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.
Sunday, 9 October 2011
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.
Tuesday, 23 August 2011
Charity Auction Donation Request
Jovie Wyse was born on Wednesday 4th 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
@sunners14
Post;11 Peterborough Close,
Ronkswood,
Worcester
WR5 1PW
Ronkswood,
Worcester
WR5 1PW
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.
Sunday, 21 August 2011
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...
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...
Sunday, 14 August 2011
I predict a riot
All fun and games up in Birmingham this week as we are forced to spend two nights locked in the hospital after the riots hit Birmingham. On one of the nights news swept across Facebook and Twitter that the hospital was under attack, one even claimed it was on fire! As she so often does, jovie slept through the lot. Too young that she is to be sent out to get us a new tv...
Elsewhere we have had good fun watching England destroy India in the cricket together, while the much welcome return of the premier league highlights just how long we've been here.
Jovie herself continues to shine, her weight is good and she tolerates her ventilation perfectly. She now has two different circuits, one connected to a humidifier the other a dry circuit for her to get out and about on. She continues to enjoy her spells in the pushchair and sitting in her car seat too. Her awareness and interaction is brilliant, not sure where she gets her brains from but she's going to be a smart egg that's for sure.
Much to our absolute delight, all being well tomorrow she will get to experience the car seat for real for the very first time as a day trip to Worcester is planned! Another huge milestone on the road to getting home for good.
A road we are very much nearer an end too. Once we have sorted a home to go back to that is. Our training is nearly all done, and even Kelly has began hers. Once finished, and once we secure a house, all of which should be weeks rather than months away we will be good to go! Amazing and frightening in near equal measure.
Personally things haven't been better, with jovie doing so well I was able to make a flying visit over to gay Paris for the bros wedding. Great fun and amazing to see all the family. Was gutted not to have the two girls with me of course but really hoping everyone will get to meet her soon. Lorn is off on her own jaunty very soon with her own trip abroad for the big gay wedding of the year, giving me some quality time with madame! Its weddings galore over the next month and with progress going as well as it is we are genuinely hopeful jovie may be out in time to enjoy some of them too.
As for her condition, no further developments or indication about how she may tolerate breathing independent from the ventilator during the day. Still a little early to tell yet but fingers are permanently crossed and some early indications are quietly promising. Weirdly there is a story in 'love it' magazine this week about a little guy with the same condition as jovie. Disappointingly short and simply written article, but a nice reminder that we are not alone...
Lots to look ahead to over the next little while. Still making the most of the simple little things along the way, bathing, cuddles little smiles and simply being the amazing little character she is. Early plans are in place for a party of all parties once we are finally out of here, to include a charity auction so anyone with any suggestions or items they could put up to be auctioned would be greatly appreciated. Obviously a date will be set once we have a discharge date and all and sundry will be invited!
Elsewhere we have had good fun watching England destroy India in the cricket together, while the much welcome return of the premier league highlights just how long we've been here.
Jovie herself continues to shine, her weight is good and she tolerates her ventilation perfectly. She now has two different circuits, one connected to a humidifier the other a dry circuit for her to get out and about on. She continues to enjoy her spells in the pushchair and sitting in her car seat too. Her awareness and interaction is brilliant, not sure where she gets her brains from but she's going to be a smart egg that's for sure.
Much to our absolute delight, all being well tomorrow she will get to experience the car seat for real for the very first time as a day trip to Worcester is planned! Another huge milestone on the road to getting home for good.
A road we are very much nearer an end too. Once we have sorted a home to go back to that is. Our training is nearly all done, and even Kelly has began hers. Once finished, and once we secure a house, all of which should be weeks rather than months away we will be good to go! Amazing and frightening in near equal measure.
Personally things haven't been better, with jovie doing so well I was able to make a flying visit over to gay Paris for the bros wedding. Great fun and amazing to see all the family. Was gutted not to have the two girls with me of course but really hoping everyone will get to meet her soon. Lorn is off on her own jaunty very soon with her own trip abroad for the big gay wedding of the year, giving me some quality time with madame! Its weddings galore over the next month and with progress going as well as it is we are genuinely hopeful jovie may be out in time to enjoy some of them too.
As for her condition, no further developments or indication about how she may tolerate breathing independent from the ventilator during the day. Still a little early to tell yet but fingers are permanently crossed and some early indications are quietly promising. Weirdly there is a story in 'love it' magazine this week about a little guy with the same condition as jovie. Disappointingly short and simply written article, but a nice reminder that we are not alone...
Lots to look ahead to over the next little while. Still making the most of the simple little things along the way, bathing, cuddles little smiles and simply being the amazing little character she is. Early plans are in place for a party of all parties once we are finally out of here, to include a charity auction so anyone with any suggestions or items they could put up to be auctioned would be greatly appreciated. Obviously a date will be set once we have a discharge date and all and sundry will be invited!
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