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...
Wednesday, 29 June 2011
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.
Tuesday, 14 June 2011
It's a results game
Another few days since the last blog, and despite rumours in this weeks papers it isn't because Ryan Giggs took an injunction out against us...
As is so often the case everything here ground to a halt over the weekend. We were all prepared for jovie to have a tracheostomy early this week. But as is also so often the case things changed without notice yesterday. Turns out the respiratory doctors want a diagnosis before they agree to the operation. Join the bloody club guys.
In "surprising" news, the results from Jovies muscle dna tests (the ones lost in bristol and recently resent) have come back negative.
This is the dosorder first put forward weeks and weeks ago by a visitiing neurologist in Worcester. A disorder we have worried about and talked about yet never truly believed jovie could have. Yet a disorder the neuros here have almost blindly been concentrating on since we got here.
Anyway, its very good news as it all but certainly means she doesn't have the nasty disorder the neurologists have been certain she has got. This does mean that all the treatment they've given her has done is cause nappy rash, a high heart rate and one fit. Well, like with buses you wait an age for results and they all come at once. On Thursday (God knows how they can know to the exact day) the results for the ondine disorder test should be back with us too.
This explains the newest change, because if jovie DOESN'T have it then a trachy is a must for long term ventilation, and we will literally be back to square one in terms of finding out what's wrong. If she does have the disorder then she will need ventilation only while asleep, which may still be with a trachy but could be something else!! Frustrating, annoying, bloody scary, but at least its something.
As far as how jovie is doing, now she is more active and aware while awake, her breathing drops do seem to be coming less and only when she sleeps, which could support the ondines theory. Her weight is good, so good in fact the little chubber might be having her milk reduced now. She is still causing the nurses grief by pulling out her tubes and wires every time they drop their guard. Lots of new presents have arrived making her little bed space look a little like a zoo! While she has enjoyed a number of visitors over the last week.
Getting back into the world of communication, social networks, replying to most msgs and generally talking to other people has helped me and Lorn find some sense of normality. Sorry again to anyone who I haven't replied to, I'm trying to get round to you all!
Id also like to take the chance to say another big thank you from all three of us to GDL Athletic who are donating money from their annual charity match to the Ronald McDonald House Charity who are doing such a great job here housing all us worried sick parents. While I'm at it, thanks again to everyone for reading and the continued comments about this blog and the kind wishes for us all too.
Will update again on Thursday unless anything exciting happens tomorrow, although it will probably just be to say the results haven't arrived yet!
As is so often the case everything here ground to a halt over the weekend. We were all prepared for jovie to have a tracheostomy early this week. But as is also so often the case things changed without notice yesterday. Turns out the respiratory doctors want a diagnosis before they agree to the operation. Join the bloody club guys.
In "surprising" news, the results from Jovies muscle dna tests (the ones lost in bristol and recently resent) have come back negative.
This is the dosorder first put forward weeks and weeks ago by a visitiing neurologist in Worcester. A disorder we have worried about and talked about yet never truly believed jovie could have. Yet a disorder the neuros here have almost blindly been concentrating on since we got here.
Anyway, its very good news as it all but certainly means she doesn't have the nasty disorder the neurologists have been certain she has got. This does mean that all the treatment they've given her has done is cause nappy rash, a high heart rate and one fit. Well, like with buses you wait an age for results and they all come at once. On Thursday (God knows how they can know to the exact day) the results for the ondine disorder test should be back with us too.
This explains the newest change, because if jovie DOESN'T have it then a trachy is a must for long term ventilation, and we will literally be back to square one in terms of finding out what's wrong. If she does have the disorder then she will need ventilation only while asleep, which may still be with a trachy but could be something else!! Frustrating, annoying, bloody scary, but at least its something.
As far as how jovie is doing, now she is more active and aware while awake, her breathing drops do seem to be coming less and only when she sleeps, which could support the ondines theory. Her weight is good, so good in fact the little chubber might be having her milk reduced now. She is still causing the nurses grief by pulling out her tubes and wires every time they drop their guard. Lots of new presents have arrived making her little bed space look a little like a zoo! While she has enjoyed a number of visitors over the last week.
Getting back into the world of communication, social networks, replying to most msgs and generally talking to other people has helped me and Lorn find some sense of normality. Sorry again to anyone who I haven't replied to, I'm trying to get round to you all!
Id also like to take the chance to say another big thank you from all three of us to GDL Athletic who are donating money from their annual charity match to the Ronald McDonald House Charity who are doing such a great job here housing all us worried sick parents. While I'm at it, thanks again to everyone for reading and the continued comments about this blog and the kind wishes for us all too.
Will update again on Thursday unless anything exciting happens tomorrow, although it will probably just be to say the results haven't arrived yet!
Thursday, 9 June 2011
Quantum Leap
Seeing that I have had messages to blog tonight I guess I better had! Looks like my rambling is in demand, perhaps i have missed my calling in life!
Well ill keep it to the point on account of the fact iv been at work all day and night, jovie has been asleep all day and night and Lorn has been, well, Lorn all day and night.
We had our big meeting with docs, head nurse and neurologists this morning and unsurprisingly the neuros are still certain that jovie is suffering from a muscular disorder. I'm beginning to wander if they need one more case to get a study grant, or money for a staff gym perhaps! The docs disagree and think the brain holds the key so both lines of treatment will continue to be tested, all the while we have to wait for the all important dna results which won't be back for weeks and weeks. The neurologists did however admit that Jovies current meds can cause fits and seizures so they have stopped that as of immediate effect (I just about resisted the urge to say I told you so).
This would all seem like a case of same old, same old. However finally what we also have is a plan of future action. Next week jovie will be going under the knife to have a tracheostomy. This is where a tube is inserted directly into her throat which will connect to (yet another) type of ventilator. Short term this removes the horrible tube from up her nose while also opens up the possibility for long term ventilation. There are hundreds of implications to this. Not least we will be given months of training to learn how to look after jovie in this state. But what it does mean, and what is putting a smile on my face even with the prospect of this pretty horrible scenario, is that eventually it could lead to jovie being moved out of intensive, and then eventually brought home.
Its difficult to even begin to describe how exciting the prospect of even taking jovie downstairs in the hospital is, let alone maybe having her home in a few months time.
Of course it doesn't tell us what's wrong with her. (It looks increasingly likely we won't know that til the results are back in 8 weeks or more). It also doesn't mean things will get better. (There's still the chance of jovie growing out of it. There is also still the chance she may need some level of ventilation for the rest of her life.) What it does give us is more than ever something to focus on and an eventuality to plan for. More than that though, for the first time in five weeks it gives us real hope.
We must continue to take each day as it comes, and pray that they can work out what is causing Jovies breathing problems. We hope she will grow out of it or that a treatment is available. In the meantime however we can allow ourselves to think about what was previously only a dream and what a certain Dr Samuel Beckett spent many an episode searching for: home.
Oh boy.
Well ill keep it to the point on account of the fact iv been at work all day and night, jovie has been asleep all day and night and Lorn has been, well, Lorn all day and night.
We had our big meeting with docs, head nurse and neurologists this morning and unsurprisingly the neuros are still certain that jovie is suffering from a muscular disorder. I'm beginning to wander if they need one more case to get a study grant, or money for a staff gym perhaps! The docs disagree and think the brain holds the key so both lines of treatment will continue to be tested, all the while we have to wait for the all important dna results which won't be back for weeks and weeks. The neurologists did however admit that Jovies current meds can cause fits and seizures so they have stopped that as of immediate effect (I just about resisted the urge to say I told you so).
This would all seem like a case of same old, same old. However finally what we also have is a plan of future action. Next week jovie will be going under the knife to have a tracheostomy. This is where a tube is inserted directly into her throat which will connect to (yet another) type of ventilator. Short term this removes the horrible tube from up her nose while also opens up the possibility for long term ventilation. There are hundreds of implications to this. Not least we will be given months of training to learn how to look after jovie in this state. But what it does mean, and what is putting a smile on my face even with the prospect of this pretty horrible scenario, is that eventually it could lead to jovie being moved out of intensive, and then eventually brought home.
Its difficult to even begin to describe how exciting the prospect of even taking jovie downstairs in the hospital is, let alone maybe having her home in a few months time.
Of course it doesn't tell us what's wrong with her. (It looks increasingly likely we won't know that til the results are back in 8 weeks or more). It also doesn't mean things will get better. (There's still the chance of jovie growing out of it. There is also still the chance she may need some level of ventilation for the rest of her life.) What it does give us is more than ever something to focus on and an eventuality to plan for. More than that though, for the first time in five weeks it gives us real hope.
We must continue to take each day as it comes, and pray that they can work out what is causing Jovies breathing problems. We hope she will grow out of it or that a treatment is available. In the meantime however we can allow ourselves to think about what was previously only a dream and what a certain Dr Samuel Beckett spent many an episode searching for: home.
Oh boy.
Wednesday, 8 June 2011
The plot thickens
For over a week now jovie has been supported by a half-ventilator which breathes at a low rate for her but does allow her to breathe on her own as much as she chooses to. Its not quite full ventilation but not quite minimum support either. The tube from this is inserted about 5.5cm up her nose into the back of her throat. The main problem this causes is the pulling on her nostril when she moves.
That was until last week when jovie seemed to start showing signs of having a cold. Since then the tube has had to be regularly changed after becoming blocked with saliva and snot. For the last two nights running it has had to be emergency removed when its become totally blocked causing jovie to literally choke on the tube that is supposed to be helping her breathe.
It happened for a third time this morning, which in turn set off the most distressing turn of events we've dealt with so far. After the tube change jovie didn't calm down as normal, but instead started to have quite a severe seizure. Cue much panic and action from doctors and nurses.
An ECG was later performed once jovie had calmed down, and it showed a spike in her brain pattern which indicates she has been starved of oxygen in a small part of her brain.
Putting two and two together would indicate that this was caused by the tube blocking. But apparently not so. If it happens again it could mean epilepsy, if it doesn't it may be due to a number of reasons which may or may not fit in with the rest of our ever changing puzzle.
Attention has now fully turned to Jovies brain (the neurologists have STILL been persisting with the muscle disorder theory). Another MRI scan is surely a certainty now in the coming weeks. Yet the next step still seems as clouded as ever. We have our big meeting tomorrow which will hopefully shed some light on the planned road ahead. Its needed as all in all we are firmly in the land of the lost.
We now know jovie definitely has something wrong with her brain, but how serious it is, what caused it, what effect it is having or may have, or even if its the cause of her breathing problems remains a mystery. Incidentally amongst it all jovie has actually gone a good couple of days without many breathing drops of note.
Communication seems to have gone off the boil here, so we have started writing every little thing we see that seems out of sorts down in Jovies little book. The care team has yet to offer the consistency in nurses it promised and all the while jovie fights on oblivious to the growing concern and frustration of her folks.
It was actually her due date today. Happy five week birthday kiddo x
That was until last week when jovie seemed to start showing signs of having a cold. Since then the tube has had to be regularly changed after becoming blocked with saliva and snot. For the last two nights running it has had to be emergency removed when its become totally blocked causing jovie to literally choke on the tube that is supposed to be helping her breathe.
It happened for a third time this morning, which in turn set off the most distressing turn of events we've dealt with so far. After the tube change jovie didn't calm down as normal, but instead started to have quite a severe seizure. Cue much panic and action from doctors and nurses.
An ECG was later performed once jovie had calmed down, and it showed a spike in her brain pattern which indicates she has been starved of oxygen in a small part of her brain.
Putting two and two together would indicate that this was caused by the tube blocking. But apparently not so. If it happens again it could mean epilepsy, if it doesn't it may be due to a number of reasons which may or may not fit in with the rest of our ever changing puzzle.
Attention has now fully turned to Jovies brain (the neurologists have STILL been persisting with the muscle disorder theory). Another MRI scan is surely a certainty now in the coming weeks. Yet the next step still seems as clouded as ever. We have our big meeting tomorrow which will hopefully shed some light on the planned road ahead. Its needed as all in all we are firmly in the land of the lost.
We now know jovie definitely has something wrong with her brain, but how serious it is, what caused it, what effect it is having or may have, or even if its the cause of her breathing problems remains a mystery. Incidentally amongst it all jovie has actually gone a good couple of days without many breathing drops of note.
Communication seems to have gone off the boil here, so we have started writing every little thing we see that seems out of sorts down in Jovies little book. The care team has yet to offer the consistency in nurses it promised and all the while jovie fights on oblivious to the growing concern and frustration of her folks.
It was actually her due date today. Happy five week birthday kiddo x
Tuesday, 7 June 2011
cricket, coincidences & cowboys
The absence of a blog in the last night or two comes down to the fact that almost jack has occurred. The usually quiet weekend came and went while Monday was, barring the much talked about and awaited biopsy, a non event too.
The action came to such a crawl here I'm sure I caught Lorna checking the cricket scores on a few occasions.
Jovies breathing has remained as strong in parts and frustrating in patches as ever. Her drops in oxygen level and breathing rate seem to be coming in clusters, sometimes separated by hours of perfect calmness.
The docs have persisted with the muscle disorder treatment, and we are warned there will be one more to come. Although they have finally agreed that its looking less and less likely the problem is muscle related...
The much talked about care team has been ushered in with about as much use as a chocolate tea pot. Unless you consider coloured card with Jovies name on or cuttings out of Winnie the Pooh as things that are likely to speed her recovery.
On Thursday we have our first meeting with our designated nurses, doctors and neurologists where we are promised answers to our increasingly agitated questions and grumbles. They clearly sense we are bordering on seriously pissed off as we make no secret of our growing frustration at the slow process. For all the tests and drugs they have tried, we are no closer to really knowing what is actually wrong.
Small things to lighten our hearts and moods include Jovies new optical lights which keep her wide eyed and interested while awake. The emergence of a real personality coming through and our increased involvement in Jovies basic care. The foreign doctor who walks like John Wayne has also put more than the odd smile on our faces too. While in completely unrelated small world news, the mother of todays nurse supplied the flowers for our wedding!
On a really negative note, jovie today decided to soil the hallowed badge of the great Tottenham Hotspur by weeing on her spurs blanket. Bill Nicholson would surely be turning in his grave.
The action came to such a crawl here I'm sure I caught Lorna checking the cricket scores on a few occasions.
Jovies breathing has remained as strong in parts and frustrating in patches as ever. Her drops in oxygen level and breathing rate seem to be coming in clusters, sometimes separated by hours of perfect calmness.
The docs have persisted with the muscle disorder treatment, and we are warned there will be one more to come. Although they have finally agreed that its looking less and less likely the problem is muscle related...
The much talked about care team has been ushered in with about as much use as a chocolate tea pot. Unless you consider coloured card with Jovies name on or cuttings out of Winnie the Pooh as things that are likely to speed her recovery.
On Thursday we have our first meeting with our designated nurses, doctors and neurologists where we are promised answers to our increasingly agitated questions and grumbles. They clearly sense we are bordering on seriously pissed off as we make no secret of our growing frustration at the slow process. For all the tests and drugs they have tried, we are no closer to really knowing what is actually wrong.
Small things to lighten our hearts and moods include Jovies new optical lights which keep her wide eyed and interested while awake. The emergence of a real personality coming through and our increased involvement in Jovies basic care. The foreign doctor who walks like John Wayne has also put more than the odd smile on our faces too. While in completely unrelated small world news, the mother of todays nurse supplied the flowers for our wedding!
On a really negative note, jovie today decided to soil the hallowed badge of the great Tottenham Hotspur by weeing on her spurs blanket. Bill Nicholson would surely be turning in his grave.
Friday, 3 June 2011
Jovie by numbers
30. Jovies age in days as of today.
19. Days jovie has spent in brum.
5. Days til Lornas due date!
35. Days early jovie was born.
3. Different types of drugs jovie has been given for a rare muscular disorder it now looks certain she DOESN'T have.
17. ml per hour of infantrini milk jovie is currently being fed.
6'11. Weight at birth.
6'8. Current weight.
14. Jovies current bed number and also my lucky number. So much so I stopped them moving her to a bigger area as part of her new long term care plan.
15. Negative tests jovie has had ranging from viruses to genetic disorders.
19. Different family and friends visitors who have met our little lady.
9. Feeding tubes jovie has managed to pull out when the nurses have not been looking!.
5. Different kinds of ventilator jovie has been on.
2. Hospitals.
60. Rooms at the Ronald Mcdonald hotel/apartments. All of which are totally paid for by the charity through those penny jars in maccies and the generous work of volunteers and fundraisers.
10. £ it costs per day to park at brum hospital without parking pass, it is only tenner for the whole week with one.
16. Nurses on new long term care team, designed to help us get more involved with her day to day care and keep more continuity with her nurses. It also allows us freedom to decorate her bed space and have regular meetings with all her docs.
3. Nurses not in team who have liked the little madame so volunteered to still look after her.
250. Members of staff in the brum intensive unit alone.
130. £ spent during initial week living out of Worcester hospital.
65+. Miles I have to drive each day to get to work and back through the shit hole that is Birmingham.
22. Average number of hours jovie sleeps per day.
6. Weeks it will take before Jovies dna results are back and we may have a clear idea of what is wrong with her. We found out yesterday the first tests have only just been sent after being 'lost' on route to labs in Bristol.
And finally,
2. The number of ladies in my life I love with all my heart and pray each day they are safe and healthy.
19. Days jovie has spent in brum.
5. Days til Lornas due date!
35. Days early jovie was born.
3. Different types of drugs jovie has been given for a rare muscular disorder it now looks certain she DOESN'T have.
17. ml per hour of infantrini milk jovie is currently being fed.
6'11. Weight at birth.
6'8. Current weight.
14. Jovies current bed number and also my lucky number. So much so I stopped them moving her to a bigger area as part of her new long term care plan.
15. Negative tests jovie has had ranging from viruses to genetic disorders.
19. Different family and friends visitors who have met our little lady.
9. Feeding tubes jovie has managed to pull out when the nurses have not been looking!.
5. Different kinds of ventilator jovie has been on.
2. Hospitals.
60. Rooms at the Ronald Mcdonald hotel/apartments. All of which are totally paid for by the charity through those penny jars in maccies and the generous work of volunteers and fundraisers.
10. £ it costs per day to park at brum hospital without parking pass, it is only tenner for the whole week with one.
16. Nurses on new long term care team, designed to help us get more involved with her day to day care and keep more continuity with her nurses. It also allows us freedom to decorate her bed space and have regular meetings with all her docs.
3. Nurses not in team who have liked the little madame so volunteered to still look after her.
250. Members of staff in the brum intensive unit alone.
130. £ spent during initial week living out of Worcester hospital.
65+. Miles I have to drive each day to get to work and back through the shit hole that is Birmingham.
22. Average number of hours jovie sleeps per day.
6. Weeks it will take before Jovies dna results are back and we may have a clear idea of what is wrong with her. We found out yesterday the first tests have only just been sent after being 'lost' on route to labs in Bristol.
And finally,
2. The number of ladies in my life I love with all my heart and pray each day they are safe and healthy.
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