As if spending the last four months in Worcester and now Birmingham hospital hadn't been bad enough, my evenings have just got all the harder to bare with the return of that bloody show. Well, at least Lorna is happy...
Having said that, for all intensive purposes it isn't all that bad here. Sitting and playing with jovie, all be it in a cramped space sandwiched in with the worlds loudest family, could never be described as being that bad.
A minor let down of a week draws to a close having not got the chance to take jovie back to Worcester as had been promised. Wednesday is now the day for our first trip home, apparently. As with much in this bloody place ill believe it when I see it. Tomorrow sees the final box ticked in our training; life support and the emergency drills. Not something we ever want to have to use but the final piece of the jigsaw. Once completed we can take jovie out around the hospital and grounds as much as we like without a nurse, and then once all sorted on the housing front, we. can. go. home!
The light at the end of that tunnel we have heard so much about really does feel like it could be just around the corner.
In many ways, its the knowing we may be going home soon that is making things tricky. Now we know we are going its becoming more and more difficult to put up with being here. Even being asked if we are ok by nurses has become a constant minor annoyance. This whole situation has stretched us to breaking point and we have really just had enough of this place and everyone in here.
A bit like how I feel after two minutes of watching big brother...
Sunday, 21 August 2011
Sunday, 14 August 2011
I predict a riot
All fun and games up in Birmingham this week as we are forced to spend two nights locked in the hospital after the riots hit Birmingham. On one of the nights news swept across Facebook and Twitter that the hospital was under attack, one even claimed it was on fire! As she so often does, jovie slept through the lot. Too young that she is to be sent out to get us a new tv...
Elsewhere we have had good fun watching England destroy India in the cricket together, while the much welcome return of the premier league highlights just how long we've been here.
Jovie herself continues to shine, her weight is good and she tolerates her ventilation perfectly. She now has two different circuits, one connected to a humidifier the other a dry circuit for her to get out and about on. She continues to enjoy her spells in the pushchair and sitting in her car seat too. Her awareness and interaction is brilliant, not sure where she gets her brains from but she's going to be a smart egg that's for sure.
Much to our absolute delight, all being well tomorrow she will get to experience the car seat for real for the very first time as a day trip to Worcester is planned! Another huge milestone on the road to getting home for good.
A road we are very much nearer an end too. Once we have sorted a home to go back to that is. Our training is nearly all done, and even Kelly has began hers. Once finished, and once we secure a house, all of which should be weeks rather than months away we will be good to go! Amazing and frightening in near equal measure.
Personally things haven't been better, with jovie doing so well I was able to make a flying visit over to gay Paris for the bros wedding. Great fun and amazing to see all the family. Was gutted not to have the two girls with me of course but really hoping everyone will get to meet her soon. Lorn is off on her own jaunty very soon with her own trip abroad for the big gay wedding of the year, giving me some quality time with madame! Its weddings galore over the next month and with progress going as well as it is we are genuinely hopeful jovie may be out in time to enjoy some of them too.
As for her condition, no further developments or indication about how she may tolerate breathing independent from the ventilator during the day. Still a little early to tell yet but fingers are permanently crossed and some early indications are quietly promising. Weirdly there is a story in 'love it' magazine this week about a little guy with the same condition as jovie. Disappointingly short and simply written article, but a nice reminder that we are not alone...
Lots to look ahead to over the next little while. Still making the most of the simple little things along the way, bathing, cuddles little smiles and simply being the amazing little character she is. Early plans are in place for a party of all parties once we are finally out of here, to include a charity auction so anyone with any suggestions or items they could put up to be auctioned would be greatly appreciated. Obviously a date will be set once we have a discharge date and all and sundry will be invited!
Elsewhere we have had good fun watching England destroy India in the cricket together, while the much welcome return of the premier league highlights just how long we've been here.
Jovie herself continues to shine, her weight is good and she tolerates her ventilation perfectly. She now has two different circuits, one connected to a humidifier the other a dry circuit for her to get out and about on. She continues to enjoy her spells in the pushchair and sitting in her car seat too. Her awareness and interaction is brilliant, not sure where she gets her brains from but she's going to be a smart egg that's for sure.
Much to our absolute delight, all being well tomorrow she will get to experience the car seat for real for the very first time as a day trip to Worcester is planned! Another huge milestone on the road to getting home for good.
A road we are very much nearer an end too. Once we have sorted a home to go back to that is. Our training is nearly all done, and even Kelly has began hers. Once finished, and once we secure a house, all of which should be weeks rather than months away we will be good to go! Amazing and frightening in near equal measure.
Personally things haven't been better, with jovie doing so well I was able to make a flying visit over to gay Paris for the bros wedding. Great fun and amazing to see all the family. Was gutted not to have the two girls with me of course but really hoping everyone will get to meet her soon. Lorn is off on her own jaunty very soon with her own trip abroad for the big gay wedding of the year, giving me some quality time with madame! Its weddings galore over the next month and with progress going as well as it is we are genuinely hopeful jovie may be out in time to enjoy some of them too.
As for her condition, no further developments or indication about how she may tolerate breathing independent from the ventilator during the day. Still a little early to tell yet but fingers are permanently crossed and some early indications are quietly promising. Weirdly there is a story in 'love it' magazine this week about a little guy with the same condition as jovie. Disappointingly short and simply written article, but a nice reminder that we are not alone...
Lots to look ahead to over the next little while. Still making the most of the simple little things along the way, bathing, cuddles little smiles and simply being the amazing little character she is. Early plans are in place for a party of all parties once we are finally out of here, to include a charity auction so anyone with any suggestions or items they could put up to be auctioned would be greatly appreciated. Obviously a date will be set once we have a discharge date and all and sundry will be invited!
Tuesday, 26 July 2011
Beginning of the end?
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!
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!
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...
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