Quick Update Thursday Night: Sam had bladder dye study - showed all liquid was contained in bladder and didn't leak anywhere it shouldn't. Surgeons meeting tomorrow to discuss where to from here. X Tis Tuesday 10 pm, Mickey Mouse clubhouse is on tv as Sam is wide awake with the nurse just having been in for her hourly checks, plus he had a big nap this afternoon to make up for his lousy nights sleep. I have been trying to teach Sam how to poke his tongue out - it just is a skill a small child should enjoy, but he isn't very good at it, probably because he has a weak tongue cos he doesn't eat (true!). If u r lucky u will get a photo of my attempts after my ramble, which is awash with frustration.
Yesterday gastro requested that the Surgical team take Sam over for this admission, as any further treatment was to be of a surgical nature - it makes sense. We will continue with our nurse specialists, who are our point of reference no matter which team Sam is under. Well it gets to 5pm and I mention to the nurse that we've not been visited by anyone all day - what is the plan? She talks to gastro, gastro chase surgical and at 6.10 pm a guy walks in in scrubs and says, 'when Sam goes tomoro for his cystoscope....' At this point I smile and interrupt him saying, 'Hello, I'm Shirley, Sams Mum - Who ARE you?' Seriously has he never seen the movie Patch Adams? It's not 1950 anymore when Drs are brains on legs and people mere objects of the privilege of their skill lavished on the infirm! Should it not be compulsory that every person in health care watches this great true story as part of their Professional Development? Anyway, once the forced niceties are laid to rest he explains that Sam is to have a trip to radiology tomorrow (today) where they will fill his bladder with dye and take photos under X-ray to see if the liquid leaks over into bowel etc. If it leaks out, it means that bugs can leak in and that would prove his source of constant infection. Seemed like a good plan, to which I said, 'what time was the procedure booked and would I need to sign consent?' He said it had been booked but he had no idea what time and the radiology booking system is separate to Starship so no way of telling til the next day... But it would be sometime - hmmm, so not helpful when trying to plan 'life'. Should I attempt to go to work?. What about collecting the girls from netball practice? What time should we attempt to bath Sam and could we launch into a big activity with him like painting or making something? The surgeon had no answers then left. The nurse then advised that someone had written in the notes that he was booked in for an audiology review at 2pm today. It was unclear who booked it or why and would it indeed clash with the X-ray appointment which no one had any idea of timing. I'm outlining the above as this is the normal when living in here. Our plans seem of zero consequence to those that have power over us by the fact they have what we need and we have no other means of obtaining it. That statement relates to so many situations and people - to the 'have nots', those in warzones, minority groups, the sick, the vulnerable. People here are very caring, but I'm conscious that the individual can get horribly lost amongst the bureucracy and systems. I keep trying to change and work with the people here to improve things on a systems and practical level. I'm also conscious that I can only really change me and my reactions and ideas. This is why I keep writing this blog - as I write I think and I process and I learn. I started tonight feeling resentful to the surgeon and his reaction, but as I have written, I am conscious that he was at the end of a long day, busy, tired and rushed. Now MY challenge is how do I interact with people when I become busy and rushed. I need to be aware that whoever I am interacting with at the supermarket or at work is a person of great worth who has a name and has needs and is an integral part of a family that needs them. And I know I don't treat people that way.... wouldn't the world be different if I actually treated people how I expected to be treated... ouch!
Anyway, I went to work and the nurse was going to phone me once she had heard anymore so I could rush back in and be with Sam for his procedure. Well at 10am I got a call saying that the X-Ray had been booked for Thursday at 10.30. I am glad I didn't sit in hospital waiting for nothing! The audiology review had been booked by ID as repeat use of strong antibiotics can cause hearing loss. I explained that the last audiology clinic was quite tough on Sam and that he wouldn't be able to attend with his pumps and drains in - totally impractical. So that has been put off to Friday. ID make decisions without ever coming to see Sam - they look at blood results, chemistry and meds - had they seen Sam they would have seen how crazy it was to book him in for this - again the reminder that 'patients' are people is on the tip of my tongue - if I was to ever meet one of these 'ghost Doctors' as I have come to call them as I'm not sure they really exist, I will have a wee chat about the above.
Today Sam continued having his IV abx three times a day and is on continuous bladder washout. No one from the surgical team came to see us, so we are assuming to just continue as is until after Thursdays scope. We don't know how long they want the bladder washout going, but while it is in Sam is bed bound and a bit uncomfortable. He has now been in bed 9 days, which means his muscles will be weakening and we are conscious of keeping bed sores at bay.
He is happy enough, bless him - he puts up with so much and is always so happy. Today he did painting and puzzles and enjoyed himself.
I spoke to the girls today - 1 home from school with winter bugs and 1 at the Inter Schools cross country champs. Candace and Dad cooked tonight from the food bag that was delivered on Sunday night - the girls are loving cooking, albeit it easier than normal.
Tomorrow I will go to work and come back here so I can stay the night and be here for his X-ray appointment on Thurs, which I have just heard has been brought forward to 9am. Thursday night Francis gets to sleep here so I can see the girls and sleep without hourly night visitors and bells going off. It seriously is so quiet and strange when I sleep at home - silence truly is golden!
I will try and leave you with a photo of a happy boy and his new found skill!
If you made it this far, thanks for listening to my ramblings X