26 May 2011

May 25th - Our first overnight at Queen Alexander

The regional pediatrics oncology center in the south is located at the Southampton General Hospital, at the Piam Brown ward. They however only have 10 beds and is usually kept for those located locally, new patients and really ill ones. We are 14mins away from the Queen Alexander hospital which is located in Portsmouth and is therefore our 'shared care' hospital and where we need to go for emergencies and any other treament that doesn't require going into SH. Having said that because Paige wasn't eating and definitely not drinking combined with diarrhea and a hot day I was concerned and so was the consultant when she saw her so we were admitted for her to have IV fluids overnight and wait and see.
If you think taking care of a baby with leukemia is difficult, try taking care of one who is in the process of  teething! Of course if she has sore gums she won't necessarily eat/drink and possibly have loose stools however these are also symptoms of an infection and since she is neutropenic, I thought that the best thing would be to take her down. We were admitted and she was miserable and crying, she eventually fell asleep at 9.00pm then woke up screaming at 11.30pm. At this stage the nurse suggested that we give her some paracetamol, which I said we couldn't given that we were expecting a temperature, anyway we gave her some codine and she slept through till 7.00am. This morning when we were playing and looking in her mouth for possible sores/irritation we saw 4 new teeth popping out :-) . That's now 8 altogether in 4-6 weeks!
The consultants at this hospital seem to know what they're doing but the nurses not so much. Paige has now has 4 new dressings in 2 days because they just can't get it right, and it's still not right but I couldn't allow them to distress her anymore. Of course I've spent my life being responsible for how to do things properly and this is no different. I got comments like "Mum is on the ball" of course I'm on the ball! Paige is a precious, one of a kind baby! Of course I'm prone to be a bit harsh given the perfectionist that I am. Also Paige is admitted onto a general pediatric ward not an oncology ward, so the nurses are necessarily trained for this which gives me even less comfort. I've also spoken to other parents and they've noticed that they tend to make mistakes quite often so we need to be very diligent when staying at the QA with our little one.
On the bright side we always get a private room with an en-suite and I get to sleep on a bed that is 2 feet wide, if I need to turn, I'll probably have to step off and get back on! but it does beat sleeping on a chair in a 4 bed bay!
Anyway we got lots and lots of giggles and I think Paige heard the consultant say that if she drank a min of 50mls we would be discharged. Of course Paige drank 50 mls of water straight after she left and also had about 80mls at her afternoon feed, compared to nil on the previous days.
So I've chalked up this whole experience to teething, luckily she wasn't started on antibiotics. She's now at home and asleep in her bed like an angel.....

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