Tuesday 16 October 2012


Thank you to people who've been asking after Mog. She has been pretty poorly, including some interesting (and in true Mog fashion, utterly illogical) new symptoms, but she's definitely much better now, breathing nicely if noisily, producing lots of lovely secretions, and generally picking up where she left off last week.


She's got a really very sore gastrostomy. Mog doesn't do sore gastrostomies; that's the Little Princess' speciality. And bright pink throbbing things with green slime glowing all around them are really totally unnecessary.

So we swabbed it. Labelled it, dropped it off at the GP for them to take to the labs, and the next day she started coughing green, and we breathed a sigh of relief for knowing what we were dealing with, poured antibiotics into her and watched her recover.

But the gastrostomy stayed sore. And so I rang the GP - no lab report. Rang the community nurse - day off. That was yesterday. Rang the GP today. No report. Rang the team. Everyone in meeting, a message would be left.

Drove Mog to respite, having arranged to do so despite not being in school, knowing that Mog has an appointment in Oxford tomorrow anyway, so I may as well enjoy not getting up at five, but instead drive over nice and early and collect a dressed Mog ready for her appointment.

Get home, just as tLP's bus drops her off 30 minutes earlier than expected.

Message from physio who has managed to move mountains and arrange a long planned special even for Mog. Great. Except she's arranged it to happen in school tomorrow afternoon. Attempt to contact physio to explain problem, but no reply. Argh.

Realise no one has returned call about manky gastrostomy. There are three possible options, but knowing the lab results would be kind of important in deciding which treatment to go for. We can extend the duration of her current antibiotics, use a different antibiotic, or discover its not an infection at all in which case we need to work out why it's doing what it's doing.

Call back; been a busy meeting day and no one has had time to respond to my message yet. Can I try again in the morning when someone might be around?

Get a little upset. Am put through to a nurse who suggests I call my GP. Explain I have tried this already at which point she suggests I "access my fast track through to getting it seen at hospital." We have a fast track? Oh, maybe not, turns out she's new and she doesn't have any information about, well, anything really, ha ha ha isn't it silly? Wonder why I've been put through to someone who can't help - apparently she can pass a message on. Unlike the person I initially spoke to, who can merely write messages down.

Mog in respite, my imagination is by now blowing the throbbing pulsating mass of a gastrostomy up into a huge throbby veiny mass with a life of its own. Remind myself this is unlikely, and listen as new nurse recommends I "get it seen but of course you know her best."

Call respite again, am reassured it has not exploded in my absence and is still merely red and weepy. We agree A and E is probably an overreaction. And that I will try again to find someone, somewhere, who has access to lab reports.

Consider applying for info under not Freedom of Information but whichever act it is that relates to personal information held by organisations. Remember that the hospital have decided I am not next of kin for Mog because despite not requiring proof of birth or adoption status they now require copies of our court documents. So would probably be unlikely to give me any information directly. Especially since parts of the hospital now appear to believe she lives at respite. Joy.

Give up. Realise tLP is late for Brownies. Harry her into her uniform and off for a penny hike.

Come home. Sit down. Realise that this one single hour is now potentially the only time in this whole 48 hours of alleged respite when I will actually be sitting down, at home, without a child present.

Debate weeping but decide this would be a waste of precious respite. Go to post blarty status on Facebook but fail to be in any way concise or coherent. Post here instead, before getting up, finding a hairbrush and a cleanish top, then nipping out to pick up tLP before going out for a very nice meal with some very nice Mums who will all understand these particular frustrations, since they form an all to regular part of their own lives too. This evening will be good. This day? Not do much.



Catherine said...

Thrush? That's what's often wrong with L's these days. But currently waiting for swab results here. Hope you get some results tomorrow.
C x

Mama B said...

Too much. Definitely too much for one person to cope with all at once. I'm sorry! Would like to bang some heads together on your behalf. will settle for praying that mog's gastrostomy heals as rapidly and randomly as it got nasty and that you get some unexpected respite.

Linda said...

Sorry Mog has been, and continues to be, unwell. Its so ffrustrating that getting her well doesn't seem to be as high priority for the medical profession as it should be.

Hopefully everything will resolve itself once the correct antibiotics are ingested!


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