Long Overdue Rant

Zachs infant life will never be without interference and it is starting to piss me off. He’s 2 and he isn’t in a proper nursery yet. Its not because we don’t want him there its purely because the system does not allow an easy transition for him.

Zach needs a trained carer to be at nursery with him. This carer will cost money. And this is where the problem starts. There is a policy and a procedure for everything. You’d think it was simple. We want Zach to experience a nursery, to play with other children and to learn what they learn. But because he has some medical problems he is classed as ‘different’. We have shed tears over this ridiculous situation of dealing with a system riddled with policies that are not fit for practice.

Can you believe that for insurance reasons we cannot get him the nursery hours that we want him to get. Health and safety and insurance and a panel of unknown souls are dictating the education of my son. We have people come around the house and give us the condescending taps on the shoulder and the sympathetic eyes when all I really care them to do is do there job, or go away. But instead they loiter and fail.

They write there reports, they file there thoughts and they leave us exactly where they found us. No I tell a lie, they leave us lower than we were before after offering false hope. I look around everyday where money is wasted on the lives of people that don’t want them. Would anybody really begrudge Zach having an education and catching up with other children of the same age using money from the system?

A recent report ‘Recommended’ where Zach should be placed. What right do they have to do this? Have they had a lifetime of intervention and suggestions of how to raise there child. I doubt it. But for some reason they wish to pass judgement my way.

Can you tell the ‘Brave Faces’ that we always wear are becoming thin, and in some cases faked.

Meanwhile…………… Zach is doing very well. He’s taller, chubbier and his personality borders on the cheeky meaning he will get away with most things. The above is made easier to deal with knowing that Vikki has made Zach the wonder that he is today. He’s polite, he’s loving and he’s ours. I love them both very much, and on occasions I quite like the dog as well.

On the 11th October 2013 Vikki has planned for a Charity Event to be held at Somerset County Cricket Club. We hope to raise as much money as possible for Bristol Children’s Hospital Intensive Care Unit, who helped Zach medically, and Taunton Opportunity Group, who helped Zachs development.

Tickets are available from the email charityrocks@mail.com

Or check out the Facebook Group http://www.facebook.com/CharityRocksTaunton

Or Tweet us at @charityr0cks

We need bums on seats, hands in pockets and prizes to be won. If you can help with anything here please let us know.

Thanks for reading and supporting us as always

Posted in Uncategorized | 1 Comment

Back Again…

Back Again…

It’s been a while since I’ve written about Zach and its because I just don’t have time. When Zach was seriously I’ll in hospital that’s all I had. i spent that time learning, writing and reflecting. But now he doesn’t give me a second.

Zach is a walking, talking, signing, eating little boy. And I love it.

Medically he still has some problems. He still needs his ventilator to help him breathe but for two hours everyday, he is free to roam without it. He gets four half an hour slots. During this time he’s at his most active. This used to concern us because he had no breathing support and there was no stopping him. We thought we should keep him at arms length whilst he got used to the new sensation of freedom, but all we did was restrict his playtime. Now as long as I can hear him I’m happy. He climbs stairs, plays hide and seek, explores the garden and somehow always ends up in a hat.

His cardiac problems have also been a concern. 3o’clock in the morning normally comes and goes for you all without incident. It’s been different for us lately. Zach’s heart function has deteriorated from missing beats, to not beating at times. It’s called a Total Heart Block and always happened at night.

We discussed this with a consultant and he told us the solution. We were in a side room of the children’s hospital when we were told the Zach needed a Pacemaker. We both sat and took this information in and time passed without either of us saying a word. I was seeing it as a bad thing. A Pacemaker can not be a positive. Zach wasn’t even 2.

Then “Uh-Oh”. Zach broke the silence with perfect comedy timing and the perfect phrase.

The consultant talked us through all of the positives and looking at the bigger picture it was a positive. A shock, but a positive shock.

The next step for Zach would be another operation. My little boys already scarred body had to be scarred again. It just isn’t what any parent wants. Every scar has a story but for Zach none of them are falling off a swing, or off a trike or slipping on gravel. Zachs are for open heart surgery and a tracheostomy and a diaphragm plication, and some more heart surgery. Not the innocent scars of growing up every family expects.

Our first two appointments for surgery both arrived with news of cancellations. The intensive care unit has about 18beds and all were full 24hrs a day for a few weeks. Zach wasn’t at the top of the list with his heart problem so it gives you an idea what other parents are going through in those four walls.

But it’s been done now. Zach has a Pacemaker in place to ensure his heart doesn’t go too slow. That’s all it does. If he’s fine it doesn’t do anything. If his rate falls to what is seen as too low he will get some help. Below 55 beats per minute is when he gets some help. His rate has been as low as 35. Which is low.

Zach went into surgery at 3:30pm. We took him to the theatre with his good luck toys, Sam and Pup. They’ve been to every operation with him. He went to sleep in my arms and we placed him on the bed and left the room. For those who haven’t had to do this it is a truly awful experience. I hate it. I try to stay strong for Zach and Vikki but the watery sheen in my eyes and lack of conversation says different.

3 and a half hours later and he’s back. He has a morphine infusion for pain. Anti-biotics are given to prevent infection. A tube is coming from the side of his body to drain any excess fluid from his chest. Basically blood. He’s monitored on his chest, his hands and his feet. He has arterial lines and femoral lines and because Zach has been ‘difficult’ before they put in a venous line too as a just incase. He is connected to a ventilator which is doing all of his breathing as opposed to assisting him like normal and he has blood stains on him.

We get to cleaning him up but are interrupted because of the need for an x-ray. We’re told he’ll need an ultrasound the next day to check his arteries and veins and they’ll be a further x-ray done too. But he should be discharged. We couldn’t see him leaving next week let alone the next day. He’s unsettled initially but pain relief, a belly full of milk and a nurse we trust makes the evening run smoother. When it’s dark we leave. Not a lot we can do and exhaustion won’t help us one bit.

20hrs after Zach came out of surgery he gets discharged. He still had stitches in protected by a dressing and the evidence of his surgery was still dotted around the room. But we were discharged. We readied ourselves for a busy couple days of doing anything we could to ease the pain he might be in but we hit a slight problem. And that problem was Zach. He refused to get in his pushchair, grabbed his Mummy’s hand and walked out of intensive care waving to doctors, nurses and some other patients. “Bye, bye”.

I would have cried with pride but I had to catch him up carrying all his bags and my energy went into smiling.

20hrs after having a Pacemaker attached to his heart he got up and walked out of that ward. An amazing sight which inspired me.

Once at home as he was in his highchair we Skyped Granny, Pops, Great Aunty Pauline, Great Uncle Robbie and Great Granny. I think they were shocked how well he looked as well. Then it was bedtime for him. A mind blowing couple of days ending with Zach showing the world that he can cope with anything and do it whilst smiling.

I love my son and my wife a lot. This only makes me love them more. I just hope that for a while at least Zach can grow, his mind can develop and we can just enjoy being a family.

Now, we are trying to raise money again for those that have helped Zach. Taunton Opportunity Group and Bristol Childrens Hospital Intensive Care Unit. On the 11th October 2013 we are hosting a Charity Night at Somerset County Cricket Ground. It will be an evening of food, drink, black ties, high heels and raising money.
Follow us on twitter @charityr0cks or find us at Facebook.com/CharityRocksTaunton for information and your chance to take part. We need sponsors, donations and helpers.

As always, thanks for the support and for reading.

Posted in Uncategorized | Tagged , | 1 Comment

Here it is… another blog. In these past 2-3 months i have started to write some others. But they all ended up looking back on where we were. I want to look at where we are now. We are a mummy, a daddy, a son and a dog living at home. This is the simplest way i can put it. And i think its also the best way it can be described.

I work full time so miss out on all of those things working parents miss out on. I swear that every day Zach has improved in some little way. Vikki beams with pride as she tells me what he has learnt today. And Zach cheekily claps every story that gets told.

We have managed to get Zach into two playgroups. One is specifically aimed at children with disabilities. Its called Taunton Opportunity Group. Every activity is aimed at development. Every child would benefit from spending some time there. This week i was able to take him for the first time. He loves it. There were activities to test his sense of smell, his touch and his socialisation. Every child there is at a different level of ability and development but they all enjoy it.

Its also a chance for Zach to show off his sign language. Yes, he can sign. Not just pointing. The first one was difficult but the rest seem to be following quicker and quicker. Its amazing to see him communicating. Vocally he was always going to be a bit behind as the tracheotomy bypasses his vocal cords, so he’s found another way to get his point across. Its useful for all of us. Book seems to be his favourite sign. This has meant that we now have a library in the house.

The second group we go to is at a children’s centre. Its all about singing songs, doing arts and crafts and again socialising. Zach has again been accepted into the group. Other parents must take time to get used to him and his baggage but there children just get on with it. Its an age where nobody is judged. Again this week was my first time at the group. Shifts mean that i am normally working when the classes are on.

I watched a programme recently about a family having to watch there child go through surgery. I was just about to say to Vikki that it must be awful to go through that as a parent. I had totally forgotten I had been through that. Brought a lump to my throat. Then a little chuckle. How had I forgotten about all that? I think it shows how far we have moved on. So far I have forgotten where we have come from. Its only been 5 months since we left hospital, but it feels a lot longer.

We’ve also had some photos done of Zach. Unfortunately for him i had to be in some too so for once it wasn’t all about him. I’ve attached a pic above. Thanks to Venetia for capturing my good side, i just haven’t attached one of those pics. Its back to being all about the boy again.

Thanks to everyone for reading and for asking when I would blog again. Hopefully another will follow soon, but Zach, work and Vikki keep me busy.

Posted in Uncategorized | Leave a comment

It’s been a while since I had the time to blog. These 2 months have given me some really great memories. The little things in Zachs life are happening all of the time and he’s at home For us to appreciate them.

He has really developed into a brilliant little boy. I say boy because I just don’t think of him as a baby. He’s developed so quickly. His nature is so cheery and happy. He’s not a boy that cries or that gets frustrated. I spend hours sitting and watching him play and work things out. Just simply passing a building block between his hands is a joy to watch. His face is etched with a massive smile beaming with pride. I am loving being a dad.

Zach has worked out that sitting still isn’t the place to be. He wants to be up and crawling around. But he wants to be 5cm further than his ventilator tubing allows. This doesn’t stop him though. He’ll just crawl and not look back. Behind him one of us will be wheeling his equipment to catch up with him, or if our back is turned there’ll be a humidifier on it’s side, a wire unplugged and an alarm or two sounding. Zach meanwhile will be sat down with a big toothy grin and his hands in the air. I’m sure that he knows what he’s done, and he finds it’s funny.

He’s also learning how to walk. He didn’t do either for months, now he’s decided to get them both out of the way quickly. Walking is a bit easier to control. We put his ventilator onto a little wooden wagon and he pushes himself and his kit around with him. He doesn’t know it yet but he’s getting his independence, and I’m saving my back

Zachs first operation was when he was 9 days old and since that time it was found out that he had a breathing problem. Since then he has had opportunities to come off of the ventilator but he hasn’t medically been able to cope breathing on his own. So it is a show of his strength and determination that he can start to have time breathing on his own. He’s getting 10 minutes a day not attached to anything. This is a large step forward, but if we were to rush him he could take a two-footed jump back. We don’t want that to happen. I don’t want my selfishness to hinder his medical progress.

The complications though could be serious, such as a collapsed lung. Zach has suffered from these before but in the right place it’s suitably resolved. If we were at home or out it would be tough to control. A very good reason to take our time with progress. We will make it, but Zach’s cardiac and respiratory system is in control. We’ll just work with it.

The last two months have had there stresses though. Carers. Can’t live with them. Wouldn’t get any sleep without them. I need to get over the fact that we have them. It’s not a natural place to be. I have longed for the family time and sometimes I have a carer stood in the background. Since we first started having help we have had to ask two of them to leave our team. The first we just didn’t believe would look after Zach successfully. In a short time we saw so many problems and failings in her. But some things just aren’t supposed to

The second was a diffent matter. We allow these people into our house to care for our son. Our home contains our property. Our private possessions. And one of the carers snooper and admitted it. But she then denied it to the community team. We told them that unless an apology came our way she would not be welcome in our house. We have received no apology so we will cover her work ourselves. I don’t mind though. If I could I’d do it all. But I can’t.

And that’s what makes me sad. I need help to look after my son. So that’s our next goal, make it just the three of us.

Thanks all for your continued support.

Posted in Uncategorized | Tagged , | 1 Comment

Birthday Time

I’m just recovering from one of Zachs first parties. It was his birthday on thursday. He’s now a 1 year old.

I’m sure that in a few years time I’ll take on the same theory that a certain friend of ours does. It’s a simple rule that means less stress and more presents for the birthday boy. Don’t host parties. I enjoyed it today and I’ll enjoy the rest of the week but next year, I might avoid it.

This year has been a long year. It’s been eventful but rewarding and we have come out of it in a strong place. Zach is a very rounded social baby because of it. We’ve met so many people and have been helped by so many others. Everybody linked to the NHS has wanted the same thing, for us not to be in hospital. And for once it wasn’t budget based. Zach just needed to be at home with us. This is one of lifes simple rules and it means a lot to me. More every time I read it.

“Children belong with those who love them the most”

Zach has been at home with us for a 2 week stretch now. I want to say it’s the longest that we’ve had him but I can’t be sure to be honest. We’ve had him at home lots now. But before it was a case of having to take him back. It left us staring at the calendar knowing that in 2 nights we’d have to take him back to the hospital and then 1 night, then back. Now i know that he will not go back to the hospital. We’ll just fight tiredness to keep him with us. Being awake for 18,19 sometimes 20 hours is tough. Then having to mix medication carries its pressures. Needs to be done though.

This week is Zach’s D-Day. The big D is when he gets discharged from hospital and is no longer one of there patients. This is a monumental day to remember. We first thought we’d be in hospital for 3 weeks, but it will officially be 1 year and 4 days.

This does actually pose a problem for us because he has two rooms. Both are full of toys, clothes,photos and medical supplies. We have to now try and get all of this into one room. His bedroom. We wanted his ward room to be a bedroom. We tried to cover up the sterile features of the room with bright pictures and soft toys. It worked for us for so long but the constant smell of alcohol gel just couldn’t be disguised. I sometimes felt sorry for other babies who were only in for short periods. The stressful situation made worse by the stale environment.

But looking at it from the other direction they may have felt sorry for us living in hospital and moving our lives into a ward.

It seems that some days the year has been a blur. Where has it gone? I’ve been told that for some it’s flown by watching our story. I can tell you that sometimes it just hasn’t. 9 hours waiting for word whether a dangerous operation has been successful does not fly by. That drags. Those days have seemed like a lot longer. But without them we may be more naive as parents. The emotional lows and the euphoric highs have made us.

But would I change the last 12 months? If Zach is the result I’d do it again. I love my boy.

Posted in Uncategorized | 2 Comments

Bristol Revisited

We’re back in Bristol. Only for a few days but it really does just drag you down being here.

We didn’t want to come back but medical needs meant we had to for Zach. Even the drive into the city just dampened our moods. The last time we came for a few nights it turned into this blog, quite simply put. Nights can turn into weeks and then months very easily. But this time we hope it’s different. Sunday we came in and Tuesday we want to get back out. So far so good.

Zach today has had a couple intrusive tests which come with there long list of risks. These vary from infection, to transfusion, to stroke and onto death. These words are written down, then talked about incase we missed them and then we sign for it. We give consent for Zach to be open to those risks. I really do just want a ‘i have a sick child and want him to get better’ form. None of us go into hospitals expecting no risks, but we just have to sign our understanding of it.

But back to the tests. They were to check on his cardiac and respiratory problems, the big ones really. We took Zach down and he was put to sleep. He fell asleep in Vikki’s arms. This worked better for us. It wasn’t a struggle, infact far from it. As Zach was given the gas he let out a big yawn and nodded off. We left him with his good luck toys, Pup and Sam. For those that know about his duck, Cordy Roy, this is the only place he doesn’t go with Zach. After 15+ procedures we stick with what works, Pup and Sam work.

Today we wasted time buying clothes for a fancy dress next week and a bit of lunch. Takeaway of course. We ate it waiting for word to go and get him. It must have been 2hrs sat around but always worth it. We edged to his bed and asked about his state of consciousness to find him rolling over and giving us a look. Re-united again.

Then he came back to our little side room. The one key word to remember when trying to help Zach over some tests is ‘paracetemol’. He’s had lines put into arteries around his body which bruise him. So we try and ease the pain and let him sleep. He nodded off around 3pm and woke with a smile, a stretch and a yawn the next morning at around 6.

Vikki and I didn’t have the same spring chicken look to us however. We did 2 and a half hour shifts through the night. This basically breaks down into not enough sleep to keep us going. But one thing that did manage to lift our drowsy eyes was a visit to intensive care. A visit. Our choice. Our chance to show him off. We loved it. Nurses flocked around us, well Zach really. It was really good to see everyone and to leave shortly afterwards, with Zach.

One of the major results from the test was that Zach had a different tracheostomy fitted. This means that he can make noise. Beautiful chirping comes from him now. Even his crying is angelic, most of the time. We do actually smile when he cries. Vikki and I give each other a look of contentment, pride and love. Our little man has come through it all and is making noise.

The change in trache means he’s getting bigger and stronger and better. He can now tolerate this different trache where 3 months ago he wouldn’t have. The details are long and wordy so getting bigger and better says it all. We’ll have to have more of these tests though. They’ll be tough to get through but the 3 of us will manage it, well 4 including the dog. He is important to Zach’s recovery and our progress into family life at home.

Home. A big word full of meanings, hurdles and targets. Our team is coming together to get Zach home. We have carers being trained up and we’re helping to do that. Every day we’ll answer the same questions about Zach, correct the same mistakes and hope for privacy. The routine of life means we may have 3hours of us time. This us time though will be when we have to clean, tidy, eat, relax and prepare for the carer to be in at 10pm. And if I’m on a late we get none.

By the time I’m home Zach will be in bed asleep, Vikki will be in bed asleep and someone will be sat in my lounge. That means I don’t get the chance to sit down after work. If I do sit down I will have to make conversation. They are there to help and without them there would be no us, I’ll just have to get used to it.

This blog was started in the ward in Bristol in the middle of the night and finished quietly at home watching Zach sleep as the rain falls outside. The finish has been better than the end but no more important.

Posted in Uncategorized | Tagged , , | 8 Comments

The End Is In Sight

I’d say in all honesty it’s been a great month. Zach has had good days, grumpy days and a mix of both days, but what baby doesn’t.

We’re getting more confident about taking him out now and just getting things done. Trips to the shop and park are more frequent with the bigger goals of days away on the horizon. The park means one thing for Zach, hogging rides. He loves to sit and swing and doesn’t care who’s waiting for them. Neither do we to be honest. To get to that park it’s been more than just our 5 minute walk.

Before we started getting out I was worried about people saying things and giving us looks. I’m sure I miss more than I see. Doesn’t always bother me. Lack of understanding is the problem I think. Not everyone in our family understands so a person walking by certainly won’t. I’d happily talk to them about Zach all day long, these people though are the classic ones that stare and then pretend they weren’t.

Just today we’ve been out. One minute Zach was playing his games and going through his repertoire of tricks. The next he was gagging, his face going bright red and we needed to suction the secretions from his trache. Soon after that he was fine again. Nothing a cuddle, some calm and a fresh nappy doesn’t fix. This 5 minutes did receive some questions from onlookers. When we went to change his nappy it was presumed we were doing complex medical procedures on him. There was a time that for me a nappy change was complex, but now its just a nappy change.

We are still in hospital by the way and hopefully getting closer to the end now. It’s got to be. Zach is 10 months old and I just don’t want to do it anymore. Everything anybody does in hospital now annoys me. They have there jobs to do so have things they need to do.

It’s nothing personal, nothing at all. Without them we wouldn’t have the skills to care for Zach. But we can now care for him totally and truly. We want to get home and just visit a hospital knowing we can leave in less than 10 months time. If any nurses are reading this you do good work, great work even, however we want to do our job as parents now. Any person will have there own views on what’s best to do for a child. Good, decent and loving parents want there child at home with them. And as Zach is medically ready to do that, that’s all we want to.

We are eternally grateful to the NHS. The people that insult them are those that don’t respect it, take advantage of it and don’t deserve it. The bill for Zachs care is big. We have an approximate idea of the cost of the care he has received and I’d say it’s worth every penny. to think people complain about the car parking prices when just inside the building a friend or family member is being helped. I’d certainly pay £8 a day for that.

Our goal is to have Zach home before his first birthday. 2 months and counting until a great big celebration. We have no idea what we’ll do, or where it will be. We do know though it’ll be a chance to share our joy with those who have been with us throughout. Zach won’t have a clue what’s going on. We’ll just take lots of pictures to show him another day.

Posted in Uncategorized | Tagged , , | 4 Comments