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...
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