Jovie Caroline Wyse was born in Worcester Royal hospital on Wednesday, 4th May 2011. She was five weeks early and as a result was taken away after birth for routine checks. As it turned out this saved her life as she soon stopped breathing and ended up in an incubator in the PICU ward.
It became apparent very early on that all was not right with jovie as she was unable to maintain breathing for herself, and despite a number of attempts to wean her off ventilation, the doctors at Worcester were unable to find an answer.
A move to Birmingham Children's Hospital followed, where jovie continued to progress in all areas, however she still showed little or no sign of breathing for herself while sleeping or while unwell.
After a number of failed diagnosis and attempted medication, some with nasty side effects, Jovie was tested, and subsequently found to have Congenital Central Hypoventilation Syndrome. The condition, known as ondines curse, effects the central nervous system preventing Jovie from breathing for herself while she sleeps.
As a result of this Jovie was fitted with a tracheostomy and connected 24 hours a day to a ventilator. In time it is hoped that this ventilation will only be required at night, which one day may lead to the trachey being removed. encouragingly already Jovie enjoys time disconnected from the vent during the day while wide awake.
Due to issues related to her condition and having a trachey, Jovie has never been bottle fed, instead she relied on a NG through her nose. Recently this was removed and replaced with a gastrostomy directly into her stomach. She is given her milk this way, while also enjoying solids throughout the day too.
On a daily basis Jovie requires extra care due to her condition, with regular help to clear her throat with the use of a suction machine. Every morning she has Physio which helps loosen up any thick secretions on her chest. Jovie has two types of circuit, one which is water based, which is easier for her but far less mobile, and one which allows for jovie to be transported, moved around and active like any other child. However this dry circuit can cause more thickness on her chest so needs to be used in moderation.
As parents we have had to be trained to look after Jovie and her equipment. Her trachey and gastrostomy require daily cleaning, while her trachey tube must also be changed once per week. There is also a level of life support and emergency first aid which you must be comfortable with in order to look after Jovie. One of the hardest things to deal with is having family and friends who are unable to be left alone or trusted with Jovie as they have not had any training. At night Jovie is supervised by a professional carer at all times, she cannot be left alone for any length of time due to the importance of ensuring she remains connected to the equipment, that the equipment is working and that she remains ventilated.
Jovie will have her condition for life, but we will never allow it to hold her back in any way. We hope she will eventually only require night time ventilation, and technological advances can only help this become reality. Whatever the future brings we will always be here for her. Throughout the last seven months when those around her have flapped, panicked and failed, jovie has remained a shining inspiration to us all. She has the personality of children twice her age and more heart and courage than most adults.
Yesterday jovie was finally discharged from hospital and we got to bring her home. She smiled and laughed when we put in her bed for the first time, and did the same when she woke up in it for the first time this morning.
I felt like a proper dad for the first time last night, and i have never been more proud of both Jovie and Lorna than seeing them in our house together this morning.
I have no idea how we will get on as parents, but I'm glad we finally have the chance to find out...
Tuesday, 29 November 2011
Monday, 28 November 2011
Charity Auction in aid of Ronald McDonald House Charity Birmingham
JOVIE WYSE HOMECOMING / CHARITY AUCTION IN AID OF THE RONALD MCDONALD HOUSE CHARITY AUCTION (Birmingham)
ITEMS AVAILABLE TO BID FOR;
Signed photos of legendary Liverpool players including Bruce Grobbelaar & Jan Molby
Family ticket (two adults, two kids) to a Worcester Warriors game of your choice
Tickets to a Worcestershire County Cricket Club game of your choice
A round of golf for 4 at the prestigious Henbury Golf Club in Bristol (worth £135)
Thermae Bath Spa Vouchers, Britain’s only natural thermae spa
1 Week in family caravan on site near St Tropez in Southern France (between April & July or after Aug 31st. T&Cs apply, worth between £250 & £400)
Signed Ricky 'Hitman' Hatton boxing glove.
Signed UFC promotional photos, Rashad Evans & Ross Pearson.
Worcester Warriors executive box for cup game on December 17th. For up to 10 people including three course meal and 5 bottles of wine.
Tan and massage at Belle Beauty in Malvern.
Signed Fulham FC home shirt
4x tickets to Birmingham City v Blackpool
'Little Puds' baby hamper
All proceeds go directly to Ronald McDonald House in Birmingham. A charity home from home accom for families who have children staying in Birmingham Children's Hospital.
Please come and welcome jovie home on Sunday from 5pm at the Marwood pub on the Tything, Worcester. Auction will take place from about 7pm. There will also be a raffle with vouchers, jewellery and other delights on offer on the night.
Whether or not you can make the do on Sunday there are some FANTASTIC items available so please, please register your bids. All items must go!
To bid on any of the items,
E-mail me christiano_wyse@hotmail.co.uk
Text/ring me 07825788729
Facebook me or tweet @sunners14.
Spread the word, get your hands in your pockets and help us say a special thank you to the RMHC in Birmingham.
To reiterate, you do not need to know us or jovie, and you do not need to be coming to the party to bid. Please contact me NOW with your offers!
ITEMS AVAILABLE TO BID FOR;
Signed photos of legendary Liverpool players including Bruce Grobbelaar & Jan Molby
Family ticket (two adults, two kids) to a Worcester Warriors game of your choice
Tickets to a Worcestershire County Cricket Club game of your choice
A round of golf for 4 at the prestigious Henbury Golf Club in Bristol (worth £135)
Thermae Bath Spa Vouchers, Britain’s only natural thermae spa
1 Week in family caravan on site near St Tropez in Southern France (between April & July or after Aug 31st. T&Cs apply, worth between £250 & £400)
Signed Ricky 'Hitman' Hatton boxing glove.
Signed UFC promotional photos, Rashad Evans & Ross Pearson.
Worcester Warriors executive box for cup game on December 17th. For up to 10 people including three course meal and 5 bottles of wine.
Tan and massage at Belle Beauty in Malvern.
Signed Fulham FC home shirt
4x tickets to Birmingham City v Blackpool
'Little Puds' baby hamper
All proceeds go directly to Ronald McDonald House in Birmingham. A charity home from home accom for families who have children staying in Birmingham Children's Hospital.
Please come and welcome jovie home on Sunday from 5pm at the Marwood pub on the Tything, Worcester. Auction will take place from about 7pm. There will also be a raffle with vouchers, jewellery and other delights on offer on the night.
Whether or not you can make the do on Sunday there are some FANTASTIC items available so please, please register your bids. All items must go!
To bid on any of the items,
E-mail me christiano_wyse@hotmail.co.uk
Text/ring me 07825788729
Facebook me or tweet @sunners14.
Spread the word, get your hands in your pockets and help us say a special thank you to the RMHC in Birmingham.
To reiterate, you do not need to know us or jovie, and you do not need to be coming to the party to bid. Please contact me NOW with your offers!
Wednesday, 16 November 2011
All I want for Christmas... IS TO GO HOME!
Belated update time, and wow what a month its been. More ups and downs than a rollercoaster, with everything from ufc wrestlers to meetings with Santa going on in our little world of jovie!
Since the last blog we have had fantastic news with the house all but ready, a discharge firmly set for the 28th November and Jovies gastrostomy operation FINALLY completed. We've had visits from great grandparents, presents galore and a load of work on our hands to get both the house ready, and our homecoming charity auction.
Now the light at the end of the tunnel is upon us the last six and a half months seem like a distant nightmare, and while the true reflection will probably come once we are home we are finally truly looking forward to getting home.
The seriousness and sadness of this place was driven home this week as we lent our pushchair to a family we've spoken to a couple of times, whose poor little boy, like jovie has spent his life in hospital, difference being they aren't expected to get home. Horrible, and lending them our pushchair for the chance to take their little boy outside was not only the least we could do, but a reminder of just how much worse things could have been for us.
Issues with the care at the hospital, and various other annoyances persist, yet with the 28th growing nearer and nearer all focus is turning to life after Birmingham! Thank fuck!!
Jovie continues to thrive and shine through it all. She is now 14lbs 14 and is nearly as tall as her mum! She has found her feet now and continues to play with anything she can get her hands on. She continues to enjoy her milk and is now eating a large amount of solids each day. With more room around her stoma we even managed to hear her cry the other day, an amazing feeling!
A huge couple of weeks await us, the huge challenge of putting the months of training and practice into operation and looking after jovie at home ourselves awaits, we hope we are up to it.
Home for Christmas! And a huge party to celebrate on December 4th at the Marwood in Worcester. Auction items still needed and much appreciated. A full list of items to follow to allow people not attending to bid, with all proceeds going to Ronald McDonald House Charity who have been fantastic to us throughout our time in Birmingham.
Fingers and toes crossed and wood firmly touched that the next update will be written from the comfort of our new home!
Since the last blog we have had fantastic news with the house all but ready, a discharge firmly set for the 28th November and Jovies gastrostomy operation FINALLY completed. We've had visits from great grandparents, presents galore and a load of work on our hands to get both the house ready, and our homecoming charity auction.
Now the light at the end of the tunnel is upon us the last six and a half months seem like a distant nightmare, and while the true reflection will probably come once we are home we are finally truly looking forward to getting home.
The seriousness and sadness of this place was driven home this week as we lent our pushchair to a family we've spoken to a couple of times, whose poor little boy, like jovie has spent his life in hospital, difference being they aren't expected to get home. Horrible, and lending them our pushchair for the chance to take their little boy outside was not only the least we could do, but a reminder of just how much worse things could have been for us.
Issues with the care at the hospital, and various other annoyances persist, yet with the 28th growing nearer and nearer all focus is turning to life after Birmingham! Thank fuck!!
Jovie continues to thrive and shine through it all. She is now 14lbs 14 and is nearly as tall as her mum! She has found her feet now and continues to play with anything she can get her hands on. She continues to enjoy her milk and is now eating a large amount of solids each day. With more room around her stoma we even managed to hear her cry the other day, an amazing feeling!
A huge couple of weeks await us, the huge challenge of putting the months of training and practice into operation and looking after jovie at home ourselves awaits, we hope we are up to it.
Home for Christmas! And a huge party to celebrate on December 4th at the Marwood in Worcester. Auction items still needed and much appreciated. A full list of items to follow to allow people not attending to bid, with all proceeds going to Ronald McDonald House Charity who have been fantastic to us throughout our time in Birmingham.
Fingers and toes crossed and wood firmly touched that the next update will be written from the comfort of our new home!
Sunday, 9 October 2011
Its good to talk...
There's an irony when someone who hasn't updated their blog for a while starts with a moan about communication. Unfortunately for us tho, that seems to be the constant topic for conversation in this bloody place. It has been pretty crap from the complex care team and nurses right from the first days on the ward. It got even worse when our eventual home care team, orchard care, started coming up to the hospital to complete their training with jovie. Then since the bristol weekend, things have gone from bad to even bloody worse.
Having been told we could take jovie anywhere as we are fully trained, we headed down to grandads for a visit, while there our training was put to the test with our first home emergency, which as horrible and frightening as it was, was dealt with exactly as we had been shown. We eventually get back to brum to be told that Jovies doctors weren't told about our trip and its caused them a mountain of paper work (tough shit). Turns out us telling the morning nurse, who didn't pass it on, the afternoon nurse, who didn't pass it on and then the night nurse, who also didn't pass it on, wasn't quite enough. The exact same chain of incompetence happened just yesterday when having left specific instructions for Jovies Physio to be done (should be every morning) we arrive in the late afternoon to be told they've left it for us, as no message was passed.
The fact the nonsense in bristol was made all the worse by the fact we were given the wrong equipment (a tube for her oxygen which didn't fit her oxygen) just further compounds are annoyance with this place.
Alas tho, we are stuck here, at least for now. The house is still at least 6 weeks away from being ready. So that's at least 6 weeks of not being told if jovie needs her feeding tube inserted into her t
stomach, something she's supposedly been on the waiting list for for months now. 6 weeks of people asking us about meetings we haven't even been told about and having to explain the same thing over and over and over again.
We took jovie back to the accom. today as we often do on weekends, and watched groundhog day with her. Sometimes it feels like we are living it.
On the far less negative front, jovie is doing well with her sitting up, holding her head up, holding and bringing things up to her face. She is also now enjoying time on her belly and spends more time laughing than one of the jokers laughing gas victims! Her most recent weight came in at a whopping 13lbs 7oz, while her baby hair has almost all fallen out.
Thankfully the emergency in bristol has been the only incident we've had to deal with on our little trips away from the hospital. Five months we've been on this road now. Tired, worn out and massively fed up, but couldn't be prouder or more excited about getting our family home, at last.
Having been told we could take jovie anywhere as we are fully trained, we headed down to grandads for a visit, while there our training was put to the test with our first home emergency, which as horrible and frightening as it was, was dealt with exactly as we had been shown. We eventually get back to brum to be told that Jovies doctors weren't told about our trip and its caused them a mountain of paper work (tough shit). Turns out us telling the morning nurse, who didn't pass it on, the afternoon nurse, who didn't pass it on and then the night nurse, who also didn't pass it on, wasn't quite enough. The exact same chain of incompetence happened just yesterday when having left specific instructions for Jovies Physio to be done (should be every morning) we arrive in the late afternoon to be told they've left it for us, as no message was passed.
The fact the nonsense in bristol was made all the worse by the fact we were given the wrong equipment (a tube for her oxygen which didn't fit her oxygen) just further compounds are annoyance with this place.
Alas tho, we are stuck here, at least for now. The house is still at least 6 weeks away from being ready. So that's at least 6 weeks of not being told if jovie needs her feeding tube inserted into her t
stomach, something she's supposedly been on the waiting list for for months now. 6 weeks of people asking us about meetings we haven't even been told about and having to explain the same thing over and over and over again.
We took jovie back to the accom. today as we often do on weekends, and watched groundhog day with her. Sometimes it feels like we are living it.
On the far less negative front, jovie is doing well with her sitting up, holding her head up, holding and bringing things up to her face. She is also now enjoying time on her belly and spends more time laughing than one of the jokers laughing gas victims! Her most recent weight came in at a whopping 13lbs 7oz, while her baby hair has almost all fallen out.
Thankfully the emergency in bristol has been the only incident we've had to deal with on our little trips away from the hospital. Five months we've been on this road now. Tired, worn out and massively fed up, but couldn't be prouder or more excited about getting our family home, at last.
Friday, 23 September 2011
Wherever I lay my hat...
Apologies to all for the lack of an update this month, it’s been rather a crazy few weeks.
This week alone began with a serious case of food poisoning (me), and has involved the first friend or family member to be signed off competent looking after Jovie (Kelly), the first time ever eating solids (Lorna... OK Jovie, not Lorna), and biggest and best of all WE HAVE A HOUSE!!
Not a misprint friends, our wait is finally over and all the criticism of Worcester County Council can be revoked! In 6-8 weeks when the house has had a good spruce up including a brand new kitchen (after the copper was pinched out the old one!) and a new door (after the bailiffs destroyed the old one!!) we will be moving into our first family house together. Jovie will be getting out of hospital, and we will be getting our lives back!!
...and not a moment too bloody soon either. Without the house news this update would have been taking a decidedly more sombre tone, as our frustrations with the nursing staff and the day to day life we have been forced to live have reached boiling point. The various annoyances and constant poor communication we have had to deal with could fill a book, with recent weeks (and I put it down to Jovie’s improvement and our clear desire to get her the Hell out of hospital) have been particularly taxing. Events which taken in isolation really don’t sound like much, but five months down the line I am grateful for not owning a rifle and for not knowing where the nearest clock tower is.
Enough of that though. On more positive news I broke down in floods of tears on the way to work today!! Completely out of the blue and completely un-triggered I drove the familiar M5 stretch this morning bawling my eyes out! Luckily it turned to laughter before I was completely out of control but where it came from is anyone’s guess. Without getting too sappy I should just point out I can’t even explain how proud I am of Lorna & Jovie, and my fingers are so tightly crossed that everything works out with the house right now it’s tricky even typingggg.
As I’m doing this from an actual computer it gives me a rare choice to post an up to date photo for those of you not on facebook and seeing Jovie every day by the power of social network news feeds!
Other than GOING HOME!!! not much else on the horizon of note, lots of trips out now we are cleared to take Jovie out in the car as far afield as we like without a nurse, lots of tasting with solids and lots of planning what we are going to decorate Jovie’s room with! A little further down the road our charity auction is a step closer what with HAVING A HOUSE!! with items on offer including signed football shirts, a holiday in France & spa vouchers. Keep your eyes and ears peeled for more details!!
This week alone began with a serious case of food poisoning (me), and has involved the first friend or family member to be signed off competent looking after Jovie (Kelly), the first time ever eating solids (Lorna... OK Jovie, not Lorna), and biggest and best of all WE HAVE A HOUSE!!
Not a misprint friends, our wait is finally over and all the criticism of Worcester County Council can be revoked! In 6-8 weeks when the house has had a good spruce up including a brand new kitchen (after the copper was pinched out the old one!) and a new door (after the bailiffs destroyed the old one!!) we will be moving into our first family house together. Jovie will be getting out of hospital, and we will be getting our lives back!!
...and not a moment too bloody soon either. Without the house news this update would have been taking a decidedly more sombre tone, as our frustrations with the nursing staff and the day to day life we have been forced to live have reached boiling point. The various annoyances and constant poor communication we have had to deal with could fill a book, with recent weeks (and I put it down to Jovie’s improvement and our clear desire to get her the Hell out of hospital) have been particularly taxing. Events which taken in isolation really don’t sound like much, but five months down the line I am grateful for not owning a rifle and for not knowing where the nearest clock tower is.
Enough of that though. On more positive news I broke down in floods of tears on the way to work today!! Completely out of the blue and completely un-triggered I drove the familiar M5 stretch this morning bawling my eyes out! Luckily it turned to laughter before I was completely out of control but where it came from is anyone’s guess. Without getting too sappy I should just point out I can’t even explain how proud I am of Lorna & Jovie, and my fingers are so tightly crossed that everything works out with the house right now it’s tricky even typingggg.
As I’m doing this from an actual computer it gives me a rare choice to post an up to date photo for those of you not on facebook and seeing Jovie every day by the power of social network news feeds!
Other than GOING HOME!!! not much else on the horizon of note, lots of trips out now we are cleared to take Jovie out in the car as far afield as we like without a nurse, lots of tasting with solids and lots of planning what we are going to decorate Jovie’s room with! A little further down the road our charity auction is a step closer what with HAVING A HOUSE!! with items on offer including signed football shirts, a holiday in France & spa vouchers. Keep your eyes and ears peeled for more details!!
Wednesday, 7 September 2011
Dicky tums and missing mums
Well, we are still here.
Another week rolls into another week with very little to report since the last blog in terms of major news. The housing situation remains slow and frustrating, with just one house advertised on the web site we must check on each week, we've bid for it and all so fingers crossed, but optimism is hardly sky high in the Wyse camp right now.
Perhaps mainly due to jovie having to endure a tricky couple of days having picked up a cold or bug of some kind, which knocked her well and truly for six on Monday this week. Lots of sleep and (eventually) some anti biotics which despite giving her the usual upset stomach seem to have put paid to that but the whole situation has done little more than increase our growing hatred and frustration with this place and more than one or two of the professionals we unfortunately are currently relying on.
Unfortunately frustration seems to largely be the name of the game at the moment. Now jovie is clearly going to get out, it seems even harder to cope with everything than when we feared she wouldn't. I guess we just want to be left alone with her, at home where she belongs. Soon, we keep telling ourselves...
Prior to this week we had been full steam ahead with taking jovie out and about, back to the accommodation and generally anywhere other than the hospital, thriving on feeling normal, albeit for just a few hours at a time. With Lorn off for a couple of nights for the big gay wedding in gran canaria I was more than slightly looking forward to spending some time just me and jovie during the day this week. So much for that. But alas there may well be plenty of time for that in the hopefully not too distant future...
I'm in danger of starting to sound like a right miserable git here so some good news to even it out; since the first trip back to Worcester jovie has met even more of her family, with great gran making a second visit and great auntie making her first. The doctors have finally stopped messing about with Jovies feed and have committed to starting her on solids very soon. The preparations for the charity auction are under way, with a holiday, rugby and cricket tickets along with football shirts just a snippet of what will be going under the hammer to raise some dollar for the Ronald McDonald House. Speaking of money, we have also opened up a bank account for jovie so one day when she is older she can get loads of charges, get terrible service and pay to make some city fat cats rich just like the rest of us! She just needs to get a job now and we will sorted...
Will update again soon, hopefully in a better mood and with more news of houses and getting out of here...please!
Another week rolls into another week with very little to report since the last blog in terms of major news. The housing situation remains slow and frustrating, with just one house advertised on the web site we must check on each week, we've bid for it and all so fingers crossed, but optimism is hardly sky high in the Wyse camp right now.
Perhaps mainly due to jovie having to endure a tricky couple of days having picked up a cold or bug of some kind, which knocked her well and truly for six on Monday this week. Lots of sleep and (eventually) some anti biotics which despite giving her the usual upset stomach seem to have put paid to that but the whole situation has done little more than increase our growing hatred and frustration with this place and more than one or two of the professionals we unfortunately are currently relying on.
Unfortunately frustration seems to largely be the name of the game at the moment. Now jovie is clearly going to get out, it seems even harder to cope with everything than when we feared she wouldn't. I guess we just want to be left alone with her, at home where she belongs. Soon, we keep telling ourselves...
Prior to this week we had been full steam ahead with taking jovie out and about, back to the accommodation and generally anywhere other than the hospital, thriving on feeling normal, albeit for just a few hours at a time. With Lorn off for a couple of nights for the big gay wedding in gran canaria I was more than slightly looking forward to spending some time just me and jovie during the day this week. So much for that. But alas there may well be plenty of time for that in the hopefully not too distant future...
I'm in danger of starting to sound like a right miserable git here so some good news to even it out; since the first trip back to Worcester jovie has met even more of her family, with great gran making a second visit and great auntie making her first. The doctors have finally stopped messing about with Jovies feed and have committed to starting her on solids very soon. The preparations for the charity auction are under way, with a holiday, rugby and cricket tickets along with football shirts just a snippet of what will be going under the hammer to raise some dollar for the Ronald McDonald House. Speaking of money, we have also opened up a bank account for jovie so one day when she is older she can get loads of charges, get terrible service and pay to make some city fat cats rich just like the rest of us! She just needs to get a job now and we will sorted...
Will update again soon, hopefully in a better mood and with more news of houses and getting out of here...please!
Saturday, 27 August 2011
Milestones
Big week drawing to a close. Jovie has moved on to gravity feeds (no more pump, so just like normal feeding but in her nose still) and has also started to take milk from a little syringe. Her weight is up to 11'11 and she is getting on with her new, longer more flexible custom made trachey brilliantly.
All this great stuff pales in significance to the big events this week. Monday saw both me and Lorn fully signed off to look after jovie on our own. Now all we need is a house and after crossing a few i's and dotting a few t's we will finally be out of here.
The second thing was Jovies first ever trip back to Worcester, not only the furthest she's been from hospital but also the first time she has been "home". Lots of family and friends were there to see her of course and it was truly amazing to have her back albeit just for the day. It does however compound the frustration of being here even more.
With being signed off we are now free to take her out whenever we like without a nurse and have made the most of this with a lazy day today lounging out back at old mcdonalds all day. Great fun.
Tomorrow sees another first for us as for the first time since jovie was born, (16 weeks ago!) me and Lorn are going to be spending the night away from her, as we stop in cheltenham for szabos wedding, a dual celebration as its our two year wedding anniversary too. Babysitter in place we will miss her like mad but do our best to enjoy ourselves, with the help of a drink or two I imagine...
The end of all this is slowly feeling within reach. We can now bid on houses back in Worcester so *hopefully* we will be reporting on news of a new house and an escape from all this very soon.
All this great stuff pales in significance to the big events this week. Monday saw both me and Lorn fully signed off to look after jovie on our own. Now all we need is a house and after crossing a few i's and dotting a few t's we will finally be out of here.
The second thing was Jovies first ever trip back to Worcester, not only the furthest she's been from hospital but also the first time she has been "home". Lots of family and friends were there to see her of course and it was truly amazing to have her back albeit just for the day. It does however compound the frustration of being here even more.
With being signed off we are now free to take her out whenever we like without a nurse and have made the most of this with a lazy day today lounging out back at old mcdonalds all day. Great fun.
Tomorrow sees another first for us as for the first time since jovie was born, (16 weeks ago!) me and Lorn are going to be spending the night away from her, as we stop in cheltenham for szabos wedding, a dual celebration as its our two year wedding anniversary too. Babysitter in place we will miss her like mad but do our best to enjoy ourselves, with the help of a drink or two I imagine...
The end of all this is slowly feeling within reach. We can now bid on houses back in Worcester so *hopefully* we will be reporting on news of a new house and an escape from all this very soon.
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