Teenage Kicks

A simple message to you Jovie, for when the time comes that you get to read this blog (assuming you’ll even want to as you’re far too cool for that sort of thing).

We’ve had some incredible ups & some life changing downs in the 3 years since I last posted. Much of that is for another time & place but for now I just want to say this;

Happy Birthday our teenage daughter. 13 today - 4th May 2024.

I will never be able to convey to you the absolute joy it gives me to be able to say that. The days I feared you wouldn’t make 13 days or weeks let alone years thankfully feel a lifetime away yet still so fresh in the memory.

You have become the most inspirational, brave and resilient young lady we could have ever hoped for and I want you to know that we could not be prouder of you.

Happy birthday our miracle daughter, to my hero.

Love always x

Dear Jovie...

 Dear Jovie,

You’re not quite ready to be shown these old blogs yet - too much colourful language 😆 & as such you won’t get the chance to read this just yet. It’s been a long time since I last wrote one - a positive sign in many ways that things have been ok I suppose what with many being born out of heartache. With that in mind, whenever you are reading this I wish you a very happy, belated, 10th Birthday!

10.

10 years old. It’s actually incredible to think an entire decade has passed since I sat and cried my heart out watching you struggle to breathe for yourself in that tiny little incubator in Worcester hospital. A week later and our 6 month journey at Birmingham Children’s Hospital was underway. At any point during that frightening, inspiring, horrendous & incredible time you’d have told us I’d be sat 10 years later wishing you the happiest of birthdays we’d have been extremely happy to hear it.

On an annual trip back to BCH just this week you asked me about our time there and how it felt going through some of those most horrendous moments. I couldn’t even bring myself to tell you it was the most frightening time of our entire lives. On more than one occasion I thought we’d never get out of there.

But that was then. In a couple of hours time you’re going to be 10 years old! I still can’t believe it. You’ve been through more in a decade than most will experience in a lifetime and I cannot begin to explain how proud of you I am. You’re my absolute hero & you’ve changed my life for the better in every way. I wanted to recount some memories of the last 10 years but there are just so many it’s hard to even know where to start!

So I’ll keep it simple and say; happy birthday my amazing miracle. My best friend and my greatest achievement. Your mum and I both love you with all our hearts & have loved this decade of making memories with you. Thank for your bravery, your sense of humour & your courage.

Roll on the next 10 🥰 🐺 

Iiiiit's OUT!

On Thursday 9th April 2015 at approximately 11am, 1385 days after Jovie had, what was effectively a life saving operation to 'fit' a tracheostomy;

IT

IS

OUT!

Jovie did the honours herself and has been showing off her new un-taped up neck complete with jazzy plaster to anyone who will look all day! Loads of family around today to make her feel extra special and we can't even get our heads around how happy/scared/excited we are right now.

Not 100,000,000% cracked the mask just yet - she's still a bit spooked by it when it pops off or comes loose - but near as dammit. This little girl never ceases to amaze/impress us. Can only imagine what it feels like for her, but it's already a pleasure carrying around less medical equipment (I'm a daddy not a doctor!) and watching her eat and play without worrying sick about that tube.

Lots of work still to do including a full sleep study tonight, chance of getting home tomorrow which would be ace. a real landmark day for my little Wolfpac ✌️

Tracheostomy

Jovie wakes up and we have to empty any water that has collected in her ventilator tubing, this happens often and is pretty dangerous as left alone the water could easily go back into Jovies trachey tube when she sits up and straight into her lungs causing all manner of problems.

Suction.

Jovie has to sit up while we attach a saline nebuliser to her Trachey via her ventilator. After this runs through we give her chest physio.

Suction.

After the saline nebuliser its a colomisin one, an antibiotic type medicine administered in the same way that helps fight off trachey infections, something we've had dozens of over the years.

Suction.

After vent turned off and tidied up, we deflate the cuff within the trachey with a syringe. Water is used to inflate it in order to close off the leak around the tube as Jovie has steadily outgrown it over the years. While inflated she can barely make a sound. After this, a cap - either a sealed off red one or a clear speaking valve that still allows some air to pass through - is attached to the end of jovies trachey. Often she will take this off while eating as it "feels funny" during this time with her airway exposed its more of a risk than normal so we stay on our toes even more. Eating will generally cause coughing and increased secretions.

Suction.

Morning routine done, every day Jovie has to have her tapes changed. So while holding the tube in her neck so it doesn't fall out, we wash, dry and cream her neck - it's often sore due to the velcro rubbing or because she's been sweating - new tapes are applied with padding to try and protect the hole and skin around it. All this usually causes coughing.

Suction.

That's every single day. Once a week the tube is actually removed and replaced with a clean one. The whole process usually lasts ten to fifteen minutes.

At bedtime, the entire morning routine is essentially repeated. Every single day. 

The spare tubes and variety of cleaning products and pieces of kit are kept in a room which is basically a store room also full of other trachey related equipment from spare tubing to boxes of water for the humidifier, hundreds of suction catheters and lots of circuits. (Thank fuck for the free nhs). Every week we order new stock to be delivered or collected. Almost every week the wrong stuff is brought or things are missing. Not a big deal, we're used to it and see the funny side after 3years & 7months (approx 146 weeks/deliveries).

During the day, purely trachey related, everywhere Jovie goes her suction machine - size of a large toolbox and as heavy as one - goes with her. Along with a lunch bag sized emergency bag with spare tubes, tapes etc in.

As a result of the tube, eating is dangerous and nerve racking at times. All food is scrutinised for size, shape and ease of swallowing. Jovie can't swim, doesn't get to bath properly and needs to be super careful when drinking. Other kids often ask about it. Parents just tend to stare.

Since June 2011 when the trachey was 'fitted' it's nearly killed Jovie once (after it was the wrong size to begin with), it's caused emergencies at home, at Acorns, in bed and while eating. It delayed her speech. It's been made bigger, fitted with the inflatable cuff and has caused countless infections due to the fact it's an open route to her lungs and essentially a foreign object the body is continually fighting off. It's restricted the ability to go places without transport, robbed us of a room in the house, cost the nhs probably £1000s and been a bloody nuisance on almost a daily basis.

It also saved Jovies life. It was introduced at a time when other avenues had failed and nothing else would work. It's allowed us to live a (relatively) normal life. Has given us the freedom to stay out when Jovie has fallen asleep or go on long car journeys. It's also helped us come to terms and manage jovies condition and has even helped fight colds and bugs in allowing us to get all that sort of crap out of Jovie easily via the suction machine.

It has been a curious addition to our lives. One we must be hugely thankful for while at the same time are utterly, and completely fed up with.

It's time is, thankfully up. Through natural development, hard work, luck (I guess) and Jovies own incredible will we are now at the point where we are set for the biggest change since the trachey was first introduced.

While Jovies condition remains the same, we now move on to the next chapter. Ventilation via a face mask. A huge change in so many ways. For Jovie, certainly while awake it's relative 'normality'. No tube. No suction. No inflated cuff that stops her from talking. No carer while she goes to school. No (or at least a lot less) specialist training needed to be left alone with friends and family.

For us, less equipment. A routine with our daughter that can include proper baths, falling asleep on the sofa, swimming, eating like a pig without fear of blocking a stupid fuckin pipe and so much more. Probably incredibly trivial stuff, but stuff I actually cry about the thought of being able to do. An actual proper, bubbles over the edge, dunking her under and tipping water on her head bath!! Surfing! Paddling pools! It's all going to be possible.

Yes, the face masks will come with their own baggage and problems no doubt. I'm petrified about how reliable the ventilation will be now it won't be via a direct route to her lungs. I've known nothing else almost her whole life so in many ways have no idea how things will be without the trachey. There will still be stock orders and with them the delivery of the wrong stuff I'm sure! Colds and bugs for Jovie may even be harder to cope with in many ways as the mask will probably be more awkward to mange while she's awake than the trachey. It's a massive change for us, but one that Jovie needs and bloody deserves.

So it's off to BCH again to get the ball rolling. A couple of nights ventilated via a mask with the trachey still in place but blocked off. All being well the tube will then simply be taken out, the hole simply plastered over and left to heal on its own which can take a month or more apparently. Then it will be no more tracheostomy.

One day we will tell her all about her time living with the trachey. There's a memory box with some stories to tell we will show her. Having known nothing else really it's actually mad to think that stories and photos will be all we have to show for it. Hoping it's the right choice and things go as smoothly as possible. Scared. Excited. Ready for a big change. #RollOn

First ever night with the trachey to...

...possibly the last! ❤️ this 🐒

365 days later...

The birth of your first born is widely regarded as being the day that is supposed to be the best day of your life. I have no reservations in admitting this wasn't the case for me.

I wouldn't wish what we went through with Jovie, from that first day in the Worcester NICU to the miserable November afternoon in Birmingham when we finally had the news we wanted, on my worst enemy.

When jovie was born I sat across from her incubator wandering if I'd ever get to hold her. Lorna Marie Wyse didn't even get to see our little girl.

Tomorrow however, marks 1 whole year; 365 amazing life altering days since we got our little miracle home. Like the queen, jovie will always have 2 birthdays. So happy birthday for tomorrow to the greatest, bravest, most amazing little girl I have ever been blessed to have as part of my life. I love you baby. Can't wait to see you smiling again tomorrow x

Jovie Wyse: The Movie

Jovie's Big Day I

Away from current grumbles about how yesterday went so tits up, a little message just to say a HUGE thank you to everyone who sent well wishes, cards and presents for Jovie's birthday last week.

The 'three-day' birthday celebrations were hands down three of the best days of our lives and we enjoyed every minute of the celebrations. Jovie had a really great time at her party, and enjoyed watching her uncle simon leap out of a plane on Sunday on behalf of Ronald McDonald House.

It was a birthday we at times only dared to look forward to and it turned out to be better than even we hoped for. Thanks to everyone involved... send your suggestions on how to top it in 2013 on a postcard please!

Jovie's Big Day II

Those of you that know me will know that generally speaking Im a fairly laid back guy. Usually it takes a lot for me to really take exception with something, and id like to think that most of the time i give people the benefit of the doubt.

Id also like to think that this has been the case throughout Jovies life.

While she was in hospital I think it was pretty reasonable and understanding of myself and Lorna NOT to kick up a fuss when she was fed out of date milk. Or make a complaint after Jovie was given a seizure by drugs she was continually given for a condition she didn't even have (and had next to no symptoms of). We were even understanding and forgiving when our concerns were ignored about her initial trachey which then turned out to be the wrong size, nearly killing her in the process.

However, yesterday took the piss one step too far.

Readers of this blog may recall previous references to the often non existent communication at BCH, which in the past has led to regular, if insignificant annoyance. The example of the bag of someone else's toys forever finding its way back into Jovies room, despite numerous pleas for it to be removed being a prime example. More recently the no-showing of carers at night being another.

Yesterday was all set to be the next big step in Jovies development. Two days in hospital planned over a month ago, to among other things, increase her time off the vent and to change the size of her tube. It turned out to be the biggest example of unorganized incompetence i have ever had the misfortune of witnessing in my life.

With the plan to test Jovie off her vent all day we arrived at 9am as requested to be met with surprise on a ward we'd never been on before, and were frankly bemused to be on. After first telling us we were indeed on the wrong ward then to be told in fact we were on the right one, we were informed there were no beds ready yet and we'd have to wait. Fair enough. (At this early stage there is no sign of any of Jovies doctors or staff we were familiar with.)

Hours later and with concern building about a) Jovie being left on dry circuit/off vent (which should only currently be for 6 hours) and b) with when the time of vent test would begin, we are told a bed would be ready soon and told to grab some lunch and come back. Fair enough again i suppose (still not even a sighting of Jovies docs - who, so we were told would all been in to see her).

By 2pm Jovie had been off her wet circuit for 6 hours and still we had no room and no clear indication of what was going on. Two hours later and after more questions from us we are told a room is ready and docs are on their way to see us. By 430 we are first discussing going home, with Jovie now pushing 3hrs off her wet circuit than we'd normally allow (or that this hospital had instructed).

Finally at nearly 5pm we get a room. So the day is wasted and Jovies docs are still nowhere to be seen but at least we have her in a room and can sort her stuff for the following day. At this point the true disorganisation of our visit is revealed.

Turns out they don't have a wet circuit on the ward (raising the question again as to why we are bloody on it) and then they announce there is nobody on staff to watch Jovie. The nurse in charge is even surprised when we explain she requires constant supervision, as if her entire condition is a mystery to them. Unbelievable.

To truly appreciate the severity of the final straw, its worth remembering that when Jovie first had her trachey it was a 4.0 size. We were assured numerous times it was working and a perfect fit, yet it seemed wrong to us and Jovie wasn't herself. It turned out it was not only not ventilating properly but actually choking her, to the point it very nearly killed her and only the presence of an amazing doctor on intensive care saved her life. Jovies current tube is a 4.5. So naturally we were very concerned about the prospect of going down a size, but knowing we need to in order to hear her speak we agreed to it under the proviso that it was done safely and with precautions to ensure everything went smoothly. (To the extreme we called a few weeks before to reiterate this and to check they had the right tubes, which they didn't!!)

So when it was suggested a doctor was going to drop in at 6pm in the evening, onto a ward with no one-to-one care, none of Jovies equipment and no sign of anyone familiar with Jovies condition and history to change her tube, to say enough was enough is a massive understatement.

At this point, we packed up and left. It was bad enough, but acceptable in a busy hospital, that we didn't get a bed for so long. But to not even have a clear msg from Jovies doctors (who we were initially told would be there, and who through the day we were told were then weren't even in the hospital), and to be on a ward without the adequate equipment or staff to look after Jovie was just utterly ridiculous.

After sleeping on it and writing out in detail what happened, we don't just feel annoyed about the whole fuck up, but worried too. We have to rely on BCH in emergencies. We need these developments to help move Jovies progression on. This raises way more questions than i care to face right now to be honest. A seriously low point in this whole experience for all of us.

52 weeks, 365 days, 8760 hours, 525,600 minutes, 31,526,000 seconds...

In four days time Jovie Caroline Wyse will have been with us for one year.

365 days since Lorna went into a Jeremy Kyle induced early labour and was rushed in to Worcestershire Royal Hospital. An emergency C section later and we had a beautiful little girl. I always knew this moment would change my life of course. Having a child even in the best of circumstances is life altering, having a little girl they say makes you into a real man. I never would have imagined in my life wildest nightmares or thoughts however the agony we would go through before we finally got to take that special little girl home. Yet while that particular chapter of our lives is behind us, with Jovies very special first birthday on the horizon, it seemed only right that i should update on how things have been going.

From a medical point of view, very little has changed in reality. Jovie remains fully ventilated through her trachey for the majority of the time, spending no more than three hours in one go a day off her vent. She is still fed milk through the gastro tube in her belly. We have still never really heard her cry, laugh or speak. But what we have got is an amazing, developing, wonderful, smart as a button daughter. One who has given life more meaning than i ever thought it could have. Yes i still obsess over football and my golf handicap. Yes Lorna still spends most my money on clothes and her nails. But life is so irreversibly different now, that Jovie has become our life and soul.

Perhaps her condition and what we have already been through together strengthens this feeling, perhaps its just what being a parent is all about. Whatever it is, as Jovie celebrates 6 months at home and approaches a momentous birthday at times we feared would never come, i can't help but feel humbled, honoured and excited.

Following the birthday celebrations of the decade Jovie is back to brum children's for various tests and challenges to see if we can extend her time off the vent, and hopefully fit a speaking valve to her trachey. Exciting times, but nervous ones too. Life at home is almost too good to want to interrupt it with another stay, albeit a short one, back in hospital. Its a place i quietly hoped we'd never return to, but always knew we had to.

On the development side of things, its always tempting to compare kids of similar ages. I often hear others doing this. Perhaps Im lucky in that my previous experience of babies consists of watching Wallace and Gromit over and over while being a paid to babysit. As far as Im concerned Jovie is coming along great. Sitting up perfectly, rolling over, getting on her knees, clapping and smiling on cue and throwing the most adorable strops when she sees something she wants (gets that from her mother i suppose). She's not quite standing but is showing early signs of good strength in her legs. Crawling is tricky due to the tube, so its more of a back shuffle at the moment. She has two monster teeth in the bottom at the front of her mouth, kind of like a hippo! She recognises and points to mummy and daddy, kisses and claps when asked and is generally still as happy as ever.

From a personal perspective. I hope Im doing a good job as a dad, Im certainly enjoying it, more than i ever thought i would. Lorn is doing amazing too, Im really very proud of them both. Due to the way things are in many ways we have a huge amount to deal with ourselves at times and Lorn has been fantastic for Jovie and for me.

Our fundraising goal of 5k for Ronald McDonald has been achieved, huge thanks to those involved. Particularly the huge contribution from Nigel Wilson and everyone at my previous work. More updates on that to follow soon...

In just four days time it will be Jovies birthday. It is impossible for me to convey in words how amazing this is for us. Despite the time in hospital, despite the horrible dark days we went through its been the best year of my whole life.

As for the big day itself, some quality time with my girls is on the agenda. Saturday we are holding an all day open house party, food, drink and questionable banter in good supply. Please feel free to drop by anytime from 12 to wish the little pie happy birthday. Alternatively/as well we will be sinking a few in Jovies honour a the Marwood from 930ish Saturday night so come along and join us there.      

2012

Almost a  month to the day since the last blog, re-reading myself brings a smile to my face, not as it reminds me how happy I was to get Jovie home, but because it shows me that happiness hasn't died down a jot! Touching as much wood and crossing as many fingers as possible, as far as the little lady is concerned it's been an absolute dream start to life at home for her. Jovie's charity auction for RMHC was a huge success (more on that in a bit) Christmas was a blast, New Year was good fun (even if Jovie finally dozed off just as the fireworks started at about 11:15pm!) and the day to day life of living with, and caring for our little girl has been more fun and more rewarding than I ever imagined it could be.

The house is beginning to take shape, and by that I mean most of our junk has found it's way out of bags and onto floors! Jovie's huge stash of Christmas goodies have accounted for quite a bit of that too. We seem to be in a decent enough routine in terms of looking after Jovie, with both of us managing to spend some time together and alone, with the help of great friends and family it has to be said.

Jovie passed the 8 month point just a week ago, and is developing well for a baby of her age, obviously she's a wee bit behind after spending so long stuck in bed in intensive care but we are really pleased with her progress - she is starting to sit up on her own for very brief spells, she seems keen to try and crawl/shuffle when on her front, and her eating is fantastic, with her night milk feeds gone completely and a healthy mixture of milk (still through her gastrostomy) and solids (orally) during the day. Her amazing little personality is really shining through, I can honestly say I'm yet to see her without a smile on her face first thing in the morning - a stark contrast to her mother then!

No major hiccups or grumbles with her care package, the night nurses arrive at nine and leave at seven, sitting and watching our baby sleep to keep her safe. Our spare room is packed from wall to ceiling with Jovie's supplies, some of which we've had troubles with when it comes to deliveries but all in all things have started well. A few nights recently have tested our powers of sleep endurance with no carers coming at night due to illness or what have you, but we take it turns to sit up and cope with it like any normal family would do. It's the feeling normal part that has probably been the best thing, taking Jovie to town (which she nearly always sleeps through) or to the supermarket (which she loves!) and even getting her down the pub once or twice too! Yes you get the odd gorm looking at her like she's an alien, but I think neither of us suffer fools to gladly so it never interrupts our fun.

On the horizon, my dad is nearly trained to look after Jovie, and will beome the second member of our family/friends to do so. This gives us a bit of support when he's up or we are down visiting, and also the potential for a babysitter once and a while! We are yet to hear when we will be called back to Brum for another sleep study - Jovie continues to thrive during her three hours a day with no ventilator, and we are keen to extend this time but can't before her CO2 levels are monitored in a controlled environment. With Christmas done and dusted it won't be long before my wallet starts to shake in trepidation with May (now to be known as simply 'expensive') just around the corner; Jovie and Lorna's birthday's within 2 days of each other - ouch.

A little update and another big 'thank you' is also due on our fundraising efforts for the Ronald McDonald House Charities. The charity auction we ran late last year, with big contributions from all the auction bidders, Kelly's Raffle and generous donations from too many people to mention in fear of leaving any out, raised a whopping £2,700! This was absolutely fantastic and way more than we had anticipated... so much more in fact it has given us the imputus to hold onto that amount for the moment, in an attempt to increase it to our new target of £5,000. This amount would allow us to purchase a 'room sponsorship' at RMHC Birmingham with Jovie's name displayed on the room we stayed in. We are setting a deadline for this of Jovie's first birthday - May 4th 2012 - with a couple of things in our thoughts as ways to raise the extra £2,300 we need, including a skydive by the brothers Wyse!! So if anyone out there can think of anything they would like to do to help us reach our target, or if there are anymore generous donations hiding out there, please let me know by responding to this post, text or call me on 07825788729, facebook or tweet me (@sunners14).

On the actual laptop again this time so another chance to post some up-to-date snaps of our little star for those of you not already sick of me splashing them all over facebook! Cheers all, and happy 2012 to you from the three of us.

It's beginning to look a lot like Christmas

Well, the moment we waited so long for finally came last Monday, as we were finally discharged from Birmingham Children's Hospital. Despite a number of minor and one or two pretty major annoyances a massive thank you goes out to everyone at BCH who helped look after Jovie, and us while we were there. We know that with Jovie's condition, when she inevitably picks up bugs and colds we will find our way back there, however in the nicest possible way, I hope its a loooong time before we need to see the inside of that hospital again!

Being home has been amazing this first two weeks. The house is coming along, although still needs a lot of work and bits and pieces doing, but it's home. Jovie seems happier and more relaxed, and I think we are too. Problems have been near non-existent, with Jovie pulling her feeding tube out of her stomach the only moment of minor emergency. All was sorted easily enough and she now has a 'button' rather than a full tube attached from her stomach, which is one less tube to worry about anyway!

Lot's of visitors have been in to see her, both family & friends and doctors, care workers & the like. While I have started my three days working from home with decent success this week, we've both had the fun of getting used to early mornings and the day to day stuff of looking after any kind of baby, let alone one as special as Jovie. Lot's of press coverage came our way this last week as well, with our ugly mugs along with some cracking snaps of Jovie going in the Sun, Metro, Star, Mail online and a host of foreign websites from Fox News to Vietnamese health pages! I also had a chance to promote the charity do on BBC Hereford & Worcester which was great.

Most refreshing of all since being home is our worries have well and truly shifted from getting Jovie home, to normal things like getting the house sorted, and the small matter of Christmas - Jovie's first and the first I have properly looked forward to since 1994... literally can't wait to wake her up most mornings, but something tells me December 25th might be particuarly nice!

I will keep the updates on Jovie's progress going, lot's still to find about her and loads of hurdles to take on. A massive thank you to everyone who helped us get her home, and to all who have kept up our progress, the comments we have had have been humbling.

One particuarly big thank you must also go to the Ronald McDonald House in Birmingaham, where we stayed throughout Jovie's stay in hospital. Our fundraising event for them last Sunday was superb, with lot's of money raised for a great cause. Thanks again to everyone who came and especially to those who bid and bought raffle tickets. Cheers all.

As I don't do these on a computer much (I usually use my phone) here are some snaps of the little lady for those not on facebook...

The end of the beginning...

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...

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!

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!

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.

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!!

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!

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.

Charity Auction Donation Request

Jovie Wyse was born on Wednesday 4^th May with a rare condition called Congenital Central Hypoventilation Syndrome, or “Ondine Curse” as it is often called. The condition affects the central nervous system, essentially stopping Jovie from breathing when she sleeps. It is an extremely rare and very dangerous disease, especially in newborn babies and as a result of this Jovie had to undergo a tracheotomy and requires 24 hour ventilation.

After spending her first two weeks in Worcestershire Royal Hospital, Jovie was moved to Birmingham Children’s Hospital. With Jovie’s dad working two jobs in Worcester and her mum unable to drive this presented an almost impossible scenario for the new parents. Thankfully they were informed about the Ronald McDonald House Charity which provides an apartment complex attached to the Children’s hospital Birmingham, open to parents of babies being treated in the hospital. Many of you may have given money in some form to this great charity before, albeit unbeknown to you. Those penny jars on the counter of McDonalds? They, along with masses of charity work from the individual houses bring in the money that builds these apartments and maintains them all year round.

As well as providing 60 bedrooms, the Birmingham House offers families the opportunity to cook together, to eat together and share their experiences of the day.  For families coming to the Children’s Hospital for day care, there is also a purpose built lounge, kitchen and play area on the ground floor for their use throughout the day. The House charges the parents nothing at all and is entirely funded by charity work, fundraising and help from volunteers and other kind donations

Without the generosity of the Ronald McDonald House, which receives no funding support from the NHS of government, Jovie’s mum and dad would have been stranded and forced to either leave Jovie alone in hospital, or spend a fortune living out of hotels. Now four months down the line, it a God send that neither of those things had to happen.

Soon, Jovie will be in a stable enough position to get out of the hospital and come home for the very first time. At which point the Wyse family will be returning to Worcester. As a token of their gratitude to the Ronald McDonald House Charity they are hoping to raise as much money as possible to present to the House when they leave. The key way in which they plan to do this is a Charity Auction, which will take place at the Marwood in Worcester on a date yet to be confirmed. What we require are donations to be auctioned off at this event, with the proceeds going towards the Ronald McDonald House in Birmingham. We hope to raise as much money as possible so welcome items of any price range, size or type. Anything from meal vouchers to brand new cars! Whatever you can afford to donate would be very gratefully received.

In addition to the actual auction event itself, a selection of the items on offer will be published in the Worcester News, (Worcestershire’s leading daily newspaper with over 14,000 readers per day) with the facility for members of the public to text in bids for their own chance to win the items (and to ensure we get as much money as possible for them!). Your business card will also be on display at the Marwood during the auction.

If there is anything at all you could donate to be auctioned, please contact me in one of the following ways;

Tweet;
@sunners14

Post;11 Peterborough Close,
Ronkswood,
Worcester
WR5 1PW

Email;christiano_wyse@hotmail.co.uk / pink_princess1216@hotmail.co.uk / ladyjuicy@hotmail.co.uk

Phone;

Chris on 07825 788729 / Kelly on 075981 83595 / Lorna on 078918 68705

Anything you can donate would really help us a lot and hopefully raise loads of money to help this brilliant charity that help so many families in such difficult times. There are a lot of great causes out there, yet this is one that really doesn’t get the coverage it deserves. For more information on Jovie’s condition, please visit www.cchsnetwork.org or the Ronald McDonald House Charity, here http://www.rmhc.org.uk/

To follow Jovie’s individual progress take a look at her blog! www.joviewyse.blogspot.com

Thank you from Jovie, and all the Wyse family and friends.

Day 119 in the hospital...

As if spending the last four months in Worcester and now Birmingham hospital hadn't been bad enough, my evenings have just got all the harder to bare with the return of that bloody show. Well, at least Lorna is happy...

Having said that, for all intensive purposes it isn't all that bad here. Sitting and playing with jovie, all be it in a cramped space sandwiched in with the worlds loudest family, could never be described as being that bad.

A minor let down of a week draws to a close having not got the chance to take jovie back to Worcester as had been promised. Wednesday is now the day for our first trip home, apparently. As with much in this bloody place ill believe it when I see it. Tomorrow sees the final box ticked in our training; life support and the emergency drills. Not something we ever want to have to use but the final piece of the jigsaw. Once completed we can take jovie out around the hospital and grounds as much as we like without a nurse, and then once all sorted on the housing front, we. can. go. home!

The light at the end of that tunnel we have heard so much about really does feel like it could be just around the corner.

In many ways, its the knowing we may be going home soon that is making things tricky. Now we know we are going its becoming more and more difficult to put up with being here. Even being asked if we are ok by nurses has become a constant minor annoyance. This whole situation has stretched us to breaking point and we have really just had enough of this place and everyone in here.

A bit like how I feel after two minutes of watching big brother...