Wednesday, 30 July 2014

One Week Later...

So here we are, precisely one week to the day that I launched Nate's on line fundraising and it's been an absolute whirlwind.

Before I delve into what has happened since that point, I want to let you know what my expectations were prior to 'going live' with our fundraising efforts. I thought a goal of 1k would have been difficult to achieve and it would also require a lot of effort in the build up to the Great North Run to get close to such a landmark figure. If achieved we could purchase two pieces of sensory equipment to add to Nate's room. One being fibre optic lights (approx £400) to hang from the ceiling held within a fishing net. The other a fibre optic carpet (approx £600).

Nate loves close proximity sensory equipment. He engages with it like no other and it's great to see. As Nate attends school and a monthly respite hospice +St Oswalds Hospice  he becomes used to the high levels of attention and stimulation that he receives. Having these pieces of equipment within our home would further help his development and naturally see more progression from Nate.

This was without considering the fact I couldn't secure a play in the GNR through the ballot, so I've had to commit paying £300 to +St Oswalds Hospice to secure a place in order to raise cash. That £300 will be coming from my own pocket, it was a gamble but only time would tell whether this would pay off. What if fundraising didn't pay off? Well at least @glennkent had secured a place.

So as you know I published a blog about our journey through the last four years and the response was mind-blowing. Donations were coming in thick and fast and I was completely taken aback by everyones generosity. I know that sounds pretty formal but it's the truth. So much so that I even left work early that day just so I could reply to people on Nate's fundraising page

So the 1k target, well you all smashed my expectations to smithereens. It took a grand total of 8 hours to reach the 1k barrier. Our attempts to raise this amount achieved and Wednesday wasn't even over.

I say that because if my expectations to raise money were to be classed as low (given the response) then I didn't even consider the generous acts that may suddenly be landing at my feet (well DM inbox). I was contacted by with regards to art work donations by @23dawit and then later by @alsnotnutz. My only concern being, I didn't have the time to invest in running twitter auctions. I needn't have feared. The latter took the bull by the horns and before you know it there's at least four auctions relating to art work and then @shewore kindly donated cuff links to be added into the mix. This generous act has resulted in a further £405 being raised. Had nobody got in touch, then this wouldn't have been achieved. Thanks also to everyone who donated pieces to the auction, equally without your input, this wouldn't have been possible.

Did it stop there? Of course it didn't. @goonerdave66 had shared Nate's story, helped plug the initial auctions and things were gathering much more pace. In addition to this the amazing @buxtongooner offered to decorate Nate's new room , which in itself is a very nice gesture. When you couple it with the fact I live in Gateshead, it's even more mind-blowing. Tears of happiness filled my eyes.

You see twitter can be a wonderful place. I wouldn't quite say this went viral but when players like @leedixon2 RT Nate's story via @goonerdave66  then it adds an extra dimension. There's a lot of bad in the world and it was so refreshing to see the good in people. Good often doesn't get as much air time but here it most certainly does. You see many great charities raise millions of pounds but you don't necessarily see the impact all of your donations make. With Nate its going to be different, I'm going to take you on a journey with him. You've exceeded our initial goal, which has subsequently been adjusted to 2k and 3k both of which have been surpassed. If you follow @funds4nate then you will see glimpses into his life. I've already shared such simple but demanding tasks such as how do you bathe him and get his hair cut. Run of the mill tasks but so demanding when faced with a severely disabled child. When we buy equipment you will see Nate in action with it. Your donations have been that staggering that we've been able to broaden our horizons. Now we are able to afford, sensory tunnels (£1200) & interactive bubble tubes (£1000). It's going to be a sensory haven. A place where Nate can interact and enjoy the 'toys' that bring him the most pleasure.

Terms such as #arsenalfamily are massively overplayed, mainly for attention grabbing and like for like follow requests but in Nate's case it's about everyone embracing the needs of a little boy who needs your help. It didn't stop there either, fans of Chelsea, Man City, Liverpool, Newcastle,  Sunderland & Spurs to name but a few. This has been a collective effort and for that I am externally grateful to you all. Of course when it comes to football Nate is unlikely to experience the greatest game on earth but we all know how it is contributing to making his life more enjoyable. His life doesn't revolve around football.

So far we've received donations on every single day since last Wednesday. A current run of eight days in a row and our current fundraising total is £3505. INCREDIBLE

This blog is to THANK YOU ALL. It doesn't have to have resulted in a donation via yourself. The many kind words have helped us a family. We don't receive much in the way of positive feedback, we just try to crack on with our life, no matter how stressful. But the words of many provided a much needed boost. Something we are eternally grateful for. Then there's the sharing of posts, the more people this reaches the more impact it has. Don't be afraid to use they RT or Share option. That in itself is helping support Nate and again, it's really appreciated.

At present we've had 120 separate donations. A colossal amount. That doesn't include a 5aside competition on the 31st August arranged by @glennkent (also running for #funds4nate in the GNR). That's £50 a team and we currently have around 10 teams taking part. So add another £500 to that total. I have also had friends such as @jimmaz5, @rossgregory9 & @tails39 looking to arrange a talk in with a view to raising more money. This without me having to be directly involved in co-ordinating. These gestures mean a great deal to me and my family. We can never repay people for their efforts and I know that's not what you want but we feel we owe you all. So when I say thank you , it comes from the bottom of my heart and has us overcome with emotion. You're all working towards making my son's life that little but more easier and a bit more enjoyable and for that you're all apart of our family.

Wednesday, 23 July 2014

Nate's Story

Nate was born via emergency c-section on 26th July 2010. Neither I nor my wife were expecting any surprises, and for the first few hrs of his life things seemed fairly routine. Then Nate was admitted to special care and within hours we were told that Nate may have a serious life limiting genetic condition.

I had left my wife and son in hospital for a couple of hours as we had promised our daughter that her brother would have presents for her. I shot to a nearby Toys R Us to get her some presents (mainly so she didn’t feel left out). During this time I was told that Nate had gone to special care, but it didn’t seem to be anything to worry about as they were just looking at his tone (Initially I thought this was his colour but they actually meant muscle strength). 

Upon my return we were informed that the on-duty doctor needed to see us and we were shepherded onto a ward that had no patients and I started to realise all was not well. The news was broken to us, Nate was ill and they didn’t like his chances. Nate had presented three unusual characteristics; his ears were rotated more than expected, his eyes were too far apart and he couldn’t full extend his fingers, has wasn’t making any effort to do anything. Things were bad, very bad. They felt he had a serious genetic condition but the earliest we could see a geneticist was Tuesday (it was currently Saturday).
Meanwhile as the doctor was opening up to us ”had we noticed all of his unusual features?”, out of the corner of my eye I could see my parents making their way to see us, gifts and balloons in hand. Still to this day it breaks my heart to think that this moment of celebration was actually becoming more of a nightmare by the second.  He didn’t cry/scream, he didn’t feed, in fact he didn't do anything.  

So we embarked on a 28 day stay in special care.  Initially this involved a visit by the geneticist, who took quite invasive pictures of Nate’s unusual features. He didn’t (and still doesn’t) feel like an actual person to them, more a puzzle that frustrated them. A couple of days into his hospital stay I had to build myself up for my wife being told she needed to return home without our son. I hadn’t fared well in the first couple of days and my wife had to literally tell me to pull myself together. The heartache that caused was unbearable packing up her belongings, getting in the car and driving home. Where usually there would be family members, balloons and banners, there was nothing. It was as if you’d just come in from a day at work. Our family was separated, and it hurt. So we had a new routine. Nate was fed with expressed breast milk and overnight Nurses were trying all sorts of bottles and teats to try and get Nate to have some milk. I would rush to special care at 7am every morning and try and give him his milk, each and every day I hoped for the words “he’s demolished that bottle” or “his feeding has improved”, but they never came. It was a struggle and Nate would rarely take over 25ml, a pitiful amount. His sucking technique seemed flawed- he just didn’t have the strength to take a bottle. Nate was developing other issues- he needed oxygen. Meanwhile our 3 year old daughter needed our attention too. My wife and I started doing “shifts” to spend time with our daughter. I remember one day deciding I’d take her to the park so she could run around, thinking it would take my mind off things. After all, nice walks are supposed to help you relax. It didn’t work, her playing with other kids at the park made me think of her brother and what he would miss out on. 
About one week into Nate’s life he had a visit from a respiratory doctor from the Great North Children’s hospital. He arrived just as we were going home for an hour or so. He cast his professional eye over Nate and didn’t like his chances either. Based on what he saw, Nate didn’t have long to live. His drive to breathe was poor, so poor that if and when he grew the harder this would become. He advised us to tell our families to prepare for the worst. And so we did. So Nate is still days old and off we go to break this horrendous news. We did it in person. One of us waited in the car as the other entered the respective houses, if anything to minimise the heartbreak. What could anyone say? 

Nate with oxygen support
Nate began his journey to a diagnosis and had an MRI, ultrasounds, X rays, echo, blood, urine and chromosomal analysis, and seeing new health professionals such as a neurologist. I always hoped that one would give us some hope to cling to but it never happened. That said after a couple of weeks, home began to be mentioned. Obviously Nate couldn’t stay in special care forever, and the belief was that he wasn’t going to get any better. We had discussions about oxygen in the home and the local supplier was in touch. I didn’t know what to expect, then items like a concentrator and cylinders started arriving. It sounds daunting but it wasn’t anywhere near as bad as we thought. We had some hefty oxygen cylinders and lots of tubing to enable us to move Nate around. If we wanted to take him upstairs, he’d had to be detached from one cylinder and moved onto a portable cylinder as without oxygen he desaturated very quickly. It was a military operation. It was still a week or so before we took the leap in bringing him home but we had been hands on with Nate as much as possible. If a Nurse was doing something to look after Nate we wanted to know why and how we could do it. After all, these were our new parental tasks and if we didn’t know what to do then it was even more unlikely that we could take Nate home. I was focused on getting him home. That everything would be better once we got him home. We spent the best part of 12 hours per day in SCBU and even then I felt guilty for leaving each day.

We could see home was on the horizon and both my wife and I attended a meeting of about 10 NHS staff. We discussed Nate’s needs and who would be involved with our family. The main area of support was from the community nursing team, who would become very frequent visitors to our house as they helped expand our knowledge as parents and carers. Armed with oxygen, feeding equipment and an apnoea alarm Nate came home, I got to live the joyous feeling that leaving hospital brings. We could start our new lives. 

Hospital stay
The next big appointment was a sleep study at Newcastles’ Freeman hospital. The letter stated we’d go in, have the sleep study and find out the results within six weeks. Well within six hours of the sleep study we were transferred to the RVI’s Respiratory ward (where we stayed a long time). Nate’s carbon dioxide levels were through the roof. He basically had double the normal level of carbon dioxide in his body, which to you and I would mean we’d be out for the count, and he was stopping breathing a huge number of times every night dropping his sats very low. Nate needed a ventilator.  More bad news. Then something magical happened, within two days Nate’s little face lit up. He smiled. At first, I was taken aback but then he did it again. Tears of happiness rolled down my face. Something had worked for Nate, this mask and machine had helped my son do the unexpected. However, Nate needed to tolerate the mask and ventilation for at least 5 hrs a night to get the benefits, and the drs were still experimenting to get the pressures to the optimum level for Nate so he had to stay on the respiratory ward.

He likes a wriggle when he's asleep
This huge high had taken our minds off everything momentarily but it wasn’t long before things went sour again. At this point my wife and I rotated hospital stays as if we worked in a car factory or something, two nights on, two nights off. An opportunity to sleep without the disruption of saturation/heart rate alarms going off was a temporary respite.  I had managed to ensure I was at home on the 21st September 2010. It was the North London derby in the Carling Cup. I was going to unwind watching Arsenal play at White Hart Lane. A game that went to extra time that ended up in our favour. It brought me my old enjoyment of football, something I hadn’t felt for a while - football and I were becoming distant friends due to my hectic new life. As if to say my moment of happiness wasn’t allowed, in the middle of the night my wife called. When this happens you know something isn’t right and the conversation isn’t going to be pleasant. Rachel said “He stopped breathing, he had to be resuscitated after going blue”. What can you do or say?  He had come around and appeared okay but that shouldn’t happen. This then became the battle. When I first witnessed it, it was awful. As I raised the alarm for support and nurses and doctors came streaming in I remember just leaning against the wall, sliding down and feeling completely and utterly powerless. I had no control. Nate at this point was as familiar with his ventilator as were we. It was these apnoea episodes that were stopping us from returning home. After each episode the doctors wanted a week of good nights before we could go home. We finally brought Nate home again after about 7/8 weeks in hospital, we even managed to take him to center parcs a few weeks later. We faced the upcoming prospect of Christmas secretly thinking, this could be his only one. We were advised to make the most of the ‘good times’ as they were something that nobody could take away from us.

Did the apnoea episodes stop and never return? Sadly not. He stopped breathing at home. I whisked him out of his cot and gave CPR. He came around pretty quickly and the paramedics were there in a flash. How much can one family take?  Back to RVI we went. The constant feeling of one step forward two steps back would have been our slogan for the time. More difficult conversations awaited us, these now frequent apneas and resuscitation were going to impact on Nate’s brain and so we were advised the tracheotomy route needed to be considered. The thought of this device in Nate’s throat was unthinkable, it felt like he was slipping away from us. First the oxygen, then the ventilator and now this. I did however have a genuine feeling that this wasn’t the right thing to do. It had been noticed that the ventilation mask that covers Nate’s nose was riding up and it could be causing him to panic. His reaction might be then to shut down. We pushed for alternative masks and at the 11th hour suddenly there was a new one, and it fitted like a glove. A triangular silicon mask that offered enough room between his nose and upper lip. He started to sleep without the additional drama, with 2 parents on constant alert.

During our mammoth stay we met with the genetics team again. After negative results on an initial diagnosis. They wanted to try to pin the tail on the donkey once again. This time it required DNA being sent to the Netherlands as they had recently discovered a specific gene that could diagnosis a condition they felt would explain Nate. An 8 to 10 week wait beckoned and it was the beginning of October. A result was pending prior to Christmas. We actually had to probe for answers on a subsequent hospital stay and found a result had been received. It was again negative. You start to lose a lot of faith in the system when this occurs and I’d be lying if I said I had any faith in it at all. 

2010 was nearly at a close, Christmas was successfully navigated and a great time was had by all but the uncertainty of Nate’s future always had the seed planted regarding would this be his last one. A thought that stills remains now. What happened next? Lots of ambulance rides, hospital stays and periods of recovery. Most of that winter was spent in hospital. 

2011 though would be remembered for our return to Centre Parcs’ in Cumbria. This would now be our holiday of choice, as flying is an absolute no go in terms of risk and care. Staying in the UK is great but there is still the worry of being away from his drs who know and understand him, particularly without an underlying diagnosis. We’d again be 20/30 miles from the nearest hospital.  So off we set with my parents in tow. As my wife co-ordinated the shopping and unpacking I took my 4 year old daughter to a mini-crossbows training session. It’s not as brutal as it sounds, honest. She enjoyed it and it just so happened there was a sports bar in the complex. It would have been rude not to have dropped in for a cheeky pint with my dad. As I sat down and took my first sip/gulp my Dad’s phone rang, it was for me. It was Rachel. Nate had deteriorated and she was having to turn up his oxygen on at an alarming rate. Whenever Nate requires more oxygen we have to get him seen. The rate in which he goes from happy to extremely ill can change within 30 minutes. Paramedics were called but would be about 30 minutes. I grabbed the car and waited at the exit to follow them. We were checked into A&E at Carlisle and we were greeted by extremely helpful nurses and a very obnoxious doctor. We asked him to liaise with the RVI regarding Nate’s history. He declined, saying he could deal with this himself. Something we were highly unimpressed with. Subsequently Nate desaturated and before you know it he was being resuscitated and the team from the RVI PICU were en route. Yes, specialists from Newcastle travelling in an ambulance to come to our son’s aid. For Nate’s safety he had to be intubated and essentially vacuum packed to ensure he had a safe journey. We followed them over the time being around 2:00am while Nate was hooked up and settled I pulled together some tables in the waiting room and formed a bed before passing out through exhaustion. Helpfully the nurses found us beds for a few hrs on an empty ward. The next day was huge, we’d been advised this (being fully ventilated) was a situation we may find ourselves in and that Nate’s body may decide that it didn’t have the drive to keep working and could become reliant on the machines. We waited. And waited. Loud music was played to get him to stir and the doctors took the decision on the 2nd day to remove the tubing and see how Nate responded. As parents you are utterly powerless. We hoped for the best. I don’t know what is contained within the lad but he has a drive that is beyond any level imaginable, particularly for one fighting his own body. We had to leave intensive care every night as they don’t have beds for parents (which is totally understandable). Meanwhile our daughter remained on holiday with my parents blissfully unaware of the drama. I had some of Thea’s things in my car that hadn’t been unpacked and drove to Scotch Corner to hand my Dad her things then return to Newcastle. Emotional scenes again. I’d say this was an emotional roller coaster but then that includes highs, and we didn’t have many. It felt like life was beating us into submission. How much can a family take? Ridiculously once Nate had awoken his return to normal (for him) was swift and we escaped on the Friday, literally hours before our daughter arrived home and still to this day, she has no idea what had happened. 

NG tube used to vent his stomach
Nate had dodged a bullet but things still weren’t easy. His difficulties drinking bottles were still on going, his consumption of air is quite a talent, filling his stomach and aggressively burping or worse still needing his stomach venting via his feeding tube. We needed this looking at and consultants were torn. Did this lad require a gastrostomy op just to deal with his stomach filling with air? The answer was yes. We needed to convince a few but we got there. So the op date was set for 31st January 2013. Nate got put under another GA and away he went for surgery. We were told the op would take approximately two hours. In the RVI there’s little to do it’s a case of either go to Costa or sit in his room and await the call. You combine the both, comfort eating whilst you realise that someone is performing surgery on your son. After about 45 minutes we were told that Nate is in recovery and we can see him. He needs his ventilator post op as he is weak and my wife and I get this hooked up ASAP and ensure he’s coping. However en route we realised that this op is over way ahead of time, something was up. His stomach wasn’t where it should have been, it was much higher than first thought. A waste of a GA and frustration on our part. How had nobody checked this and most important of all, when would we be able to come back. The answer was 5 months, this time he would face a much more invasive operation, entering via his belly button and not through his throat. His stomach would be pulled down and attached to the outer wall. All this for an already severely disabled child. Yet again, he passed with flying colours. He was naturally in pain but he exceeded his recovery time by two days and we only spent the weekend in hospital. It was now over to us to get used to his new equipment. Baring in mind Nate comes with oxygen, ventilator, saturation monitor, suction machine and now a feeding machine. We didn’t want Nate to lose the enjoyment of his bottle but over time it was the best decision that he takes as little as possible via his mouth. 

This year, finally, we received a diagnosis for Nate of ATR-X syndrome. It explains all of his odd symptoms and health problems (too many to mention) but it’s still very rare and even the expert in this syndrome can’t tell us anything about the future.

I’ve written quite a bit and I’ve missed out many things- Nate successfully coming off oxygen during the day, the many ad-hoc hospital stays where he has been seriously ill, other ops, Nate starting school, issues with his legs and feet, the trials off his ventilator (albeit unsuccessfully) and his amazing sister that has held our family together. 

This is the part now where you can (if at all possible) help. Nate would benefit from equipment we cannot afford. 

So far we have used money from kind donations, and fundraising to purchase 

Sensory Toys  - £300 
A p pod beanbag chair - £500 
A trike - £1900
Projector and tent - £230
Playmats - £200
Upsee- £175
Specialist physio - £300 (every six months)
Special blender- 350

We are in the process of swapping rooms with Nate in our house. The time has come for him to command the biggest room in house, he has a through floor lift (local authority funded) and hoist tracking throughout the house. Nate is happy boy and we just want to give him every possible chance to eek out every drop of potential that he may have. At his end of year school meeting they discussed his ability to stand for 30 minutes in his stander and how we may want to consider training Nate to use a toilet. Two things that bring joy and happiness to us all, even just the mention of it.  

We are looking to change Nate’s room into a full on bedroom/sensory room. Something he adores and interacts well with. So giant bubble towers with interact switches, fibre optic lights and musical melodies are the order of the day (for starters) and this can be Nate’s place. 

So on the 7th September both myself and my friend Glenn Kent are running the Great North Run to raise as much money as possible to make this happen. Then on 19th October I will tackling The 10k Stampede in Gosforth along with the Ian Clark, Jamie Devlin, David Bond, Marc Duffy & Paul McCrindle. Of course the more we raise the better as every penny counts.  If you would like to donate then you can do so here

Thank you.