Saturday, September 14, 2013
'Doctor, can I go home?'
Sam is now well enough that everyone that comes in his room gets asked, 'Doctor, can I go home now?'... it could be a cleaner or nurse or someone lost in the wrong room - but whoever comes in he asks! The answer today was still No, but it's looking like we are working towards getting home on Monday. Sam clinically is much better. He grew a few more bugs in his blood and urine a couple of days back and had really high amounts of diarrhea, so it meant he was hooked up all day to replacement fluids to ensure he didn't get dehydrated. His new surgical drains are working well and yesterday we sat him in a bath and soaked off all the tape and dressings from the surgery 7 days before. The scar looks amazing and the whole site looks really healthy. This past week has been really stressful. Sadly much of what went on has been like Deja Vu, with many avoidable errors taking place in hospital. I spoke with management who agree that what went on should not have and that Sam was affected and suffered because of it. I worked yesterday with the acting charge nurse to put into place some safe systems (again), but the whole experience has been awful and avoidable. It makes me so angry that Sam suffers due to broken systems - systems that I have been trying for four years to approve and on this admission, although the systems were in place, they were ignored..... and Sam, who has more than enough to struggle through has to struggle more than necessary. I will not rest until I know that kids are safe in hospital. I will be talking again on Monday with management to see what they are going to do to make sure the confusion and errors don't happen again, and if I'm not happy with their response I will be taking it further. Today I have been home with the girls - washing the car, weeding the vege garden, cleaning out the hen coop, washing - just doing life. Then we headed in to see 'the boys' - Sam was so excited to see his sisters, but he was very sad when we left again and was pleading to come home.... hmmm. I am excited about tomorrow - we are going to head out with Sam in the afternoon to Devonport for a couple of hours. It is the first get-together of a support group called PNDU - Parenteral Nutrition Down Under. We are going to meet up with a handful of people in the wider Auckland area who live on TPN or are involved in caring for people on it. I am so excited to be going to meet these people that inspire and encourage us through emails and on-line forums. There are groups that meet around Australia, but this is the first time for a get-together in NZ and it feels a bit like meeting family, although I have no idea who they are or what they look like... but I have read their words and heard about their lives and challenges online.... must feel a bit like meeting an internet date for the first time.... that kind of nervous expectation.....not that I have any personal experience in that... we look forward to having Sam home on Monday and then I can be under the same roof as my husband for the first time in weeks.... Right - off to watch rugby and do time sheets for Sams staff... S