Thursday, 8 December 2011

In, out, in , out..... (poorly again )

Tuesday evening Hope was not a happy Honkey. Over a couple of hours her unhappiness increased. She became pale. Then she was sick. She's only been sick twice, both times a sign of an infection. Once being an ambulance job. So when she threw up again, and was becoming more and more distressed, we took her to hospital. I know that might seem an over reaction. I'd not rush dolly and moo to hospital if they'd been sick, but Hope is so fragile, and I'd rather we took her, prepared, than wait a few hours and need an ambulance.

Hope has 'open access' to the children's unit. She is considered by them as a 'frequent flyer'. Our favourite ward doctor G was there to meet us. She knows Hope well. She's also the only doctor that can get a line in Hope quickly. She did a great Job getting it in first time!

Hope's obs were fine. Sats 100, temp 35 (Normal for Hope). Her blood gases were fine. And her Lactate (our main marker) was good- 2.0. Hope was calmer and I felt reassured. So we discussed with G, the fact that she most likely is ok, and that the other blood labs wouldn't be back for a few hours, so it was agreed we could go home, with the canula in, and the community nurse would visit in the morning, and in the unlikely event that there were any issues with the other lab results, she would call us.

6 am the doctor rang to say her urea was sky high-11 (should be less than 6) so we were to go back in for fluids and follow up bloods.

Hope slept through the night. Woke for about half hour, then slept some more.

I managed to get about 150ml of dioralyte into her, and by the time we were back in, she had perked up a little bit. Her other bloods were normal, no sign of infection.
We were lucky that R heard she was on the ward and came up to see her. He said if her next urea came back above 8, she'd have to go on IV fluids for at least 24 hours. To my amazement it came down to 7.2 so we managed another lucky escape.

Though once home again I questioned whether we really should be. She wasn't her usual happy self. And in fact mainly slept and slept. But I've learnt from other families with PDCD kids that they all tend to sleep lots when they are poorly.

Today (Friday) started off with a nasty BIG seizure, but we rode it out, and thankfully by the five minute mark chris and I could tell it was going to pass. She slept another couple of hours, but by midday, was eating and drinking and rolling and very chatty. It's now 23.47, and she's just going off to sleep. That's more normal :0)
All just in time for her big sister's 12th birthday in the morning!


At her last opthamology appointment, it was felt that her visual awareness (Hope has cortical visual impairment) had improved greatly, so where she's always been long sighted, and previously they felt glasses wouldn't make much difference, now they wanted to give her the best opportunity to see.

According to the man in specsavers, it was 'quite a prescription' and they had to order the lenses in. We chose some little miss sunshine (perfect) frames, and picked them up a few days later.

As predicted by the optician, results with such strong prescriptions can be amazing. We envisioned Having to build up the time she spent wearing them, but once they were on, she just began looking around. We only take them off her to go to bed and have a bath, and then we feel like we are depriving her of her vision. Ok, so I know her vision is still far from perfect, but they've definitely made a difference. And they suit her so much. I think some people Really suit glasses, and Hope is definitely one of those people. She already looks odd without them.

(name of post attributed to Rachel Bass who commented 'spec-taculor' on a pic of Hope with her new glasses :0). )