I now have two girls with gastrostomy tubes. To those of you unfamiliar with the process, picture a pierced ear. Then instead of an earring, threat a thin plastic tube through the piercing. That's pretty much what a gastrostomy is, only instead of in the ear, it's in the stomach - up and to the left of the tummy button.
Remember getting your ears pierced? Those first few days, you have to turn the earring regularly, clean the ears scrupulously, and leave the earring in place to allow the piercing to form. It's the same with a gastrostomy, except that the stomach is not as clean as the ear. The piercing ends in a dark pit full of acid, and acid under pressure can eat its way back up through the new hole and burn the skin on the outside.
Mog's stoma (the piercing) is beautiful. Perhaps I have an odd idea of beauty; I'm sure most Miss World entrants would not consider a hole in their stomach to be an added bonus. But by beautiful I mean it is clean and dry, it is the same size as the tube which goes through it, it looks in fact like a well established ear piercing hole. You could leave it for a few hours without it closing up if you needed to.
Mog does get occasional infections. Her stoma was MRSA positive for a while, and may still be. Granulation has not been a problem for her (this is where the skin tries to heal itself and just grows and grows and grows around the edge of the tube). She gets the odd abscess which requires antibiotic cream, but once it has burst and drained, the stoma quickly reverts to its usual pristine condition. I have prided myself on this. Nurses have commented on how unusual it is to have such a beautiful stoma, and how it must be down to our care and cleaning process. I have seen quite a few gastrostomy sites, and although Mog's is by no means the only perfect one I've seen, I have seen plenty of disgusting ones. Some (but by no means all) of them have undoubtedly been due to poor care and cleaning. I have been laid back and breezy about how easy it has been to keep it clean, how regular cleaning and creaming when sore is all that has been needed, how we leave it alone when it's well and just rotate it, and how any gastrostomy site can look like this if you pay it a bit of attention but not too much.
Now Little Fish has a gastrostomy tube and a stoma all of her own. And I am eating my words. Pride goes before the pus. Little Fish's stoma is ugly, folks. The hole is now twice as big as it was when it was created, it is greenish, and the skin around it is raised, angry, and red. I'm told it's not an infection, it is because Little Fish is wriggling and the tube is not stabilised. The phrase the nurse used was "imagine a lamppost in wet concrete, the more you move it the bigger the hole it is set in will get". A lovely image. I am cleaning it in the same way I clean Mog's tube. She is screaming somewhat more than I remember Mog screaming - I think she has more of the anticipatory fear than Mog had. I am using Lyofoam, a special one way barrier dressing which sucks up the pus and stomach acid and lets the skin heal beneath it (straight gauze just holds the acid against the skin, ouch). I am taping it in place so it can't move. And still the hole is growing, still the sore area is spreading.
Can it be that for all my pride, the true secret to Mog's perfect piercing is not that I am so good at keeping it clean, but simply that she cannot move and wriggle and bend and stretch in the way Little Fish does? Is it perfect simply because it comes under no pressure? I'd like to think not, and I'm sure that the cleaning is important and not a bad thing to be doing. But I suspect that all my efforts are merely helping, and the main reason Mog's stoma stays a nice neat little stoma shaped hole is just that it is never pulled into an un-stoma-like stretch.
Of course there's always the more problematic issue that it could be nothing to do with Little Fish's acrobatics. It could in fact be that she is allergic to the tube itself. It is a latex free tube, but just because it has no latex in it is no guarantee she is not allergic to whatever it is made from. I do hope that's not the case; I'm not sure what, aside from silicone and latex, they can use. And she can't go without fluid for the rest of her life. If it's a question of allergies versus my pride, I'll take the pride fall any day.
Tia
Thursday, 7 February 2008
Tuesday, 5 February 2008
Is Disability a dirty word?
A parent complained the other day that someone described her child as disabled. The child has a combination of different impairments, different special needs, but these do not, in the eyes of the mother, add up to a child with a disability. The child cannot walk without falling over, but this does not make the child disabled.
I have to admit, I was surprised by this. See, my girls are disabled. Profoundly disabled. I don't think Little Fish's disabilities get in the way of her doing anything other children her age are doing (she's certainly got the screaming tantrums of the typical toddler, and is recovering from one as I write this. So am I). But that doesn't make her not disabled. When the playing field is level, her wheelchair goes just as fast, if not faster, than other toddlers can run. She can steamroller quite a few of them, producing an entertaining human skittle effect, if she hits a row of them at just the right angle. She can play, scream, learn, get tired and get ill, make massive messes and be hugely helpful, be adorably loving and infuriatingly obstinate, often all at the same time. She is, in most respects, a pretty average toddler. As far as most people who meet her on a casual basis, she is a toddler who happens not to have use of her legs. There's more to it than that, but that's probably all that is evident on first viewing (at least once the scars from her nasogastric tube fade away).
I would be annoyed if a stranger in the street called her retarded, I might wince if they decided to call her handicapped. I would definitely be upset if that stranger called her own children away and crossed the street to avoid us (yes, it happens). But to be upset because they notice my child is disabled? It seems strange to me.
I know that being a wheelchair user makes a child obviously disabled. Perhaps wobbling is subtler. But having fostered wobbly children, I'd prefer that passersby noticed the disability, and took steps to compensate for it (by giving the child more space to move), rather than shout at the child for being clumsy or stupid or careless. Wouldn't you? Or would you? Perhaps I am odd.
I certainly prefer "disabled" to the comment we had in the supermarket once. I was pushing Mog in her comfy new wheelchair - so comfy that she had fallen asleep in it. A little boy ran up, looked closely at Mog sleeping peacefully, and ran back to his mother shouting "I think that little girl's dead!" I'm quite pleased she was asleep - not sure how I'd have explained that one to her.
Disability is difficult (queen of the understatements). To the medical profession, my girls are failures. Little Fish should never have been born, Mog was either a mistake or an unfortunate accident. Their continued existence is a constant reminder of the limitations of current medical practice. The urge amongst surgeons is to fix, fix, fix. The temptation is to keep on trying to fix, trying to make the broken body that much more perfect. Or alternatively, to give up, to stop trying to make one small part a little bit better, because overall, the child is still massively, grossly, broken.
I have had doctors refuse to treat my girls; the hospital doctors refused to admit one child who had been having seizures for three days straight because, in the words of the doctor "she's severely retarded and it is to be expected". I have had a doctor tell me that Mog's gastric bleeds and vomitting coffee grounds is "trivial, compared to everything else she's got going on and not worth treating". Over and over again I have to remind unfamiliar doctors that I am not looking for a miracle cure for cerebral palsy or spina bifida, I am not trying to take away the girls' disabilities, I am simply asking for help with one particular problem. Which may in itself have nothing to do with the disability. Disability is not insurance against the normal hazards of growing up. Being disabled does not protect a child from chicken pox, colds and 'flu, broken bones and appendicitis. It's easy, apparently, to ascribe all symptoms to the disability. My daughter is not crying in pain, she's crying because "that's what children like that do". My baby is not gasping for breath, "he's found a sound which he finds funny".
I've also had doctors and therapists try to fix what can't be fixed, trying to force my daughter's body into positions it cannot hold without pain, unbelieving when I explain that Mog cannot cope with having her feet clamped to her footplates, or that Little Fish cannot chew with a paralysed tongue.
I suppose what I'm asking is that people neither become blinded by the disability nor blind to the disability. A fine line. Accept that my girls have limitations, but don't impose your own. Maybe that's what the parent in my opening paragraph was complaining about. But I don't think so. I think she was complaining that someone noticed her child was disabled. Perhaps she isn't ready to consider her child to be disabled. I wonder what she would consider disabled to be?
Our government defines a disabled person as someone who has a physical or mental impairment that has a substantial and long-term adverse effect on his or her ability to carry out normal day-to-day activities. And states that the impairment must affect one or more of the following capacities: mobility, manual dexterity, speech, hearing, seeing and memory. The child in question has problems with things in at least three of those categories.
I must remember I chose to join this club, the "parents of children with special needs" club. My children come to me precisely because they are disabled; they would not be my children if they did not have their disabilities. I have the luxury therefore, of loving the disability as a part of the child, right from the start. I suspect that, for many parents, membership to the club comes at a price they would prefer not to have paid, and that membership card is something some parents choose to hide for a very long time. I remember a few years ago hearing about another parent, who was raising funds at work for a charity which supports his child. It transpired in the course of conversation, that although he was happy to talk about what the charity does, he had never mentioned to workmates that his child was disabled. Is that the same thing? Hide it away, consider it shameful? Or perhaps simply choose not to mention it, choose to keep one part of life unaffected by the disability fog which clouds every aspect of life at home?
I intend no criticism. People deal with disability in different ways. Parents aren't exempt from that. Provided the child in question (and siblings) is cared for, nurtured, loved, I don't think it matters how the parents do that.
Disabled children and adults are thankfully visible in this country. When we go into town, I am not the only adult pushing a wheelchair. Little Fish sees adults driving themselves in their power chairs, Mog sees other adults being pushed. We see adults and children alone and in families and on outings from local residential care homes. Adults with physical disabilities, learning disabilities, visual impairments, mental health problems, autism.
When I worked in a residential school for children with profound disabilities, the children in that school never saw adults with disabilities. Students left at 19 and were never seen again, staff were all able bodied, as were the volunteers who came to help out or for work experience. Small wonder that some of the children there assumed their disability would disappear once they hit adulthood. The world of adult life was represented to the students by visits from firemen with a big shiny engine, policemen with flashy sirens, actors and musicians with plays and concerts, dancers, postmen with their vans,farmers and vets with their pets. Would it have been so hard to find some of the ex-students, now living in residential placements or sheltered housing, and ask them to come back to talk to the present students about their lives? Or were we scared to show the children too much reality?
Disability is. Disability is lifelong, however long or short that life might be. I wonder what message our children get when such a large part of their life is not mentioned, or conversely when it becomes the only subject of conversation? Somewhere between not admitting that the child has a disability, and not accepting that the child has or is anything other than a collection of disabilities lies the balance. Of course I like to think I've got it right with my girls, but I'm sure I make mistakes at times, and I'm sure my version of right is very wrong to other families.
One thought more. If disability is a dirty word, does that make the disabled child dirty by association?
Tia
I have to admit, I was surprised by this. See, my girls are disabled. Profoundly disabled. I don't think Little Fish's disabilities get in the way of her doing anything other children her age are doing (she's certainly got the screaming tantrums of the typical toddler, and is recovering from one as I write this. So am I). But that doesn't make her not disabled. When the playing field is level, her wheelchair goes just as fast, if not faster, than other toddlers can run. She can steamroller quite a few of them, producing an entertaining human skittle effect, if she hits a row of them at just the right angle. She can play, scream, learn, get tired and get ill, make massive messes and be hugely helpful, be adorably loving and infuriatingly obstinate, often all at the same time. She is, in most respects, a pretty average toddler. As far as most people who meet her on a casual basis, she is a toddler who happens not to have use of her legs. There's more to it than that, but that's probably all that is evident on first viewing (at least once the scars from her nasogastric tube fade away).
I would be annoyed if a stranger in the street called her retarded, I might wince if they decided to call her handicapped. I would definitely be upset if that stranger called her own children away and crossed the street to avoid us (yes, it happens). But to be upset because they notice my child is disabled? It seems strange to me.
I know that being a wheelchair user makes a child obviously disabled. Perhaps wobbling is subtler. But having fostered wobbly children, I'd prefer that passersby noticed the disability, and took steps to compensate for it (by giving the child more space to move), rather than shout at the child for being clumsy or stupid or careless. Wouldn't you? Or would you? Perhaps I am odd.
I certainly prefer "disabled" to the comment we had in the supermarket once. I was pushing Mog in her comfy new wheelchair - so comfy that she had fallen asleep in it. A little boy ran up, looked closely at Mog sleeping peacefully, and ran back to his mother shouting "I think that little girl's dead!" I'm quite pleased she was asleep - not sure how I'd have explained that one to her.
Disability is difficult (queen of the understatements). To the medical profession, my girls are failures. Little Fish should never have been born, Mog was either a mistake or an unfortunate accident. Their continued existence is a constant reminder of the limitations of current medical practice. The urge amongst surgeons is to fix, fix, fix. The temptation is to keep on trying to fix, trying to make the broken body that much more perfect. Or alternatively, to give up, to stop trying to make one small part a little bit better, because overall, the child is still massively, grossly, broken.
I have had doctors refuse to treat my girls; the hospital doctors refused to admit one child who had been having seizures for three days straight because, in the words of the doctor "she's severely retarded and it is to be expected". I have had a doctor tell me that Mog's gastric bleeds and vomitting coffee grounds is "trivial, compared to everything else she's got going on and not worth treating". Over and over again I have to remind unfamiliar doctors that I am not looking for a miracle cure for cerebral palsy or spina bifida, I am not trying to take away the girls' disabilities, I am simply asking for help with one particular problem. Which may in itself have nothing to do with the disability. Disability is not insurance against the normal hazards of growing up. Being disabled does not protect a child from chicken pox, colds and 'flu, broken bones and appendicitis. It's easy, apparently, to ascribe all symptoms to the disability. My daughter is not crying in pain, she's crying because "that's what children like that do". My baby is not gasping for breath, "he's found a sound which he finds funny".
I've also had doctors and therapists try to fix what can't be fixed, trying to force my daughter's body into positions it cannot hold without pain, unbelieving when I explain that Mog cannot cope with having her feet clamped to her footplates, or that Little Fish cannot chew with a paralysed tongue.
I suppose what I'm asking is that people neither become blinded by the disability nor blind to the disability. A fine line. Accept that my girls have limitations, but don't impose your own. Maybe that's what the parent in my opening paragraph was complaining about. But I don't think so. I think she was complaining that someone noticed her child was disabled. Perhaps she isn't ready to consider her child to be disabled. I wonder what she would consider disabled to be?
Our government defines a disabled person as someone who has a physical or mental impairment that has a substantial and long-term adverse effect on his or her ability to carry out normal day-to-day activities. And states that the impairment must affect one or more of the following capacities: mobility, manual dexterity, speech, hearing, seeing and memory. The child in question has problems with things in at least three of those categories.
I must remember I chose to join this club, the "parents of children with special needs" club. My children come to me precisely because they are disabled; they would not be my children if they did not have their disabilities. I have the luxury therefore, of loving the disability as a part of the child, right from the start. I suspect that, for many parents, membership to the club comes at a price they would prefer not to have paid, and that membership card is something some parents choose to hide for a very long time. I remember a few years ago hearing about another parent, who was raising funds at work for a charity which supports his child. It transpired in the course of conversation, that although he was happy to talk about what the charity does, he had never mentioned to workmates that his child was disabled. Is that the same thing? Hide it away, consider it shameful? Or perhaps simply choose not to mention it, choose to keep one part of life unaffected by the disability fog which clouds every aspect of life at home?
I intend no criticism. People deal with disability in different ways. Parents aren't exempt from that. Provided the child in question (and siblings) is cared for, nurtured, loved, I don't think it matters how the parents do that.
Disabled children and adults are thankfully visible in this country. When we go into town, I am not the only adult pushing a wheelchair. Little Fish sees adults driving themselves in their power chairs, Mog sees other adults being pushed. We see adults and children alone and in families and on outings from local residential care homes. Adults with physical disabilities, learning disabilities, visual impairments, mental health problems, autism.
When I worked in a residential school for children with profound disabilities, the children in that school never saw adults with disabilities. Students left at 19 and were never seen again, staff were all able bodied, as were the volunteers who came to help out or for work experience. Small wonder that some of the children there assumed their disability would disappear once they hit adulthood. The world of adult life was represented to the students by visits from firemen with a big shiny engine, policemen with flashy sirens, actors and musicians with plays and concerts, dancers, postmen with their vans,farmers and vets with their pets. Would it have been so hard to find some of the ex-students, now living in residential placements or sheltered housing, and ask them to come back to talk to the present students about their lives? Or were we scared to show the children too much reality?
Disability is. Disability is lifelong, however long or short that life might be. I wonder what message our children get when such a large part of their life is not mentioned, or conversely when it becomes the only subject of conversation? Somewhere between not admitting that the child has a disability, and not accepting that the child has or is anything other than a collection of disabilities lies the balance. Of course I like to think I've got it right with my girls, but I'm sure I make mistakes at times, and I'm sure my version of right is very wrong to other families.
One thought more. If disability is a dirty word, does that make the disabled child dirty by association?
Tia
The Potter
I have a post I'm musing through and it's taking a few days to mull over. So in the meantime, I thought you might like one of my poems.
Tia
Tia
Tia
The Potter (14, Sept, 2000)
The pieces on the floor, the pots and vessels scattered
The potter kneels amongst the shards, equally shattered.
He takes the clay and holds it in his hands
It will not mould again, he understands.
A lifetime’s work in ruins, gone astray
A lifetime’s plans destroyed in just one day.
The curate weeping, life a mess, doubts and worries, fear and stress.
The child abused, confused, afraid, childhood lost, innocence waylaid.
The man alone, no home, no place, no one ever sees his face.
The woman lost, a life of pills, drowning under mental ills.
Each vessel smashed, each piece destroyed
Designs all lost, the shapes a void
Clean the slate to start again
Flood the world with wind and rain
And yet, and yet the rainbow stands
Between the maker and the man
His creation broken the Potter weeps for us
The lost, the sad, the lonely, damaged us.
He weeps for you, He weeps for me
For what has been, and what is yet to be.
The shards He gathers pierce his skin, He bleeds
And still He holds us tight, He meets our needs.
The pain contained within my brittle shell
He knows and loathes and shares and feels as well.
The loving Potter holds me tight and feels
And loves, forgives, begins again and heals.
Tia
Monday, 4 February 2008
I'm a winner too!
And don't these look beautiful?
E2's booties. So hard to choose though! I think this pair will have to be for Little Fish; she's definitely earned the right to something pretty after everything she's gone for over the past week.
Many thanks, Lauren!
Tia
E2's booties. So hard to choose though! I think this pair will have to be for Little Fish; she's definitely earned the right to something pretty after everything she's gone for over the past week.
Many thanks, Lauren!
Tia
And the Winners Are...
For the Dora Kite
And for the tin of biscuits
These are from Random.org's integer generator.
Counting down the comments, that means that Lesha has won Dora's Kite, and that the biscuit tin goes to Deborah. Congratulations! I will get them out in the post to you when you give me your addresses.
Tia
Random Integer Generator
Here are your random numbers:
15
Timestamp: 2008-02-04 12:44:13 UTC
And for the tin of biscuits
Random Integer Generator
Here are your random numbers:
56
Timestamp: 2008-02-04 12:45:13 UTC
These are from Random.org's integer generator.
Counting down the comments, that means that Lesha has won Dora's Kite, and that the biscuit tin goes to Deborah. Congratulations! I will get them out in the post to you when you give me your addresses.
Tia
Saturday, 2 February 2008
Bobgonnit!
Last Wednesday was a bit of a mad rush. Little Fish is always tired on a Wednesday, so she wasn't awake until 9. Mog all togged up and ready for school, her bus was late, so didn't leave the house until 9. Babysitter due at 9.30 for Little Fish. Our morning carer packs a bag for Mog, I have the intention of making Little Fish and I smart, and then packing a hospital kit for us both.
It is as I load the breakfast things into the dishwasher, making the load complete, that I notice a stagnant pool of water at the bottom. I do a quick investigation, but am unsure at this point whether it is striking for better pay and conditions, sulking over the special treatment accorded to the washing machine, or terminally ill. Whatever the cause, it appears to be taking great pleasure in making a loud humming noise and then doing nothing.
So the babysitter turns up and is greeted by the sight of me trying to siphon off scummy dishwater water whilst simultaneously washing up the curry plates from the night before and kicking clean socks into a hospital bag. Queen of multitasking, that's me. Little Fish meanwhile is banging her spoon on her tray, sending a fine spray of Weetabix arcing up and over the kitchen. Smashing.
I clear up the worst of it, throw a set of clothes for LF at the sitter, and hare off into the city to get to court in time. I am, inevitably, early. No cameras allowed in the court, so mine is confiscated at the door (forgot it was in my bag) and I am given a small green raffle ticket to reclaim it later. I sit and wait for my solicitor. And I sit, and I wait. And sit. And wait. I am just beginning to wonder whether I am in the right place, when Mog's social worker turns up, together with a student SW. They sit and wait for a few minutes, and then go upstairs to do some more waiting. Returning almost immediately to point out that my solicitor is also waiting upstairs. Excellent.
We do the necessary introductions, wait for the rest of the people due to attend, and it is at this point we realise that there is no mention of Little Fish on the application papers. Oops. This is remedied, Mog's other mother turns up and we eventually make it into the courtroom. We are running late at this point, and the solicitor is concerned that his parking meter will run out.
The court room itself is perhaps not quite what people might be expecting; the judge wears no wig and no gown, there is no wooden panelling nor rows of jurors, just a very large desk with seats for all of us in front of it. My solicitor speaks for approximately three minutes, the judge agrees with what he says, and the hearing is adjourned until some time in March. For this, and the paperwork leading up to this point, my solicitor charges £668. This bill includes £2 parking ticket, but does not include a parking fine. I assume therefore that he beat the traffic warden back to his car. £90 per hour, and carers in the UK are paid £46 per week. Thankfully fostercarers are not expected to pay the legal bill in this situation.
I stop for a coffee with Mog's mother, and then have to race back home to relieve our sitter. Once home, I am greeted by the sight of a big white van - Bob has returned! I now have 15 minutes to thank and pay the sitter, finish throwing clothing into a couple of bags, find some food and console Little Fish for my absence. 12.5 of this minutes are taken up by Bob, who wants to show me what he will be doing, what he has been doing, and generally needs me to admire the decking once more. I explain that we will be away until Monday, grab Little Fish and head for school to collect Mog. Thoughts of a building project finally finished tick through a largish corner of my mind - the weather is good, he's been gone long enough to have collected everything he needs, let's be hopeful.
Only slightly late collecting Mog means only a little late getting to hospital. I won't go into the hospital bit in depth; it's over and it was depressing. In summary, we were moved from the specialist ward to the general ward, dumped unnecessarily in the High Dependency Unit, finally and reluctantly accepted back on the ward, and then denied our place at the hospice thanks to comments made by the ward staff who had no idea how Little Fish was doing and hadn't thought to ask or find out before telling the hospice she was not ready for discharge.
So discharged last night, we called in to see Mog and then Little Fish was desperate to see Grandad. A quick visit catching him on his way out, then pour a tired Little Fish into bed and follow not long after. Horrible night with Little Fish's Nippy beeping regularly until it settled down for a few hours at 2AM. So we're rather tired this morning.
I walked into the sunroom and was struck by how big it appeared to be. And then I realised, Bob has collected all his tools. Excited, I went outside to take a look at my newly completed garden and building work. And realised that it is not finished. All he did on Wednesday was to finish one small piece of trim and move a pile of earth. The machinery in the garden has been collected too though. This does not bode well. I now have the same list of work needing to be finished, and a builder who has collected all his tools and disappeared.
He will be back - he will have to come back, he hasn't yet submitted his final bill. And one day, he will turn up and actually finish the job. Until then...
Tia
It is as I load the breakfast things into the dishwasher, making the load complete, that I notice a stagnant pool of water at the bottom. I do a quick investigation, but am unsure at this point whether it is striking for better pay and conditions, sulking over the special treatment accorded to the washing machine, or terminally ill. Whatever the cause, it appears to be taking great pleasure in making a loud humming noise and then doing nothing.
So the babysitter turns up and is greeted by the sight of me trying to siphon off scummy dishwater water whilst simultaneously washing up the curry plates from the night before and kicking clean socks into a hospital bag. Queen of multitasking, that's me. Little Fish meanwhile is banging her spoon on her tray, sending a fine spray of Weetabix arcing up and over the kitchen. Smashing.
I clear up the worst of it, throw a set of clothes for LF at the sitter, and hare off into the city to get to court in time. I am, inevitably, early. No cameras allowed in the court, so mine is confiscated at the door (forgot it was in my bag) and I am given a small green raffle ticket to reclaim it later. I sit and wait for my solicitor. And I sit, and I wait. And sit. And wait. I am just beginning to wonder whether I am in the right place, when Mog's social worker turns up, together with a student SW. They sit and wait for a few minutes, and then go upstairs to do some more waiting. Returning almost immediately to point out that my solicitor is also waiting upstairs. Excellent.
We do the necessary introductions, wait for the rest of the people due to attend, and it is at this point we realise that there is no mention of Little Fish on the application papers. Oops. This is remedied, Mog's other mother turns up and we eventually make it into the courtroom. We are running late at this point, and the solicitor is concerned that his parking meter will run out.
The court room itself is perhaps not quite what people might be expecting; the judge wears no wig and no gown, there is no wooden panelling nor rows of jurors, just a very large desk with seats for all of us in front of it. My solicitor speaks for approximately three minutes, the judge agrees with what he says, and the hearing is adjourned until some time in March. For this, and the paperwork leading up to this point, my solicitor charges £668. This bill includes £2 parking ticket, but does not include a parking fine. I assume therefore that he beat the traffic warden back to his car. £90 per hour, and carers in the UK are paid £46 per week. Thankfully fostercarers are not expected to pay the legal bill in this situation.
I stop for a coffee with Mog's mother, and then have to race back home to relieve our sitter. Once home, I am greeted by the sight of a big white van - Bob has returned! I now have 15 minutes to thank and pay the sitter, finish throwing clothing into a couple of bags, find some food and console Little Fish for my absence. 12.5 of this minutes are taken up by Bob, who wants to show me what he will be doing, what he has been doing, and generally needs me to admire the decking once more. I explain that we will be away until Monday, grab Little Fish and head for school to collect Mog. Thoughts of a building project finally finished tick through a largish corner of my mind - the weather is good, he's been gone long enough to have collected everything he needs, let's be hopeful.
Only slightly late collecting Mog means only a little late getting to hospital. I won't go into the hospital bit in depth; it's over and it was depressing. In summary, we were moved from the specialist ward to the general ward, dumped unnecessarily in the High Dependency Unit, finally and reluctantly accepted back on the ward, and then denied our place at the hospice thanks to comments made by the ward staff who had no idea how Little Fish was doing and hadn't thought to ask or find out before telling the hospice she was not ready for discharge.
So discharged last night, we called in to see Mog and then Little Fish was desperate to see Grandad. A quick visit catching him on his way out, then pour a tired Little Fish into bed and follow not long after. Horrible night with Little Fish's Nippy beeping regularly until it settled down for a few hours at 2AM. So we're rather tired this morning.
I walked into the sunroom and was struck by how big it appeared to be. And then I realised, Bob has collected all his tools. Excited, I went outside to take a look at my newly completed garden and building work. And realised that it is not finished. All he did on Wednesday was to finish one small piece of trim and move a pile of earth. The machinery in the garden has been collected too though. This does not bode well. I now have the same list of work needing to be finished, and a builder who has collected all his tools and disappeared.
He will be back - he will have to come back, he hasn't yet submitted his final bill. And one day, he will turn up and actually finish the job. Until then...
Tia
Friday, 1 February 2008
unplanned intermission
I wrote a long long piece here, read it back and it bored even me. So you've got the brief version instead.
Little Fish's operation went extremely well; she's settled, not too sore, pleased with her tube and it all seems to be working just fine. The rest of our hospital stay was a complete nightmare and there are now investigations underway and official complaints not instigated by me but by others involved in our care on our behalf.
Mog has been unwell at the hospice but we popped along to see her tonight and she seemed pretty happy.
We should not be here at home today, but, as a result of part of the hospital nightmare, our bed at the hospice was given to someone else. We are headed that way tomorrow morning and will be staying there for a couple of nights at least.
For now, Mog is settled. Little Fish is settled. I am tired, annoyed, and going to bed.
Tia
Little Fish's operation went extremely well; she's settled, not too sore, pleased with her tube and it all seems to be working just fine. The rest of our hospital stay was a complete nightmare and there are now investigations underway and official complaints not instigated by me but by others involved in our care on our behalf.
Mog has been unwell at the hospice but we popped along to see her tonight and she seemed pretty happy.
We should not be here at home today, but, as a result of part of the hospital nightmare, our bed at the hospice was given to someone else. We are headed that way tomorrow morning and will be staying there for a couple of nights at least.
For now, Mog is settled. Little Fish is settled. I am tired, annoyed, and going to bed.
Tia
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