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!
Sunday, 22 May 2011
Roll up! Roll up!
One thing we have learnt during this surreal couple of weeks since Lorns waters broke during an exciting edition of Jeremy Kyle, is that not a lot gets done in hospitals on a weekend.
Jovie, bless her, slept ignorantly through all of yesterday, while we moaned to nurses about doctors and to doctors about nurses. Their plan as it turns out is to change the (clearly not working) medication, take a piece of her muscle for tests and continue the attempt to slowly coax jovie off the ventilator. None of which will happen til Monday. Perhaps the six figure salaries these neurologists are on aren't quite high enough to warrant missing the f1 on a Sunday for...
Also happening on Monday is the horrible scenario of Lorn being left up here alone while some poor sap has to spend the whole day away from his girls at work. Not a fun prospect.
Other random irritations this week: chavs who spend all day watching tv and making a mess in communal living apartments which they are getting for free during supposedly difficult times, doctors you've never seen before telling you things you already know or worse - things that aren't right, nurses who stare at you for uncomfortable lengths of time, men who wear sunglasses inside intensive care units, finding negatives out of positives, having to watch the last day of the football season via the bbc red button, being charged £10 a day to park in a hospital car park & of course, having to go through all this shit at all.
However, any sign of doom and gloom in the Wyse camp today was lifted with guests a plenty (even if the star attraction slept through them all!) and delightfully, a good hour stint of Lorn getting to hold and cuddle jovie outside of her little open top incubator. We even got to dress her for the first time, which beliieve me is a HUGE deal when quality time is looking at your little girl in a fancy fish tank...
So another week bites the dust, one week down here in brum and an opportunity to say another big thank you to everyone who has sent their regards, all the visitors we've had and everyone who is reading this nonsense night after night. We really appreciate all the comments.
Although we are still a long way off any answers, lots has been done this week and with lots already planned for next week, who knows what news we might have come this time next week. Hope you all enjoyed your weekends (Birmingham City fans included).
All the best from the three of us.
Jovie, bless her, slept ignorantly through all of yesterday, while we moaned to nurses about doctors and to doctors about nurses. Their plan as it turns out is to change the (clearly not working) medication, take a piece of her muscle for tests and continue the attempt to slowly coax jovie off the ventilator. None of which will happen til Monday. Perhaps the six figure salaries these neurologists are on aren't quite high enough to warrant missing the f1 on a Sunday for...
Also happening on Monday is the horrible scenario of Lorn being left up here alone while some poor sap has to spend the whole day away from his girls at work. Not a fun prospect.
Other random irritations this week: chavs who spend all day watching tv and making a mess in communal living apartments which they are getting for free during supposedly difficult times, doctors you've never seen before telling you things you already know or worse - things that aren't right, nurses who stare at you for uncomfortable lengths of time, men who wear sunglasses inside intensive care units, finding negatives out of positives, having to watch the last day of the football season via the bbc red button, being charged £10 a day to park in a hospital car park & of course, having to go through all this shit at all.
However, any sign of doom and gloom in the Wyse camp today was lifted with guests a plenty (even if the star attraction slept through them all!) and delightfully, a good hour stint of Lorn getting to hold and cuddle jovie outside of her little open top incubator. We even got to dress her for the first time, which beliieve me is a HUGE deal when quality time is looking at your little girl in a fancy fish tank...
So another week bites the dust, one week down here in brum and an opportunity to say another big thank you to everyone who has sent their regards, all the visitors we've had and everyone who is reading this nonsense night after night. We really appreciate all the comments.
Although we are still a long way off any answers, lots has been done this week and with lots already planned for next week, who knows what news we might have come this time next week. Hope you all enjoyed your weekends (Birmingham City fans included).
All the best from the three of us.
Friday, 20 May 2011
Plus ça change, plus c'est la même chose
"Is it just me, or does anybody see
The new improved tomorrow, isn't what it used to be
Yesterday keeps comin' round, it's just reality
It's the same damn song, with a different melody
The market keeps on crashin, tattered jeans are back in fashion
I tell you one more time with feeling, even though this world is reeling
You're still you and I'm still me, I didn't mean to cause a scene But I guess it's time to roll up our sleeves
The more things change the more they stay the same
The same sunrise, it's just another day"
This was all set to be the most miserable, self pitying post yet. Anyone wandering how jovie got on without the tubes will have to wait for another day, as her breathing was so bad last night we got in this morning to find they weren't even willing to try. With that, depression washes over us in an awesome wave.
A welcome visit for the little mystery from her nanny, auntie Lisa and the schwarzenager-esque mistress nanny to the Wyse family, auntie Kelly aside the day has been filled with a miserable mood and the feeling of limbo which has pretty much taken over our lives. Bickering with each other and an inept nurse hardly helped matters either.
Having said all that, and hence the ripped lyrics above, despite all that, come the end of the day things haven't actually changed much one way or another since yesterday or the day before. A chest scan was clear today ruling out an infection. The current medication has been tweaked and the plan is still to give her a whirl off the system at some point to see how she copes.
In truth tho, what has really cheered us up this evening is our little lady. So determined to make her nurses lives Hell, and so active since her meds she gave her nurse tonight no other choice in the attempt to ensure her wriggling about doesn't dislodge her tubes but to create the worlds first makeshift baby straight jacket. Or as Lorn so delicately put it:
"she looks like E.T!"
The new improved tomorrow, isn't what it used to be
Yesterday keeps comin' round, it's just reality
It's the same damn song, with a different melody
The market keeps on crashin, tattered jeans are back in fashion
I tell you one more time with feeling, even though this world is reeling
You're still you and I'm still me, I didn't mean to cause a scene But I guess it's time to roll up our sleeves
The more things change the more they stay the same
The same sunrise, it's just another day"
This was all set to be the most miserable, self pitying post yet. Anyone wandering how jovie got on without the tubes will have to wait for another day, as her breathing was so bad last night we got in this morning to find they weren't even willing to try. With that, depression washes over us in an awesome wave.
A welcome visit for the little mystery from her nanny, auntie Lisa and the schwarzenager-esque mistress nanny to the Wyse family, auntie Kelly aside the day has been filled with a miserable mood and the feeling of limbo which has pretty much taken over our lives. Bickering with each other and an inept nurse hardly helped matters either.
Having said all that, and hence the ripped lyrics above, despite all that, come the end of the day things haven't actually changed much one way or another since yesterday or the day before. A chest scan was clear today ruling out an infection. The current medication has been tweaked and the plan is still to give her a whirl off the system at some point to see how she copes.
In truth tho, what has really cheered us up this evening is our little lady. So determined to make her nurses lives Hell, and so active since her meds she gave her nurse tonight no other choice in the attempt to ensure her wriggling about doesn't dislodge her tubes but to create the worlds first makeshift baby straight jacket. Or as Lorn so delicately put it:
"she looks like E.T!"
Thursday, 19 May 2011
Walt Disney presents...
Results from recent tests have shown that jovies brain is successfully sending messages to her nerves. The nerves are passing these commands to the muscles and her muscles are performing the actions. Simples. What this means for us is there isn't a fundamental problem with her system, but a syndrome/disease/disorder that is causing the gaps in her breathing.
As with everything it seems this is good and bad news. Obviously its good because everything works, but bad because the docs have little idea what the cause is. Today they ruled out any problems in her ears, eyes or throat and paved the way for the ventilation system which is supporting her system to be switched off.
Great news in some respects (if this were a Disney movie jovie would wake up breathing for herself and we'd all live happily ever after). But then we've been here before (twice in Worcester they took her off, twice they had to put her back on...)
So countdown begins. Hopefully by tomorrow morning they will be ready to remove the tubes and we can see how long jovie lasts breathing unaided. We want to believe she can just defy the odds and do it by herself. More realistically, we hope that however long she manages (13 hours the first time, a week ago Sunday in Worcester is the best so far) the docs can get an idea of what is causing the drops and how her current medication (caffeine and something I can't spell) are benefiting her.
As for us, we've settled in as best we can in Birmingham. We are trying to remain positive and trying not think too much about the horrible reality of having to go back to work next week. We even managed a couple of laughs today at a doctor probably not called Wolfgang and Lorna taking an interest in Islamic extremism.
Really tho we just want our little girl home so we can have our own happy ending.
Fuck you Walt Disney. We want one too.
As with everything it seems this is good and bad news. Obviously its good because everything works, but bad because the docs have little idea what the cause is. Today they ruled out any problems in her ears, eyes or throat and paved the way for the ventilation system which is supporting her system to be switched off.
Great news in some respects (if this were a Disney movie jovie would wake up breathing for herself and we'd all live happily ever after). But then we've been here before (twice in Worcester they took her off, twice they had to put her back on...)
So countdown begins. Hopefully by tomorrow morning they will be ready to remove the tubes and we can see how long jovie lasts breathing unaided. We want to believe she can just defy the odds and do it by herself. More realistically, we hope that however long she manages (13 hours the first time, a week ago Sunday in Worcester is the best so far) the docs can get an idea of what is causing the drops and how her current medication (caffeine and something I can't spell) are benefiting her.
As for us, we've settled in as best we can in Birmingham. We are trying to remain positive and trying not think too much about the horrible reality of having to go back to work next week. We even managed a couple of laughs today at a doctor probably not called Wolfgang and Lorna taking an interest in Islamic extremism.
Really tho we just want our little girl home so we can have our own happy ending.
Fuck you Walt Disney. We want one too.
Tuesday, 17 May 2011
Pinky and The Brain
The doctors have identified that jovie's breathing problem is occurring due to a breakdown somewhere between the brain sending the msg to breathe, the nerves telling the muscles to breathe and the muscles performing the action to breathe. One of those 'sections' is failing at times, the challenge and difficulty is finding out which.
Today was a busy one, and I guess a positive one too. A heart and lung e.c.g ruled out any problems there, while an ultrasound of the diaphragm only highlighted the lack of activity during the periods where jovie offers no effort to breathe herself. This was accompanied by explanations from the docs as to the worst case scenario if this prob isn't fixed, which left us rather worried and upset for most of the morning. (No matter how many times we promise ourselves not to get upset by these conversations, it ain't getting any easier!)
We have promised good news tho and as with everything it comes in threes; they did increase her feed again today and they stopped the morphine she had been on for a day or two.
Best of all though today was the day of the all important MRI scan. Although not definitive this would be a clear indication of if it was the brain we needed to really worry about. Now its hard to explain the feeling you have in these scenarios, we know something is wrong with our little girl, and we are desperate to know what, but as much as you want an answer you also want all the tests to be clear. Well the MRI came back, and while not unblemished, it was clear in all the important areas and with no sign of worrying damage to the brain. A huge relief all round.
For all intensive purposes this rules out the brain at least for now and turns attention towards the nerves and the muscles. Tomorrow they are continuing the attempt to stimulate some more spontaneous breathing while also testing for damage to the nerves. One door closes...another slams in your face.
In other news today, jovie had a nice visit from the Wyse grandparents, Lorna only cried once, we had a welcome fit of giggles thanks to fonejacker in a waiting room and to send us home smiling at least a little, jovie opened her eyes as wide and as aware as we have seen so far.
While real optimism is hard in these situations, we have to try to make the most of the 'good' days.
"And what are we doing tomorrow? The same thing we do every night..."
Today was a busy one, and I guess a positive one too. A heart and lung e.c.g ruled out any problems there, while an ultrasound of the diaphragm only highlighted the lack of activity during the periods where jovie offers no effort to breathe herself. This was accompanied by explanations from the docs as to the worst case scenario if this prob isn't fixed, which left us rather worried and upset for most of the morning. (No matter how many times we promise ourselves not to get upset by these conversations, it ain't getting any easier!)
We have promised good news tho and as with everything it comes in threes; they did increase her feed again today and they stopped the morphine she had been on for a day or two.
Best of all though today was the day of the all important MRI scan. Although not definitive this would be a clear indication of if it was the brain we needed to really worry about. Now its hard to explain the feeling you have in these scenarios, we know something is wrong with our little girl, and we are desperate to know what, but as much as you want an answer you also want all the tests to be clear. Well the MRI came back, and while not unblemished, it was clear in all the important areas and with no sign of worrying damage to the brain. A huge relief all round.
For all intensive purposes this rules out the brain at least for now and turns attention towards the nerves and the muscles. Tomorrow they are continuing the attempt to stimulate some more spontaneous breathing while also testing for damage to the nerves. One door closes...another slams in your face.
In other news today, jovie had a nice visit from the Wyse grandparents, Lorna only cried once, we had a welcome fit of giggles thanks to fonejacker in a waiting room and to send us home smiling at least a little, jovie opened her eyes as wide and as aware as we have seen so far.
While real optimism is hard in these situations, we have to try to make the most of the 'good' days.
"And what are we doing tomorrow? The same thing we do every night..."
Monday, 16 May 2011
Monday, May 16th 2011
Welcome to our first blog about the newest member of the Wyse family, our amazing little lady, Jovie Caroline Wyse.
Jovie was born 5 weeks early on Wednesday, May 4th 2011 at 20:06, weighing 6lbs 11. Right from the off she was a bit of a mystery, somehow managing to tie two knots in her cord, something our midwife had never seen before.
The reason for this blog is to help keep our friends and family up to date with what is going on during this difficult period, because as most of you will know by now, Jovie has been in intensive care since her birth. For those unaware of the details she is generally as healthy as a horse. Everything is where it should be, and works how it should do, however her breathing has been an issue since day one, and from time to time, seemingly without reason or warning it will all but stop. She spent the first 11 days of her life in the neonatal ward at Worcester Royal hospital, whose staff we would like to offer thanks to for all their hard work and effort.
This blog begins as the second chapter of our little journey begins, as today saw jovie moved to Birmingham children's hospital. A move which has also seen both of us move with her, into the (don't laugh) Ronald MacDonald hotel/apartments.
Before we witter on further, its worth taking a second to say what a fantastic place this is, and what a superb charity it is who runs it. Basically its a free very high standard hotel run and funded completely by charity for the families of sick children.
Anyway, its our plan to keep this little blog going charting the progress of our special little mystery, keeping those who are interested updated through the week, while giving us a chance to vent our feelings and try to make it make a little sense while we are at it. They will usually be short and sweet, and not as big a ramble as this! Again, its just a way of keeping people up to date, so please feel free to read as and when you like and drop us a comment too if you like.
So, today was the day we, as our little family, packed up and headed to brum, for how long, we do not know, and to what result we can only guess. Obviously, we come here with huge hope they can help get our little girl fighting fit. The transfer here was flawless, and the team involved deserve huge praise for that. Already we are learning that there are so many people helping jovie, many of who we never get a real chance to thank. The intensive unit at Birmingham was a real shock to the system, a huge open plan floor, with beds children of all ages and equipment as far as you can see. It was also a pleasant surprise as we learnt that each patient has their own nurse and a dedicated team of consultants. More impressive still was the speed and efficiency they worked at and in the space of just five hours jovie had already been given a clean, been fed (they had temporarily stopped her milk for the journey) and the tests were underway. Which is where we are at now, in reality no nearer to our answer but confident we are in the right place and on the right road. Its going to be a long trip, but we will get there together.
Night all.
Jovie was born 5 weeks early on Wednesday, May 4th 2011 at 20:06, weighing 6lbs 11. Right from the off she was a bit of a mystery, somehow managing to tie two knots in her cord, something our midwife had never seen before.
The reason for this blog is to help keep our friends and family up to date with what is going on during this difficult period, because as most of you will know by now, Jovie has been in intensive care since her birth. For those unaware of the details she is generally as healthy as a horse. Everything is where it should be, and works how it should do, however her breathing has been an issue since day one, and from time to time, seemingly without reason or warning it will all but stop. She spent the first 11 days of her life in the neonatal ward at Worcester Royal hospital, whose staff we would like to offer thanks to for all their hard work and effort.
This blog begins as the second chapter of our little journey begins, as today saw jovie moved to Birmingham children's hospital. A move which has also seen both of us move with her, into the (don't laugh) Ronald MacDonald hotel/apartments.
Before we witter on further, its worth taking a second to say what a fantastic place this is, and what a superb charity it is who runs it. Basically its a free very high standard hotel run and funded completely by charity for the families of sick children.
Anyway, its our plan to keep this little blog going charting the progress of our special little mystery, keeping those who are interested updated through the week, while giving us a chance to vent our feelings and try to make it make a little sense while we are at it. They will usually be short and sweet, and not as big a ramble as this! Again, its just a way of keeping people up to date, so please feel free to read as and when you like and drop us a comment too if you like.
So, today was the day we, as our little family, packed up and headed to brum, for how long, we do not know, and to what result we can only guess. Obviously, we come here with huge hope they can help get our little girl fighting fit. The transfer here was flawless, and the team involved deserve huge praise for that. Already we are learning that there are so many people helping jovie, many of who we never get a real chance to thank. The intensive unit at Birmingham was a real shock to the system, a huge open plan floor, with beds children of all ages and equipment as far as you can see. It was also a pleasant surprise as we learnt that each patient has their own nurse and a dedicated team of consultants. More impressive still was the speed and efficiency they worked at and in the space of just five hours jovie had already been given a clean, been fed (they had temporarily stopped her milk for the journey) and the tests were underway. Which is where we are at now, in reality no nearer to our answer but confident we are in the right place and on the right road. Its going to be a long trip, but we will get there together.
Night all.
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