep until the next round of pain wakes him screaming again.  He is so tired, but I am hoping the distraction of tv, will give him some distraction from pain. He has Pamol and Ural on board, but it doesn't seem to be doing anything.

Mondays clinic went well - It was decided to take urine samples and a blood culture off his port. Both urines are growing bugs.  The quote was 'a Zoo of bacteria'.  It seems he has a fungal/yeast infection in his bladder, which we are now treating with an oral med (Fluconazole).  We await results of which type of bacterias (I think 3 different ones present) are growing so the Infectious Disease team can figure out a treatment plan for that..... (just off to do another bladder washout - that was only 20 minutes).

OK, it is now 4:49 and I am back.  Ironically Doc McStuffin just said to her sick toy, 'you know, you should take a nap'.  Great advice!

This week has been trying.  The cumulative affect of living with broken sleep is tough on everyone.   School is a good distraction for Sam, but I wonder how this affects his development/brain/emotions. He went to school yesterday in spite of broken sleep the night before, but tonight has been so much worse, so I think I will keep him home today.  Ange (his carer) can stay with him and do some school work, so I can go back to bed.  I feel like a shift worker, but there is still so much to do in the day to keep him ticking over.  Yesterday I took 4 calls from Drs and had to drive to Middlemore Hospital to pick up meds, plus I needed to drop in new prescriptions for his feeds.  It is now 4.55 and I need to go to him again.... poor wee guy, the day (or night) in the life of Sam can be very unpleasant for him.

The plan tomorrow is hopefully to take a call from his Paediatrician at Middlemore to find out a treatment plan for the bacterias.  It could involve being admitted to Middlemore (more on that later!), a nurse coming home to start him on IV meds, or another oral med thrown in the mix.

So Sam has always been treated at Starship - NZs only childrens hospital.  Kids from all over NZ come to Starship for specialist care, if it isn't available in their local hospital.  Sam is under many different teams (Surgical, Urology, Gastro, Cardiac, Respiratory and Renal).  But because we don't live within the catchment zone for Starship (ie, it isn't our local hospital) Sams lead Paediatrician has to be in our catchment (Middlemore).  And this is where crazy politics comes in.  If any child presented with a UTI, it is usually dealt with by a Paediatrician -  no further specialists are involved. So after 7.5 years of being treated in Starship it has now been deemed that Sam should be treated by his local hospital (ie his Paediatrician).  Now his Paediatrician is fabulous - kind, clever, lovely manner with Sam etc.... but nothing is ever straight forward with Sam and although Middlemore are now taking him on, his urinary tract is affected by the dozens of surgeries he has had and the bacteria is also linked to gastro issues.  It means that we will potentially be admitted to a hospital where the nurses will all need to be trained in bladder wash-outs etc... as these aren't common practises.  Of course any nurse could learn it (I do it and I'm not a nurse), but I am feeling very vulnerable with everything being new... and also not having a choice and just being told suddenly this is what will happen.  I am concerned that Sam may not get the care he needs and that it will be back like days of old in Starship where I was always required to be at his side to make sure his whole self was cared for.  I am also so aware that historically Sam doesn't remain straight forward, but once admitted there is need for surgical input or his lungs become compromised and he needs respiratory input/care.... I am unclear what happens at that stage and am assuming we would then get ambulanced to Starship where all those specialities are?  Interestingly even the girls are feeling vulnerable, as this is all new to them - Starship is familiar to them and they know where to go for places of quiet, to find free food etc when they need a break from Sams room.  So this is going to be an adjustment for all, but underlying it is an anxiety that Sam needs to continue to get the care he requires.  I know I don't understand the full story and am not privy to the many discussions that go on behind the scenes to care for Sam, but being in a place of forced transition isn't very nice.

Anyway, these are questions for Sams Paediatrician tomorrow/today.  It is now 5.22 and I have just done the 4th bladder washout since I started this less than an hour ago..... hmmmm, will also be chatting to the Dr about pain management, because this is not a good quality of life for Sam.

I was going to head away with the girls for the weekend, but I think I will cancel as I need to catch up on sleep from the past 2 weeks, ready for the next 2.  The girls are a bit disappointed, but then they also live in this house and see what goes on, so they are kind enough to understand.  We have some free tickets to Rainbows End (theme park) so they may get to use these instead if the weather is good. I have got some extra funding for 1 night a week of an overnight sleeper - the paperwork to employ her is also on my list to do tomorrow - that will be amazing to have in place and will be a huge help.

Right, it is now 5.30 and I will try to get Sam back to sleep.  It would be nice to get an hour in before the girls get up ready for their day.

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