It's 6am and I've not had much sleep due to pumps alarming through the night - if a nurse remembers to change Sam's milk and do things when needed I can actually get some sleep.... unfortunately that wasn't the case last night and I had to keep getting the nurse after being woken to ask her to change Sam's milk - which is kept in a locked room. Each time it alarms Sam wakes and it's hard to get him back to sleep. It's a simple thing - sick kids need sleep to get better, parents need sleep to help care for the sick kids, so please write on your sheet when to change his feeds! It's simple enough to figure out... so this morning we are both tired - much more than we need be, but yet again not by our choice.... hey ho.... hopefully tonight we will be back at home again where choice enters out life again!
So I've not blogged in a while - life has been very full and I haven't had the time or energy. This is Sams second admission since my last post. Sometimes I don't write as I cant think of much positive to say, sometime it's cos I'm too tired, sometimes it's because Sam is well and we are having too much fun to post.....
Last admission I didn't blog because the whole scenario was so frustrating and ridiculous! On the Monday I sent off a urine sample concerned that it was cloudy. Tuesday morning I get a text saying a script was being faxed to our pharmacy for an antibiotic for a UTI. Wednesday night I'm making dinner and I take a call from Sams pediatrician followed by a gastro consultant.... it was 5.30 at night. Sams urine had grown 2 different bugs, 1 which was resistant to oral antibiotics and I had to take Sam straight in to hospital for admission for I V antibiotics.... these are antibiotics that can be given in the home (and they were for the last 2 doses)... but we head in... to the emergency dept... again. Gastro are calling the shots and want us admitted but we have to waste more health resources and staff time to be seen and monitored at CED first (3 hours) before getting to the ward where we jump through the same old circles again. Then we have the crazy scenario that we have to throw out our home IV bag of nutrition (around $250 worth) because it is not compatible with the hospital system - they hook up an identical bag, but it just has different tubing - seriously it's all nuts! Everyone knows it's nuts, it's been crazy like this for 4 years - waste of money, waste of time and resources of health professionals etc etc oh and waste of our time and disruption to our kids and family life. So we were in hospital for 3 nights and days - so we could have a 60 minute IV infusion which was then done the last 2 days at home... at the time I was too busy juggling kids and life with Francis to bother putting this crazy into words.
Last week someone told me of the sad story of a friend whose child has suddenly developed cancer and having treatment at Starship. She made the comment that although it was clearly harrowing and hideous for all involved, they were amazed at the care and systems at Starship, implying that I was possibly wrong or negative in my experience. I explained that as a cancer patient they had 24/7 access directly to the ward, they would never have to sit in CED and that they had a disease that was documented with both progression and treatment with very good outcomes.
So I'm not complaining or comparing - I'm just telling you how my reality is with Sam... undocumented, unprecedented, fewer resources and systems that don't support us... this is the life of a family with a rare condition.
The management here agree that it is ridiculous and are trying to change it, but it is such a slow and tedious process of change for them.... hey ho, ground hog day all the way!
This admission was a sudden acute one (ie we weren't invited to CED but just showed up!) as he had a high temperature out of the blue on Tuesday morning and was pretty miserable, so instead of heading to Kindergarten, we head to Starship. So we've be in for two days yo yo'ing between temperatures but no bacteria growing in any of his samples (blood and urine). Today if still no nasties show up, they will stop the antibiotics and send us home as it will mean he just has normal run-of-the-mill garden variety virus - YAY! How cool would it be to just have a normal seassional bug!
Anyway, one tired Mum here off to get sorted for the day, which will hopefully include seeing my two girls and husband today!
Bah Humbug.. X