Not much to report today, jovie has been as good as gold by her own sparodic no breathing standards.
Lorn had some good alone time with her and I had a good cuddle this evening. The well rested doctors returned from their long weekends and discussed lots yet did very little.
Last weeks mri results are being looked at again tomorrow, while a muscle biopsy is planned for later this week. Jovies medication continues and the high dose of caffeine she is on is being staggered a little so she doesn't get too dependent.
While our spirits have improved after the horrible weekend the worry and anticipation of what happens next is still thick in the air...
Tuesday, 31 May 2011
Monday, 30 May 2011
Garfield was right about Mondays
Very brief update tonight on account of the fact its been a horrible, horrible weekend. We've been messed around, confused, upset and really pissed off at almost every junction.
Jovie has gone from sailing along nicely with the aid of the new type of ventilator to very nearly being in an emergency situation on two occasions when her breathing dropped to dangerously low levels.
As it turns out, and as is often the case, we are effectively back where we started now, with jovie doing ok with help from the ventilator, contributing minimally to her breathing. The new drugs continue and the doctors remain as puzzled (and increasingly clueless) as ever.
A wise man recently said to me 'tough times don't last, tough people do' the fact I once had to help this same person to get a taxi home naked after losing his toga in a fight doesn't detract from the advice.
I just hope we have what it takes to live up to it.
Jovie has gone from sailing along nicely with the aid of the new type of ventilator to very nearly being in an emergency situation on two occasions when her breathing dropped to dangerously low levels.
As it turns out, and as is often the case, we are effectively back where we started now, with jovie doing ok with help from the ventilator, contributing minimally to her breathing. The new drugs continue and the doctors remain as puzzled (and increasingly clueless) as ever.
A wise man recently said to me 'tough times don't last, tough people do' the fact I once had to help this same person to get a taxi home naked after losing his toga in a fight doesn't detract from the advice.
I just hope we have what it takes to live up to it.
Saturday, 28 May 2011
Be careful what you wish for
Jovie Wyse is 24 days old. In her little life already she has been kept in a giant fish tank while a machine does her breathing. She has been poked and prodded by the finest doctors Worcester (who guessed from meningitis to brain damage but couldn't fine what's wrong with her) to Birmingham (where she has had tests on her brain, lungs, muscles, nerves, head, shoulders, knees and even toes) have to offer.
She has been pumped full of paracetemol, morphine, gaviscon, ketimin, two drugs I can't spell which half the nursing staff hadn't heard of and more caffeine than an Eddie Stobart driver heading from lands end to john o'groats.
After Worcester couldn't figure out what was wrong they shipped us up here. Collectively she must have been seen by 50 nurses and dozens of doctors. She's had new born babies weighing 500g and 6 year old boys who look like the kid from Stuart Little as neighbours.
We've cried over her, laughed over her, argued a little over her, sat staring at monitors all night over her and even grew closer over her.
Throughout all of this jovie has remained an amazing little mystery.
There have been times where we have questioned the hospitals for how they have gone about things. Times we have been excited enough by progress to allow ourselves to get excited about the things we so want more than any other and there have been times where all hope has completely escaped us.
What we haven't had, and what jovie hasn't had, is any kind of an answer. Yes we've had guesses. Some logical, some ridiculous. But we have had no answer as to what is actually wrong with our little girl.
Now i wouldn't wish all this on an arsenal fan, but if anyone is ever in this position, the one thing you want more than ever is an answer. Perhaps we are too stupid to deal with things without a reason, perhaps we just need to know what's coming next. The desire for an answer is so strong you find yourself hoping tests come back positive, just to explain things. Its literally the most horrible feeling ever.
Well we still don't have one.
However, for the first time today, something seems to have clicked. So we have another guess, but one that makes sense.
A scan of jovies brain stem activity has revealed a problem in the area concerning respiratory action. The caffeine treatment was a predictable failure today. But rather than the docs going off on another tangent they have decided to finally call a spade a spade. Or in our case, a respiratory disease a respiratory disease.
They are by no means certain but the thinking now is that jovie is suffering from a rare disorder called congenital central hypoventilation syndrome. Its a sleep disorder often refered to as ondines curse after an old tale about a man who cheated on a nympth who was then cursed to forget to breathe when he slept.
While its not guaranteed that this is what jovie has, the docs have been wrong more than once with their diagnosis, it is what they are currently treating her for. This involves a new type of ventilation which keeps her breathing regularly and allows her to sleep without having to be physically forced to start breathing as and when she has one of her moments.
Again its a time thing. The actual test for the disease may take weeks to come back, and jovie may require another mri scan in the meantime. But for now at least it gives us an answer, which we've been wishing for...
BUT. The problem now is not only do we have something to concentrate on, we have a very serious potential to worry about. In the grand scheme of things if it does turn out to be this syndrome, then it could have been a lot worse. We are told people can live relatively normal lives with it and even in some cases grow out of it.
Does this stop us worrying about it?
There's more chance of Barcelona playing a long ball.
She has been pumped full of paracetemol, morphine, gaviscon, ketimin, two drugs I can't spell which half the nursing staff hadn't heard of and more caffeine than an Eddie Stobart driver heading from lands end to john o'groats.
After Worcester couldn't figure out what was wrong they shipped us up here. Collectively she must have been seen by 50 nurses and dozens of doctors. She's had new born babies weighing 500g and 6 year old boys who look like the kid from Stuart Little as neighbours.
We've cried over her, laughed over her, argued a little over her, sat staring at monitors all night over her and even grew closer over her.
Throughout all of this jovie has remained an amazing little mystery.
There have been times where we have questioned the hospitals for how they have gone about things. Times we have been excited enough by progress to allow ourselves to get excited about the things we so want more than any other and there have been times where all hope has completely escaped us.
What we haven't had, and what jovie hasn't had, is any kind of an answer. Yes we've had guesses. Some logical, some ridiculous. But we have had no answer as to what is actually wrong with our little girl.
Now i wouldn't wish all this on an arsenal fan, but if anyone is ever in this position, the one thing you want more than ever is an answer. Perhaps we are too stupid to deal with things without a reason, perhaps we just need to know what's coming next. The desire for an answer is so strong you find yourself hoping tests come back positive, just to explain things. Its literally the most horrible feeling ever.
Well we still don't have one.
However, for the first time today, something seems to have clicked. So we have another guess, but one that makes sense.
A scan of jovies brain stem activity has revealed a problem in the area concerning respiratory action. The caffeine treatment was a predictable failure today. But rather than the docs going off on another tangent they have decided to finally call a spade a spade. Or in our case, a respiratory disease a respiratory disease.
They are by no means certain but the thinking now is that jovie is suffering from a rare disorder called congenital central hypoventilation syndrome. Its a sleep disorder often refered to as ondines curse after an old tale about a man who cheated on a nympth who was then cursed to forget to breathe when he slept.
While its not guaranteed that this is what jovie has, the docs have been wrong more than once with their diagnosis, it is what they are currently treating her for. This involves a new type of ventilation which keeps her breathing regularly and allows her to sleep without having to be physically forced to start breathing as and when she has one of her moments.
Again its a time thing. The actual test for the disease may take weeks to come back, and jovie may require another mri scan in the meantime. But for now at least it gives us an answer, which we've been wishing for...
BUT. The problem now is not only do we have something to concentrate on, we have a very serious potential to worry about. In the grand scheme of things if it does turn out to be this syndrome, then it could have been a lot worse. We are told people can live relatively normal lives with it and even in some cases grow out of it.
Does this stop us worrying about it?
There's more chance of Barcelona playing a long ball.
Friday, 27 May 2011
For fork sake
We have mentioned a couple of times how not much happens on the weekends around here. For once though it seems that this weekend will be a little different due to an interesting fork in the road we seem to have come to.
After countless tests, bloods and a handful of trial treatments finally today a test result came back with some kind of sign as to what might be wrong with jovie. A detailed test of her ears and brain stem reactions has revealed that there is a slight delay in the respiratory part of her brain stem. Logic may dictate that this would be an obvious answer to our little conundrum, but apparently its not quite that simple.
If indeed it is this delay in the brain stem that is the problem, the docs say that a simple kick up the arse will sort the breathing problems. The slight kick being a hefty dose of caffeine. Now the observant readers of this blog will point out that jovie has been on caffeine before (in actual fact she has been pretty much from day dot) and that it would be rather odd for that to suddenly become the answer to our prayers, when its seemingly done bigger all before. It was hardly a surprise to us then, that now 12 hours later, we have seen no sign of improvement in her breathing.
It seems if it looks like a horse, smells like a horse and sounds like a horse, its probably a cabbage.
The coffee trial will continue until tomorrow when if improvement still isn't seen, that road will be closed for now and the other route will be taken.
That other route again focuses on drugs for the rare genetic disorder that they still feel jovie may have, and which could in theory be causing exhaustion specific enough to affect just the breathing part of the brain stem. This fancy treatment apparently costs £80 per single pill.
If you were ever one to wander where the money you pay the nhs goes, well now you know.
For us, all this just raises more questions, more confusion and to be honest more upset. The diagnosis sounded so promising earlier today that the caffeine may be the answer, yet now if it isn't (which looks certain) we are faced with yet another horrible wait to see if another random drug has the desired effect, and then what if it doesn't?
As for the little lady herself, she continues to sleep through most of it. Blissfully unaware of all the fuss and bother going on around her. She had another batch of visitors today, including her great granny, thank you again to everyone who has visited and sent messages over the last 23 days.
By tomorrow we will have confirmation if the caffeine ain't working, and jovie will be on to the next treatment.
Some definitive answers sure would be nice.
After countless tests, bloods and a handful of trial treatments finally today a test result came back with some kind of sign as to what might be wrong with jovie. A detailed test of her ears and brain stem reactions has revealed that there is a slight delay in the respiratory part of her brain stem. Logic may dictate that this would be an obvious answer to our little conundrum, but apparently its not quite that simple.
If indeed it is this delay in the brain stem that is the problem, the docs say that a simple kick up the arse will sort the breathing problems. The slight kick being a hefty dose of caffeine. Now the observant readers of this blog will point out that jovie has been on caffeine before (in actual fact she has been pretty much from day dot) and that it would be rather odd for that to suddenly become the answer to our prayers, when its seemingly done bigger all before. It was hardly a surprise to us then, that now 12 hours later, we have seen no sign of improvement in her breathing.
It seems if it looks like a horse, smells like a horse and sounds like a horse, its probably a cabbage.
The coffee trial will continue until tomorrow when if improvement still isn't seen, that road will be closed for now and the other route will be taken.
That other route again focuses on drugs for the rare genetic disorder that they still feel jovie may have, and which could in theory be causing exhaustion specific enough to affect just the breathing part of the brain stem. This fancy treatment apparently costs £80 per single pill.
If you were ever one to wander where the money you pay the nhs goes, well now you know.
For us, all this just raises more questions, more confusion and to be honest more upset. The diagnosis sounded so promising earlier today that the caffeine may be the answer, yet now if it isn't (which looks certain) we are faced with yet another horrible wait to see if another random drug has the desired effect, and then what if it doesn't?
As for the little lady herself, she continues to sleep through most of it. Blissfully unaware of all the fuss and bother going on around her. She had another batch of visitors today, including her great granny, thank you again to everyone who has visited and sent messages over the last 23 days.
By tomorrow we will have confirmation if the caffeine ain't working, and jovie will be on to the next treatment.
Some definitive answers sure would be nice.
Wednesday, 25 May 2011
Deja vu
Saturday 7th May.
After two days of progress under full ventilation, jovie is taken down to the support ventilator (called cpap) and then off the machines all together to breath all by herself.
Wednesday 25th May
After two days of progress under full ventilation, jovie is taken down to the support ventilator (called cpap) and then off the machines all together to breath all by herself.
Saturday 7th May.
Breathing completely unaided and with only minor blips along the way jovie goes 12 hours breathing on her own.
Wednesday 25th May.
Breathing completely unaided and with only minor blips along the way jovie goes 9 hours breathing on her own.
Saturday 7th May
We get excited by jovies progress and start to hope we will soon have her home. The one thing we want more than any other in world.
Wednesday 25th May
We get excited by jovies progress and start to hope we will soon have her home. The one thing we want more than any other in world.
Saturday 7th May.
Jovie has visitors, all of who leave seemingly with the knowledge that a corner has been turned and its only a matter of time before this nightmare is over. We allow ourselves similar thoughts as we contemplate jovie coming out of intensive.
Wednesday 25th May.
Jovie has visitors, all of who leave seemingly with the knowledge that a corner has been turned and its only a matter of time before this nightmare is over. We allow ourselves similar thoughts as we contemplate jovie coming out of intensive.
Saturday 7th May.
Jovies breathing starts to become more erratic. Her stats drop alarmingly and the doctors are forced to put her back on full ventilation. We are distraught and can't see anything passed the worst case scenarios. All of our previous joy and hope is ripped from us.
Wednesday 25th May.
Jovies breathing starts to become more erratic... Yet while her stats are safe the doctors are forced to put her back on minor ventilation.
Saturday 7th May
We promise ourselves not to get overly excited by potential progress and good news. Or likewise too downhearted about bad news or stumbles in the road.
Wednesday 25th May
Despite promising ourselves not to get overly excited by potential progress and good news or likewise too downhearted about bad news or stumbles in the road...... (You can see where this is going)
Are we living in groundhog day? For a while this evening, even after such a good day, angry and fed up we would have said yes. But progress is progress. Jovie IS in a much better position than she was on that Saturday in Worcester. But fuck me this is hard. Its impossible not to get excited when progress seems so promising just as its impossible not to fear the worst when problems arise. We keep telling ourselves this. We just won't listen. Are we living in groundhog day? For a while this evening, even after such a good day, angry and fed up we would have said yes. But progress is progress. Jovie IS in a much better position than she was on that Saturday in Worcester. But fuck me this is hard. Its impossible not to get excited when progress seems so promising just as its impossible not to fear the worst when problems arise. We keep telling ourselves this. We just won't listen. Are we living in groundhog day...
After two days of progress under full ventilation, jovie is taken down to the support ventilator (called cpap) and then off the machines all together to breath all by herself.
Wednesday 25th May
After two days of progress under full ventilation, jovie is taken down to the support ventilator (called cpap) and then off the machines all together to breath all by herself.
Saturday 7th May.
Breathing completely unaided and with only minor blips along the way jovie goes 12 hours breathing on her own.
Wednesday 25th May.
Breathing completely unaided and with only minor blips along the way jovie goes 9 hours breathing on her own.
Saturday 7th May
We get excited by jovies progress and start to hope we will soon have her home. The one thing we want more than any other in world.
Wednesday 25th May
We get excited by jovies progress and start to hope we will soon have her home. The one thing we want more than any other in world.
Saturday 7th May.
Jovie has visitors, all of who leave seemingly with the knowledge that a corner has been turned and its only a matter of time before this nightmare is over. We allow ourselves similar thoughts as we contemplate jovie coming out of intensive.
Wednesday 25th May.
Jovie has visitors, all of who leave seemingly with the knowledge that a corner has been turned and its only a matter of time before this nightmare is over. We allow ourselves similar thoughts as we contemplate jovie coming out of intensive.
Saturday 7th May.
Jovies breathing starts to become more erratic. Her stats drop alarmingly and the doctors are forced to put her back on full ventilation. We are distraught and can't see anything passed the worst case scenarios. All of our previous joy and hope is ripped from us.
Wednesday 25th May.
Jovies breathing starts to become more erratic... Yet while her stats are safe the doctors are forced to put her back on minor ventilation.
Saturday 7th May
We promise ourselves not to get overly excited by potential progress and good news. Or likewise too downhearted about bad news or stumbles in the road.
Wednesday 25th May
Despite promising ourselves not to get overly excited by potential progress and good news or likewise too downhearted about bad news or stumbles in the road...... (You can see where this is going)
Are we living in groundhog day? For a while this evening, even after such a good day, angry and fed up we would have said yes. But progress is progress. Jovie IS in a much better position than she was on that Saturday in Worcester. But fuck me this is hard. Its impossible not to get excited when progress seems so promising just as its impossible not to fear the worst when problems arise. We keep telling ourselves this. We just won't listen. Are we living in groundhog day? For a while this evening, even after such a good day, angry and fed up we would have said yes. But progress is progress. Jovie IS in a much better position than she was on that Saturday in Worcester. But fuck me this is hard. Its impossible not to get excited when progress seems so promising just as its impossible not to fear the worst when problems arise. We keep telling ourselves this. We just won't listen. Are we living in groundhog day...
Tuesday, 24 May 2011
A singing rooster once said: "sometimes ups, outnumber the downs."
I don't tend to listen to. roosters all too much, but sometimes that may well be the case.
As of writing this jovie has gone nearly 36 hours on the minimum amount of breathing support. The longest period she has effectively been supporting herself (she is not completely ventilator free, but what she is on is the least support you can have). In that time she has shown just two drops in her breathing, both rectified easily enough. Lots more visitors have been in to see her, Kelly even managed to get chatted up by a bloke with no teeth...
The doctors seem to have lots of tests planned - repeat Mri scan, ultra sound to check her diaphragm, various bloods - all of which seem to be a little on hold as her recent progress has caught them a bit by surprise. More waiting and watching for the next couple of days it would seem.
Jovies medication (the one I can't spell) has been halted as a test to see if it was the cause of her improvement. So far no sign of anymore or less struggle without it. While the biggest problem at least for now seems to be a nasty case of nappy rash (jovie, not Lorna).
Cause for optimism for sure then. The tubes that are currently attached are fitted with a simple nose mask, so no nasty tubes down the throat, which means cuddles for us and a much louder when crying jovie!
Perhaps the rooster was right about the ups. However, its hard not to be cautious at times like these. Two moments of no breathing is still two too many for jovie to be even close to breathing independently. While another question mark has emerged with a rise in her heart rate.
Still lots of questions to be answered. But with the admittance in the intensive ward of a serious car crash victim shaking us all up tonight, I can't help but look at this little girl of ours, and despite still not knowing what is wrong with her (and as cliche as it is) feel happy for the fact that things could be a lot worse.
I don't tend to listen to. roosters all too much, but sometimes that may well be the case.
As of writing this jovie has gone nearly 36 hours on the minimum amount of breathing support. The longest period she has effectively been supporting herself (she is not completely ventilator free, but what she is on is the least support you can have). In that time she has shown just two drops in her breathing, both rectified easily enough. Lots more visitors have been in to see her, Kelly even managed to get chatted up by a bloke with no teeth...
The doctors seem to have lots of tests planned - repeat Mri scan, ultra sound to check her diaphragm, various bloods - all of which seem to be a little on hold as her recent progress has caught them a bit by surprise. More waiting and watching for the next couple of days it would seem.
Jovies medication (the one I can't spell) has been halted as a test to see if it was the cause of her improvement. So far no sign of anymore or less struggle without it. While the biggest problem at least for now seems to be a nasty case of nappy rash (jovie, not Lorna).
Cause for optimism for sure then. The tubes that are currently attached are fitted with a simple nose mask, so no nasty tubes down the throat, which means cuddles for us and a much louder when crying jovie!
Perhaps the rooster was right about the ups. However, its hard not to be cautious at times like these. Two moments of no breathing is still two too many for jovie to be even close to breathing independently. While another question mark has emerged with a rise in her heart rate.
Still lots of questions to be answered. But with the admittance in the intensive ward of a serious car crash victim shaking us all up tonight, I can't help but look at this little girl of ours, and despite still not knowing what is wrong with her (and as cliche as it is) feel happy for the fact that things could be a lot worse.
Monday, 23 May 2011
Move along, nothing to see here...
No blog as such tonight on account of the fact I have been at work all day (in brief - not as bad as I had feared, and was pleasantly surprised by more than one person) and that Lorna can't read.
Jovie has had a good day with regards to her breathing, more of which will be explained in a full waffle tomorrow!
The main reason for this little post was just to share my utter delight that after popping in to say goodnight tonight I got to hold our little darling for over half an hour! Amazing feeling.
Now, sleep is in order as leaving again for work in 5 hours, night all!
Jovie has had a good day with regards to her breathing, more of which will be explained in a full waffle tomorrow!
The main reason for this little post was just to share my utter delight that after popping in to say goodnight tonight I got to hold our little darling for over half an hour! Amazing feeling.
Now, sleep is in order as leaving again for work in 5 hours, night all!
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