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!
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