I didn't blog my thoughts on Tuesday because I was too angry. Even now I'm not sure how coherent this will be.
J wasn't x-rayed. We have to wait 2 more weeks. On one level, that might seem reasonable - "our" consultant will be back by then, and the only consultant who was there this week wanted it to be our consultant who dealt with it. You see, "our" consultant (Mr M) put on the form last week that he wanted the x-rays done in cast - but that doesn't make sense. None of the others have been in cast. So we wouldn't have been able to compare like with like. So I rang last week and asked for the x-ray to be without the cast - or to have a justification of why the consultant had put "in cast". I was told by the nurse that they'd sort that out, but arrived to find it hadn't been sorted. No matter what I said/did, there was no changing the decision. It's not just 2 weeks though. I requested the x-ray 2 weeks ago - so I've been waiting 2 weeks already. And the last x-rays were October - so it's actually weeks and weeks.
One other point about the x-ray is that I was told that we might not get the result in 2 weeks time. Even more waiting.
And the nurse (she's a spinal specialist) seems to want to become the go-between between me and the consultant, so she's the one who talks to Mr M rather than me and she can relay the information. I don't want a filtered version of info. If I have questions I want to be able to ask him straight away. I'm really not happy about that turn of events.
So no x-ray this week. I am waiting on tenterhooks to see what state J's back is in. Mr M said he didn't know whether J's scoliosis is progressive. The Oxford consultant thought it is likely that it is, because otherwise it would be showing signs of improvement by now.
If it is getting worse, then we start a whole new ball game. And judging by the track record, there will be endless waiting lists etc as we go into the realms of... whatever!... growth rods? surgery?
My plan was to see what state his back was in and if necessary move heaven and earth to see re treatment in the US.
If the x-rays show the curves have remained static, then I would feel that the wait until 21 March when we have a date to start treatment in Oxford won't be sooooo bad - although that may be cancelled because they are an A&E dept. Still horrendous given that we are losing precious growing time etc. But I can't do anything about the wait and at least the curves wouldn't have got any worse.
To repeat what I've said before: the Mehta type casting should be done before 18 months to get correction. J will be 22 months by then. He's shooting up like a weed- we're losing all this precious precious time/growth.... But if I go down that path in my thoughts, I just end up despairing. This might all mean that J has a lifetime of back problems (and other problems given that it can affect life expectancy, internal organs, fertility etc etc etc). If it had been dealt with when he was very small, he might have had a perfectly straight back by now. How can you not feel angry/despairing when you think about that?????
The other things that made me incandescent were:
1) They didn't think it "relevant" to tell me about J's spina bifida. Even as I write this I can feel waves of outrage and indignation. Relevant??? How can you withhold information like that??? It's not just J who's affected by such a diagnosis! You might recall, I found a note in J's notes in December that the spina bifida had been picked up back in July. I wrote a letter to Mr M to ask about this (as well as other shortcomings with the notes in the file). I still have no response (see point 2))
[It's a side point, but one that also makes me incandescent: I still find it hard to believe that someone I know (who is qualified in a medically-related profession but saw J in a social context not a medical one) thought J had scoliosis at a few weeks old but never said anything. I will never understand that. It's a progressive condition. It can affect life expectancy. And they never said. WHY WHY WHY WHY WHY WHY WHY??????????????!!!!!!!!!!!!!!!!!! If treated at a v young age, it can be fully corrected. Why on earth would you not tell the parent? If you are wrong, then everyone is happy]
2) I still haven't got a response to my letter dated 21 December. The nurse said it may not have been opened yet!!!!! Ok -Mr M's secretary is on sick leave (long-term sick leave as she had an operation). Ok. But he does have a temp working for him. You can't get hold of consultants by phone. Or by email (not the done thing in the medical world apparently). So you have to rely on snail mail. Waiting 4 weeks seemed perfectly reasonable to the nurse I spoke to. They live in a different universe.
It's not fair on J. He deserves prompt, high-quality care.
All I can do is hope that 1) the x-ray shows the curves are still static (or by some miracle have improved???) and 2) that the Oxford casting does something to help resolve them.
I'm sorry J - all the despairing and pushing and everything just doesn't seem to get us very far. I hope that when you read this when you're older that you understand that mummy tried very hard. I sometimes wonder whether these experiences might steer you to a medical career or something else where you can have a positive influence on treatment for scoliosis. But that's just me hoping for a good outcome in some way, rather than any pressure on you!
Thursday, 26 January 2012
Tuesday, 24 January 2012
In the pink again
Initially Patrick only offered J purple, blue and red. J looked perturbed. He knew the one he wanted was missing - and when Patrick returned from the cupboard with the pink packet again, J was very clear in his choice!
Thursday, 12 January 2012
overnight thoughts
Well since I couldn't sleep, I've been googling and emailing overnight and followed up my plans with phonecalls this morning.
Oxford
The booking officer at the John Radcliffe was v patient on the phone this morning. I asked whether she could put a second appointment in just in case the first one on 21 March has to be cancelled through an emergency taking precedence. She doesn't have a rota past March for the consultants, so can't do that yet, but is happy for me to phone her again and put a second one in the diary. She seemed a little wary at first (I don't think it's the usual procedure and I guess would cause problems if everyone did it) but could see the logic. If J is cast on 21 March, then the second date is freed up and that helps others.
She received the faxed form yesterday and it did have "urgent" and "asap" written on it. Shame it wasn't sent start of December. Shame it had the wrong name on it! I have to stop kicking myself for not taking action before now. No good comes of kicking myself! The truth is that Mr N sent a letter to Mr M (copied to me) at the start of December saying that J was on the waiting list for serial casting at Oxford, but he was waiting to hear from me to actually transfer hospitals as I was mulling things over. The wording said he was on the waiting list. So I thought I had time to be sure about things before confirming the transfer. With hindsight I could have confirmed start of December and followed up then so that I knew he actually was on the list. Things would have happened much quicker - and then if I'd been unhappy I could have withdrawn him at any time. But hindsight is wonderful and useless.
We will hear back from Nuffield (Oxford) for the pre-op appointment when they see the entry in the computer system.
United States
Others who have children being treated with Mehta casting in the US said via emails overnight that Shriners (various) and Scottish Rite (Texas) are possible hospitals. There are Europeans being treated there (despite what their websites say about not accepting people from outside the US/Mexico/a few local countries).
My current plan is that I will continue to pursue the US idea until we have evidence with more x-rays about what is actually happening. If J's curves are static still, then the wait till 21 March would be more bearable. If they are getting worse then I would be pulling out all the stops to get treatment ASAP no matter what.
X-rays
I've rung the plaster room at Birmingham to see what's happening (they said yesterday they'd speak to Mr M's secretary). They have been trying to get hold of her, but she's in meetings this morning. She will ring me directly. They were asking to get me a "forced appointment" (ie you don't have an actual appointment, they just fit you in on the day you're there). I wonder how soon that can be.
The whole thing has made me v v v keen to get an x ray asap so that at least we know what's happening inside J's back.
Oxford
The booking officer at the John Radcliffe was v patient on the phone this morning. I asked whether she could put a second appointment in just in case the first one on 21 March has to be cancelled through an emergency taking precedence. She doesn't have a rota past March for the consultants, so can't do that yet, but is happy for me to phone her again and put a second one in the diary. She seemed a little wary at first (I don't think it's the usual procedure and I guess would cause problems if everyone did it) but could see the logic. If J is cast on 21 March, then the second date is freed up and that helps others.
She received the faxed form yesterday and it did have "urgent" and "asap" written on it. Shame it wasn't sent start of December. Shame it had the wrong name on it! I have to stop kicking myself for not taking action before now. No good comes of kicking myself! The truth is that Mr N sent a letter to Mr M (copied to me) at the start of December saying that J was on the waiting list for serial casting at Oxford, but he was waiting to hear from me to actually transfer hospitals as I was mulling things over. The wording said he was on the waiting list. So I thought I had time to be sure about things before confirming the transfer. With hindsight I could have confirmed start of December and followed up then so that I knew he actually was on the list. Things would have happened much quicker - and then if I'd been unhappy I could have withdrawn him at any time. But hindsight is wonderful and useless.
We will hear back from Nuffield (Oxford) for the pre-op appointment when they see the entry in the computer system.
United States
Others who have children being treated with Mehta casting in the US said via emails overnight that Shriners (various) and Scottish Rite (Texas) are possible hospitals. There are Europeans being treated there (despite what their websites say about not accepting people from outside the US/Mexico/a few local countries).
My current plan is that I will continue to pursue the US idea until we have evidence with more x-rays about what is actually happening. If J's curves are static still, then the wait till 21 March would be more bearable. If they are getting worse then I would be pulling out all the stops to get treatment ASAP no matter what.
X-rays
I've rung the plaster room at Birmingham to see what's happening (they said yesterday they'd speak to Mr M's secretary). They have been trying to get hold of her, but she's in meetings this morning. She will ring me directly. They were asking to get me a "forced appointment" (ie you don't have an actual appointment, they just fit you in on the day you're there). I wonder how soon that can be.
The whole thing has made me v v v keen to get an x ray asap so that at least we know what's happening inside J's back.
Wednesday, 11 January 2012
aaaaaaaaaaaaaaaggggggggggggghhhhhhhhhhhh
Not sure how coherent this will be.
Facing the utter madness of the NHS waiting lists. And feeling like screaming.
I contacted Oxford today just to check my letter had been received and to ask about the waiting list. We saw Mr N. on 1st December. J was meant to go on the waiting list as urgent then. His secretary (Ms A) just told me that she only filled out the form last week (6th January). Why????
Apparently Mr N is "on call" at the moment (by which I presume they mean he's doing his private work) and has not yet seen my letter, but it is in his in tray.
His secretary has requested the MRI from Birmingham Children's Hospital she said (goodness knows when and who knows when they'll send it...).
I asked about the waiting list and Mr N's secretary gave me the name and number of the John Radcliffe booking officer (Ms R).
Ms R told me:
1. They have a new computer system and are having problems putting patients on it.
2. The waiting list is 26 weeks, though urgent cases are about 8 weeks.
3. She might be able to slip J in on 21 March (as a provisional date) and took J's details.
4. Cancellations are v v v v v rare so it is most unlikely he'll get an earlier date, though she said she would let me know.
5. There are 5 consultants vying for room in the 2 operating days per week between them (Tues and Wed). There is only room for one child to be operated on on any one day (the ops last for 8 hours, so only one is scheduled).
6. They only do plaster casts on a Wed.
7. If there's an 8 hr child op on a Wed, there won't be any plaster casting that day.
8. They also are an A & E place, so they don't know what's coming in and it can be cancelled.
9. She recommended that I phone Mr N's secretary back and ask her to fax over the booking form so Ms R can see what's written on it.
So I dutifully ring Ms A back. She no longer has the form. She has sent it to Ms W at the Nuffield. She says she'll ring Ms W, but I ask for her number so I can do it myself.
I ring Ms W. She hasn't got the form, but has got his notes. After much rummaging she finds she has got the form. Mr N's secretary used J's middle name as his surname...
(I feel like headbanging the table repeatedly now).
She will fax the form to Ms R at John Radcliffe.
+++++++++++++++++++++++++++++++++++++++++++++++++++++
The bottom line is that we are in limbo at Birmingham and possibly on a waiting list for Oxford. But it's a very long waiting list and although Mr N said he'd put to cast "soon" - does that translate as "urgent" on the booking form??????
The irony is that Mr N's secretary was very clear in my first phone call with her today that it's all in hand and that it's not my role to be phoning/chasing etc.
aaaaaaaaaaaaaaaaaaggggggggggggggggggghhhhhhhhhhhh
Meanwhile we don't know whether the curves are getting worse.
I've just rung Mr M's secretary (J's current consultant) to see whether he can have an x-ray asap, but her phone's on voicemail. So I rang the plaster room and Jo kindly said she'd go over to see Mr M's secretary tomorrow and ring me back. I specifically asked for details about the next x-ray date and asked about my Dec letter as I still haven't heard back about my query regarding spina bifida and J's notes (see earlier blog). Not urgent in the grand scheme of things, but I hope I will hear back at some stage.
WHAT CAN I DO TO SPEED THINGS UP?
Mad ideas come to mind like going to the US for treatment at one of the renowned Mehta casting places (eg a Shriner hospital). But how you get in their system, how much it'd all cost, how we'd manage travel etc etc...
But would it be worth it? At least get that initial cast on J.
We don't even know if 21 March is definite. What if it's cancelled and then we're at the back of the waiting list again????????
These are the things that keep me from sleeping (May was dreadful when we were facing the Birmingham waiting list).
I hope hope hope that there's a way through this. And that the x-rays don't show deterioration in the meantime! Just 5 degrees worse and Mr N was saying about growth rods.
But proper casting could mean the curves get better - never mind fearing deterioration.
Don't know how to finish this blog. So will just end here.
Facing the utter madness of the NHS waiting lists. And feeling like screaming.
I contacted Oxford today just to check my letter had been received and to ask about the waiting list. We saw Mr N. on 1st December. J was meant to go on the waiting list as urgent then. His secretary (Ms A) just told me that she only filled out the form last week (6th January). Why????
Apparently Mr N is "on call" at the moment (by which I presume they mean he's doing his private work) and has not yet seen my letter, but it is in his in tray.
His secretary has requested the MRI from Birmingham Children's Hospital she said (goodness knows when and who knows when they'll send it...).
I asked about the waiting list and Mr N's secretary gave me the name and number of the John Radcliffe booking officer (Ms R).
Ms R told me:
1. They have a new computer system and are having problems putting patients on it.
2. The waiting list is 26 weeks, though urgent cases are about 8 weeks.
3. She might be able to slip J in on 21 March (as a provisional date) and took J's details.
4. Cancellations are v v v v v rare so it is most unlikely he'll get an earlier date, though she said she would let me know.
5. There are 5 consultants vying for room in the 2 operating days per week between them (Tues and Wed). There is only room for one child to be operated on on any one day (the ops last for 8 hours, so only one is scheduled).
6. They only do plaster casts on a Wed.
7. If there's an 8 hr child op on a Wed, there won't be any plaster casting that day.
8. They also are an A & E place, so they don't know what's coming in and it can be cancelled.
9. She recommended that I phone Mr N's secretary back and ask her to fax over the booking form so Ms R can see what's written on it.
So I dutifully ring Ms A back. She no longer has the form. She has sent it to Ms W at the Nuffield. She says she'll ring Ms W, but I ask for her number so I can do it myself.
I ring Ms W. She hasn't got the form, but has got his notes. After much rummaging she finds she has got the form. Mr N's secretary used J's middle name as his surname...
(I feel like headbanging the table repeatedly now).
She will fax the form to Ms R at John Radcliffe.
+++++++++++++++++++++++++++++++++++++++++++++++++++++
The bottom line is that we are in limbo at Birmingham and possibly on a waiting list for Oxford. But it's a very long waiting list and although Mr N said he'd put to cast "soon" - does that translate as "urgent" on the booking form??????
The irony is that Mr N's secretary was very clear in my first phone call with her today that it's all in hand and that it's not my role to be phoning/chasing etc.
aaaaaaaaaaaaaaaaaaggggggggggggggggggghhhhhhhhhhhh
Meanwhile we don't know whether the curves are getting worse.
I've just rung Mr M's secretary (J's current consultant) to see whether he can have an x-ray asap, but her phone's on voicemail. So I rang the plaster room and Jo kindly said she'd go over to see Mr M's secretary tomorrow and ring me back. I specifically asked for details about the next x-ray date and asked about my Dec letter as I still haven't heard back about my query regarding spina bifida and J's notes (see earlier blog). Not urgent in the grand scheme of things, but I hope I will hear back at some stage.
WHAT CAN I DO TO SPEED THINGS UP?
Mad ideas come to mind like going to the US for treatment at one of the renowned Mehta casting places (eg a Shriner hospital). But how you get in their system, how much it'd all cost, how we'd manage travel etc etc...
But would it be worth it? At least get that initial cast on J.
We don't even know if 21 March is definite. What if it's cancelled and then we're at the back of the waiting list again????????
These are the things that keep me from sleeping (May was dreadful when we were facing the Birmingham waiting list).
I hope hope hope that there's a way through this. And that the x-rays don't show deterioration in the meantime! Just 5 degrees worse and Mr N was saying about growth rods.
But proper casting could mean the curves get better - never mind fearing deterioration.
Don't know how to finish this blog. So will just end here.
Tuesday, 10 January 2012
Post casting "wobble"
Every time.
Every single time.
I drop you off at the nursery after we've been to the hospital and am hit by a huge wave of emotion.
I regain my balance later in the day, but it's hard to walk into work straight away.
Why?
You always get upset when I drop you off after casting and walking out when you're so upset is hard hard hard. You don't usually get upset on "normal" work days- we usually have a hug, say goodbye and then you are happy to get involved in what everyone else is doing. I guess it's partly the change in routine - you fell asleep today on the way back and were still quite groggy. Maybe you thought it was a non-nursery day you'd spend with mummy?
It's easier to ignore the impact of scoliosis on our lives day to day. But the hospital days bring it into sharp relief. Today I had to ask about x-rays. You're due your next one in February... but because I've chosen Oxford (that's another blog waiting to be written) and we're on a waiting list for there, we're in limbo at Birmingham. But we need to know whether your curves are getting worse, so we may need to have them at Birmingham anyway.
You were so good at the hospital today - just slight winces when the plasters caught you under your arms. Who wouldn't squirm with that? Lots of singing in the cafe afterwards. Happy, care-free "baaa-baaa-baaing".
(the video clip is from when you were singing in the car - though when you saw I was filming you said "no")
You chose a bright pink cast today - I've been silently daring you to go for that for weeks. Woe betide anyone who says "pink for girls". I think it's a really FUN colour :-)
Now we've had all the colours: red, blue, purple, neon pink...
You chose a fried egg to go with your sausage and mushrooms. Little choices - but big ones in some ways. New things for us.
We were walking down the corridor - you were hand-in-hand with mummy with froggy in your other hand - and a consultant walked past, all smart in his suit. He let out a little cough and you copied him. He turned round, smiling. It made us both smile too.
I don't feel I've had my fill of squishiness this time. I miss my squishy baby so much. Not something I talk about with others much. But it's there. It's a factor in all of this. I asked them to wait with the casting while I held you in just your nappy. Big hug. Big big big squishy hug.
They were all saying how much you've grown. That upsets me. All this precious growth and we're not "using" it with the new casting...
We had a lovely swim on Sunday. You were so happy in the water (each time you're more and more relaxed). You even kicked your legs, copying the other children in the class. You laughed so much when we "whizzed" round and round. It's a shame we won't be able to continue with the swims when you have your Oxford cast - just once every 3 months if we're lucky. But these few times we have managed it recently have been great.
You were so funny in the bath last night. We lined up all your friends (frogs, ducks, hippo, fish) on the side and some were knocked in and some were knocked out of the bath. You wanted to do it again and again. We both laughed at the frogs "weeing" in the potty.
So little one. Back to normal now. You're in the nursery and I'm at work. I hope you have a good day. I'll see you later.
Every single time.
I drop you off at the nursery after we've been to the hospital and am hit by a huge wave of emotion.
I regain my balance later in the day, but it's hard to walk into work straight away.
Why?
You always get upset when I drop you off after casting and walking out when you're so upset is hard hard hard. You don't usually get upset on "normal" work days- we usually have a hug, say goodbye and then you are happy to get involved in what everyone else is doing. I guess it's partly the change in routine - you fell asleep today on the way back and were still quite groggy. Maybe you thought it was a non-nursery day you'd spend with mummy?
It's easier to ignore the impact of scoliosis on our lives day to day. But the hospital days bring it into sharp relief. Today I had to ask about x-rays. You're due your next one in February... but because I've chosen Oxford (that's another blog waiting to be written) and we're on a waiting list for there, we're in limbo at Birmingham. But we need to know whether your curves are getting worse, so we may need to have them at Birmingham anyway.
You were so good at the hospital today - just slight winces when the plasters caught you under your arms. Who wouldn't squirm with that? Lots of singing in the cafe afterwards. Happy, care-free "baaa-baaa-baaing".
(the video clip is from when you were singing in the car - though when you saw I was filming you said "no")
You chose a bright pink cast today - I've been silently daring you to go for that for weeks. Woe betide anyone who says "pink for girls". I think it's a really FUN colour :-)
Now we've had all the colours: red, blue, purple, neon pink...
You chose a fried egg to go with your sausage and mushrooms. Little choices - but big ones in some ways. New things for us.
We were walking down the corridor - you were hand-in-hand with mummy with froggy in your other hand - and a consultant walked past, all smart in his suit. He let out a little cough and you copied him. He turned round, smiling. It made us both smile too.
I don't feel I've had my fill of squishiness this time. I miss my squishy baby so much. Not something I talk about with others much. But it's there. It's a factor in all of this. I asked them to wait with the casting while I held you in just your nappy. Big hug. Big big big squishy hug.
They were all saying how much you've grown. That upsets me. All this precious growth and we're not "using" it with the new casting...
We had a lovely swim on Sunday. You were so happy in the water (each time you're more and more relaxed). You even kicked your legs, copying the other children in the class. You laughed so much when we "whizzed" round and round. It's a shame we won't be able to continue with the swims when you have your Oxford cast - just once every 3 months if we're lucky. But these few times we have managed it recently have been great.
You were so funny in the bath last night. We lined up all your friends (frogs, ducks, hippo, fish) on the side and some were knocked in and some were knocked out of the bath. You wanted to do it again and again. We both laughed at the frogs "weeing" in the potty.
So little one. Back to normal now. You're in the nursery and I'm at work. I hope you have a good day. I'll see you later.
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