JOVIE IS OUT OF INTENSIVE CARE!
Three months old Wednesday and 10weeks in Birminghams intensive care unit. We have been fighting to fine what was wrong, fighting to get the right ventilation, fighting to stay in lucky bed 14! and after all the ups and serious downs we are finally out. Jovies new home is now ward 7, room number 8. A number made famous by Mr Gascoigne so I'm happy enough with that!
The day has not been without its hiccups but we are in positive spirits and hope to God this is the real start of the long journey home. Mixed emotions on leaving the intensive team behind, and a huge debt of gratitude is owed to them. Exhausted yet buzzing about the whole experience. So, so proud of our little girl.
Now for the hard work to really start!
Tuesday, 26 July 2011
Sunday, 24 July 2011
These times, they are a changing.
First update for a wee while. Thankfully because comparatively speaking its been a quiet week or so for the little lady. Jovie has come on brilliantly since all the problems with her trachey were (cue lots of touching wood) sorted. Her personality is really shining through now as she enjoys longer spells awake and begins to develop more and more senses.
Our training continues apace, with both of us having completed a successful full tube change and daily tape changes, which are all parts of her constant care while relying on the trachey, which will be for many years to come.
Jovies improvement was pleasantly noted this weekend by the doctor we owe so much to, the one who saved her life with the emergency insertion of a nasal tube into her throat three weeks ago. She returned from a two week break and was amazed by the difference in jovie. Very pleasing for her, and us.
All this improvement sees us just days away from the next mighty step as we prepare for Jovies move out of intensive care, where she has spent practically her whole life, and onto the ward. A very exciting and equally nerve racking period awaits us as we are well and truly ripped from what in a perverse sort of a way has become a real comfort zone for us. 10 weeks tomorrow jovie has lived in bed 14 (still haven't let them move her despite repeated efforts!) in the Birmingham intensive care unit. Her 2 1/2 weeks in Worcester before that seem a lifetime ago. Now make no mistake about it, the intensive ward of a children's hospital is not a nice place to be. And we've certainly been here long enough, seen enough alarms go off and do not disturb signs go up to know its a place unfortunately some parents are never lucky enough to see their kids get out of. However in the weirdest possible way its been our home for nearly three months now, and next week if all goes to plan (touch that wood again) and we do get out and onto the ward its going to be a strange old feeling. The relationship we have built up with a number of the nurses and the routine we have grown used to will need to be quickly forgotten as we enter the news phase of this crazy, life changing journey we are on. The 18th came and went with no movement and now the plan is to move us on Tuesday, after two false starts last week (through no fault of ours or Jovies) ill believe it when I see it but it seems certain that at some point next week we are off to the ward. Yikes.
From there its a case of getting us trained to do all this from home, and also get us an actual home ready to come out to, a ball which has started to move this week too.
For those who haven't had a chance to come and see jovie post trachey, we are pretty much fully adjusted to it. She continues to grow (ten pounds now!) like any other baby, and the ventilator restricts very little in reality. We have been bathing her, cuddling her for hours on end and to our absolute delight even taking her out around the grounds of the hospital in her modestly coloured pushchair! Jovie sleeps through most of it but its exciting for us at least...
For the two of us normality has began to creep into life as much as it can do at times like these. Iv been distracting myself with football and trying to get my knee better, while Lorn has started to discover the shops of Birmingham (much to the distress of my wallet) and we have both managed to venture out for one night out at least. Small steps for us all but finally all seems settled enough for us to worry more about what lies ahead than what is happening right now. First on the list of future events, the big move and a genuine sad goodbye to some really great people who have looked after our little lady and helped us get through such a dreadful experience.
Our training continues apace, with both of us having completed a successful full tube change and daily tape changes, which are all parts of her constant care while relying on the trachey, which will be for many years to come.
Jovies improvement was pleasantly noted this weekend by the doctor we owe so much to, the one who saved her life with the emergency insertion of a nasal tube into her throat three weeks ago. She returned from a two week break and was amazed by the difference in jovie. Very pleasing for her, and us.
All this improvement sees us just days away from the next mighty step as we prepare for Jovies move out of intensive care, where she has spent practically her whole life, and onto the ward. A very exciting and equally nerve racking period awaits us as we are well and truly ripped from what in a perverse sort of a way has become a real comfort zone for us. 10 weeks tomorrow jovie has lived in bed 14 (still haven't let them move her despite repeated efforts!) in the Birmingham intensive care unit. Her 2 1/2 weeks in Worcester before that seem a lifetime ago. Now make no mistake about it, the intensive ward of a children's hospital is not a nice place to be. And we've certainly been here long enough, seen enough alarms go off and do not disturb signs go up to know its a place unfortunately some parents are never lucky enough to see their kids get out of. However in the weirdest possible way its been our home for nearly three months now, and next week if all goes to plan (touch that wood again) and we do get out and onto the ward its going to be a strange old feeling. The relationship we have built up with a number of the nurses and the routine we have grown used to will need to be quickly forgotten as we enter the news phase of this crazy, life changing journey we are on. The 18th came and went with no movement and now the plan is to move us on Tuesday, after two false starts last week (through no fault of ours or Jovies) ill believe it when I see it but it seems certain that at some point next week we are off to the ward. Yikes.
From there its a case of getting us trained to do all this from home, and also get us an actual home ready to come out to, a ball which has started to move this week too.
For those who haven't had a chance to come and see jovie post trachey, we are pretty much fully adjusted to it. She continues to grow (ten pounds now!) like any other baby, and the ventilator restricts very little in reality. We have been bathing her, cuddling her for hours on end and to our absolute delight even taking her out around the grounds of the hospital in her modestly coloured pushchair! Jovie sleeps through most of it but its exciting for us at least...
For the two of us normality has began to creep into life as much as it can do at times like these. Iv been distracting myself with football and trying to get my knee better, while Lorn has started to discover the shops of Birmingham (much to the distress of my wallet) and we have both managed to venture out for one night out at least. Small steps for us all but finally all seems settled enough for us to worry more about what lies ahead than what is happening right now. First on the list of future events, the big move and a genuine sad goodbye to some really great people who have looked after our little lady and helped us get through such a dreadful experience.
Sunday, 10 July 2011
Like a pig in...
What a difference a few days make. Since the horrendous low of a week ago Friday its been onwards and upwards for our little lady.
Jovies new trachey has been a (touch wood, cross fingers and all that) complete success so far with no more issues of note. As a result we have been able to note forward with learning the skills we will need to eventually get jovie home. Tape changes and all have been successfully completed and we are both feeling much more confident about the road ahead.
Jovie has continued to enjoy her new found 'freedom' and is getting a load more cuddles and attention as a result. Today she had her first proper bath with the trachey, a spell sat in her rocker seat for the first time and to the delight of all around her first spell inside her pushchair. Typically she soaked up all the attention and made the most of her first cuddles with other members of the family. Support from everyone has been great as always with visitors aplenty this week and a particuarly cool custom babygrow impressing all the nurses.
We have been given the preliminary discharge date of July 18th when all being well jovie will be moved out of intensive and onto a ward, a scary yet wonderful prospect. Before then however we will finally get the chance to take jovie out of her immediate bed space when for the first time we will be loading her into the pushchair for a little ride around the hospital. As trivial as it may seem just taking her outside, for her first look at the outside world, is going to be monumental for us. Very excited indeed. Following that we can really start to look ahead at the challenging yet amazing road which lies ahead. After everything we've gone through over the last nine weeks we literally couldn't be happier.
Jovies new trachey has been a (touch wood, cross fingers and all that) complete success so far with no more issues of note. As a result we have been able to note forward with learning the skills we will need to eventually get jovie home. Tape changes and all have been successfully completed and we are both feeling much more confident about the road ahead.
Jovie has continued to enjoy her new found 'freedom' and is getting a load more cuddles and attention as a result. Today she had her first proper bath with the trachey, a spell sat in her rocker seat for the first time and to the delight of all around her first spell inside her pushchair. Typically she soaked up all the attention and made the most of her first cuddles with other members of the family. Support from everyone has been great as always with visitors aplenty this week and a particuarly cool custom babygrow impressing all the nurses.
We have been given the preliminary discharge date of July 18th when all being well jovie will be moved out of intensive and onto a ward, a scary yet wonderful prospect. Before then however we will finally get the chance to take jovie out of her immediate bed space when for the first time we will be loading her into the pushchair for a little ride around the hospital. As trivial as it may seem just taking her outside, for her first look at the outside world, is going to be monumental for us. Very excited indeed. Following that we can really start to look ahead at the challenging yet amazing road which lies ahead. After everything we've gone through over the last nine weeks we literally couldn't be happier.
Sunday, 3 July 2011
Hope on hold
Just when you thought it was safe to start looking forward, life swings round to deliver a knockout punch David Haye would have paid good money for on Saturday night. This came in the form of what was surely the worst moment of the last 8 and a bit weeks so far.
We had a serious fright here on Friday night. Jovies trachey dislodged again and the doctors couldn't force in her breaths with the hand pumped bag. The situation became so bad that they had to give her cpr and a shot of adreneline to keep her heart going. With their usual routine of tube changing and forced breaths not working the doctor on call effectively saved Jovies life by removing the trachey tubes and inserting a nasal tube into the hole in her throat. She had to sit holding it in for over an hour before they could get jovie to theatre. Really thought we were going to lose our little girl right then and there, it was horrendous.
They've inserted a new different size trachey and assessed her airways with a camera. CT scan shows no damage. Jovie spent Saturday sedated, with the drugs stopped this morning allowing her to slowly come round until the docs are sure the bigger trachey is working. They are saying it was getting caught in the wall of her throat hence why it wasn't working even with bag.
As a result of all this our long term confidence in the trachey has taken a pounding while our short term confidence in simply handling jovie has been dealt a major blow. We will spend the next day or two at least watching her closely and praying that she gets on better with her new tubes. Quite honestly its like waiting for the firing squad. The doctors seem prepared for the worst though, with emergency equipment and drugs on hand, just in case.
Our tiredness seems to turning more into cabin fever by the day, with both of us struggling to maintain our cool at times this weekend. Effort, especially on Lornas part, to spend a little bit of time away from the hospital may eventually prove helpful, and more importantly not dwelling on the horrible what-could-have-beens is the only way we can see ourselves getting over this latest setback with our sanity in one piece.
If and when this hurdle has been negotiated, the next step will be for Jovies ventilator to be decided on as currently she still remains on the multi purpose intensive care machine. Thoughts of this and the developments we hope so much that will follow it will however have to wait...
We had a serious fright here on Friday night. Jovies trachey dislodged again and the doctors couldn't force in her breaths with the hand pumped bag. The situation became so bad that they had to give her cpr and a shot of adreneline to keep her heart going. With their usual routine of tube changing and forced breaths not working the doctor on call effectively saved Jovies life by removing the trachey tubes and inserting a nasal tube into the hole in her throat. She had to sit holding it in for over an hour before they could get jovie to theatre. Really thought we were going to lose our little girl right then and there, it was horrendous.
They've inserted a new different size trachey and assessed her airways with a camera. CT scan shows no damage. Jovie spent Saturday sedated, with the drugs stopped this morning allowing her to slowly come round until the docs are sure the bigger trachey is working. They are saying it was getting caught in the wall of her throat hence why it wasn't working even with bag.
As a result of all this our long term confidence in the trachey has taken a pounding while our short term confidence in simply handling jovie has been dealt a major blow. We will spend the next day or two at least watching her closely and praying that she gets on better with her new tubes. Quite honestly its like waiting for the firing squad. The doctors seem prepared for the worst though, with emergency equipment and drugs on hand, just in case.
Our tiredness seems to turning more into cabin fever by the day, with both of us struggling to maintain our cool at times this weekend. Effort, especially on Lornas part, to spend a little bit of time away from the hospital may eventually prove helpful, and more importantly not dwelling on the horrible what-could-have-beens is the only way we can see ourselves getting over this latest setback with our sanity in one piece.
If and when this hurdle has been negotiated, the next step will be for Jovies ventilator to be decided on as currently she still remains on the multi purpose intensive care machine. Thoughts of this and the developments we hope so much that will follow it will however have to wait...
Wednesday, 29 June 2011
The Neverending Story
Well, what to say and where to start!? Jovies op was declared a success on Friday, and on the surface it was exactly that. She has been a more active, calmer and all round happier baby since the trachey was fitted. Her attention is better, we've enjoyed clearer and longer eye contact and there is now a more settled sleeping pattern beginning to form.
It hasn't been without some major stumbles, it took just over 24hrs for jovie to whack the entire trachey out, causing all manner of panic and subsequently emergency alarms and re-attaching. The same happened again the very next day while tonight it was all the more alarming when it seemed to dislodge itself, again causing alarms to be pulled and doctors, nurses and the rest to swarm on bed space 14 like bees to honey. Not fun to see and a huge dent to our confidence in thinking we may not be a million miles from getting her home. In fact its quite simply a clear indication that we are. Miles and bloody miles. Now the trachey disconnecting is one thing, we are both already familiar with reattaching it when that happens, but pulling out of her throat altogether is a serious fright, and something that has to be avoided before we can fulfil the dream of getting our baby home.
Our first meeting with the social workers proved a daunting indicator of the behind the scenes work that needs to be done before we can realise that dream. Along with our training (after jovie is declared 'safe' we both have to be signed off as fit to care for her) there are carers to hire (there will be one with up at all times during the night and possibly occasionally during the day) and the small matter of finding a house to live in! Not to even mention the process of applying for the various financial help which may come our way.
Scary stuff all round. It is nice to be speaking about the future though, however complicated that may be.
Jovie had made suitable progress by Saturday night for us to feel happy enough to slip away for some (relatively) subdued birthday celebrations, so thanks to all who popped along for that.
Its birthdays all round in many ways as jovie was 8 weeks old today, sharing her birthday in a round about sort of a way with her granma, who I sure wish was around to see all this in person!
The plan for the next little while is a case of wait and see really, the ventilation jovie will use long term is yet to be decided, while the docs plan on putting a camera down her trachey tube to check its in the right place on not getting stuck on anything. Apparently for a baby so small the tube is a little long and requires a bit of propping up of sorts to stop it dropping into one lung or the other.
Jovie has outgrown her first clothes as she continues to tolerate her feeds well. Another thank you to everyone for the gifts we've been receiving, and a special mention to the darts and domino players at my uncle Eddies pub in Edinburgh who have raised a generous kitty for us which will be added to the donation we plan to give the Ronald McDonald House charity when we finally get out of this place and the hard work will really start...
It hasn't been without some major stumbles, it took just over 24hrs for jovie to whack the entire trachey out, causing all manner of panic and subsequently emergency alarms and re-attaching. The same happened again the very next day while tonight it was all the more alarming when it seemed to dislodge itself, again causing alarms to be pulled and doctors, nurses and the rest to swarm on bed space 14 like bees to honey. Not fun to see and a huge dent to our confidence in thinking we may not be a million miles from getting her home. In fact its quite simply a clear indication that we are. Miles and bloody miles. Now the trachey disconnecting is one thing, we are both already familiar with reattaching it when that happens, but pulling out of her throat altogether is a serious fright, and something that has to be avoided before we can fulfil the dream of getting our baby home.
Our first meeting with the social workers proved a daunting indicator of the behind the scenes work that needs to be done before we can realise that dream. Along with our training (after jovie is declared 'safe' we both have to be signed off as fit to care for her) there are carers to hire (there will be one with up at all times during the night and possibly occasionally during the day) and the small matter of finding a house to live in! Not to even mention the process of applying for the various financial help which may come our way.
Scary stuff all round. It is nice to be speaking about the future though, however complicated that may be.
Jovie had made suitable progress by Saturday night for us to feel happy enough to slip away for some (relatively) subdued birthday celebrations, so thanks to all who popped along for that.
Its birthdays all round in many ways as jovie was 8 weeks old today, sharing her birthday in a round about sort of a way with her granma, who I sure wish was around to see all this in person!
The plan for the next little while is a case of wait and see really, the ventilation jovie will use long term is yet to be decided, while the docs plan on putting a camera down her trachey tube to check its in the right place on not getting stuck on anything. Apparently for a baby so small the tube is a little long and requires a bit of propping up of sorts to stop it dropping into one lung or the other.
Jovie has outgrown her first clothes as she continues to tolerate her feeds well. Another thank you to everyone for the gifts we've been receiving, and a special mention to the darts and domino players at my uncle Eddies pub in Edinburgh who have raised a generous kitty for us which will be added to the donation we plan to give the Ronald McDonald House charity when we finally get out of this place and the hard work will really start...
Thursday, 23 June 2011
Usain Bolt
A world record holding 100m runner-esque quick blog just to say that all the consent forms have been dotted and crossed and tomorrow jovie will be having her tracheostomy.
Not a moment too soon really after a couple of pretty horrible days for us and uncomfortable nights for her.
Fingers crossed all goes well and ill update in more detail over the weekend.
And so starts the first day of the rest of our lives...
Not a moment too soon really after a couple of pretty horrible days for us and uncomfortable nights for her.
Fingers crossed all goes well and ill update in more detail over the weekend.
And so starts the first day of the rest of our lives...
Thursday, 16 June 2011
The end of the beginning
6 weeks and 13 1/2 hours after Jovies Jeremy Kyle induced early birth.
6 weeks and 13 1/2 hours of worry, upset, fear, wrong diagnosis, stress and upheaval.
6 weeks and 13 1/2 hours of getting to know our gorgeous little girl from the sidelines, showering her in gifts and all the love we could muster.
6 weeks and 13 1/2 hours of waiting and a letter from southmead hospital of all places tells us what we've been waiting for, but dreading all the same.
"Mutations in the gene are associated with CCHS"
In English, jovie has been diagnosed with Central Hyperventilation Syndrome.
The disease, popularly known as ondines curse, is the very problem the top doc here thought it was, and absolutely isn't a muscle disorder (again resisting saying I told you so). In all honesty at this stage, we know very little about it. If you are interested in finding out more about it we found this today - http://www.cchsnetwork.org/ - which looks helpful.
Of the varying degrees of severity, jovie falls somewhere in the middle. It will mean she will need ventilation while asleep for the rest of her life. It also means she may need some help while awake, but should improve with age. It also means the end of our lives as we know them...
...and the start of what will certainly be a scary, incredible, life changing life with our daughter. We are told just 33 cases are active in the UK, barely 200 or so in the states. Almost all are given a good chance of living a full life, albeit a very different one to what we all know.
The shock, relief/horror of it all hasn't quite sank in yet. Being told your daughter has tested positive to a dangerous disease is a strange thing to take, particularly when you know of all the tests that have been done, this is one of the better things to come back positive in many ways.
We are both exhausted with everything that's gone on. Scared about the road that lies ahead but above all else, excited by the prospect of what we hope is at the end of that road.
A new long term ventilation machine is already on order, with a mask to be trialed, which is expected to be quickly abandoned in favour of the tracheostomy mentioned in the previous update. Soon after our training to eventually take jovie home will begin. With her first stop being out of intensive to the ward, then onwards from there. We have been told to expect months of training and meetings with experts, care workers, health care pros and therapists. What it means for us when we are finally approved to look after jovie on our own is anyone's guess. There have already been mentions of housing, full time careers and funding and we haven't even scratched the surface yet.
So, that is that for now. We have our answer, and a million more questions that have raised as a result. Ill keep on with this blog when there's news to report, jovie will one day need to be told she's one of a very special 34 cursed by ondines. I hope we can cope with what lies ahead for our little family. We never thought things would turn out this way, and never imagined we would be dealt this hand. One thing will always remain however tough it gets, while in Worcester one of the many doctors jovie was seen by said it best when he said to us after an especially bad day; no matter what happens, she will always be your daughter.
6 weeks and 13 1/2 hours of worry, upset, fear, wrong diagnosis, stress and upheaval.
6 weeks and 13 1/2 hours of getting to know our gorgeous little girl from the sidelines, showering her in gifts and all the love we could muster.
6 weeks and 13 1/2 hours of waiting and a letter from southmead hospital of all places tells us what we've been waiting for, but dreading all the same.
"Mutations in the gene are associated with CCHS"
In English, jovie has been diagnosed with Central Hyperventilation Syndrome.
The disease, popularly known as ondines curse, is the very problem the top doc here thought it was, and absolutely isn't a muscle disorder (again resisting saying I told you so). In all honesty at this stage, we know very little about it. If you are interested in finding out more about it we found this today - http://www.cchsnetwork.org/ - which looks helpful.
Of the varying degrees of severity, jovie falls somewhere in the middle. It will mean she will need ventilation while asleep for the rest of her life. It also means she may need some help while awake, but should improve with age. It also means the end of our lives as we know them...
...and the start of what will certainly be a scary, incredible, life changing life with our daughter. We are told just 33 cases are active in the UK, barely 200 or so in the states. Almost all are given a good chance of living a full life, albeit a very different one to what we all know.
The shock, relief/horror of it all hasn't quite sank in yet. Being told your daughter has tested positive to a dangerous disease is a strange thing to take, particularly when you know of all the tests that have been done, this is one of the better things to come back positive in many ways.
We are both exhausted with everything that's gone on. Scared about the road that lies ahead but above all else, excited by the prospect of what we hope is at the end of that road.
A new long term ventilation machine is already on order, with a mask to be trialed, which is expected to be quickly abandoned in favour of the tracheostomy mentioned in the previous update. Soon after our training to eventually take jovie home will begin. With her first stop being out of intensive to the ward, then onwards from there. We have been told to expect months of training and meetings with experts, care workers, health care pros and therapists. What it means for us when we are finally approved to look after jovie on our own is anyone's guess. There have already been mentions of housing, full time careers and funding and we haven't even scratched the surface yet.
So, that is that for now. We have our answer, and a million more questions that have raised as a result. Ill keep on with this blog when there's news to report, jovie will one day need to be told she's one of a very special 34 cursed by ondines. I hope we can cope with what lies ahead for our little family. We never thought things would turn out this way, and never imagined we would be dealt this hand. One thing will always remain however tough it gets, while in Worcester one of the many doctors jovie was seen by said it best when he said to us after an especially bad day; no matter what happens, she will always be your daughter.
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