Wednesday, 19 November 2014

Hugh's First Packed Lunch

Mmmmm ... luminous green mush!
Hugh took his first ever packed lunch to school yesterday – smoked salmon, cream cheese, broccoli, cauliflower and spinach, - a little bit fancier than his big brother Sean’s usual cucumber sandwiches and a lot more fiddly.  Blended to a pureed consistency it looked radioactive with its luminous green glow but I felt so proud being able to send in ‘real’ food.

You see, for the last three years Hugh has been fed by a tube.  Initially an NG (naso-gastric)tube – a tube that passed up his nose, down his oesophagus to his stomach, then via a gastrosotomy (a surgical opening into the stomach via the abdomen) through a device known as a PEG (Percutaneous endoscopic gastrostomy) and now a mini button.  Prior to tube feeding, Hugh had fed orally.  At 14 months I was still struggling to wean him and he was mostly bottle fed, though he managed some purees.  Apart from severe reflux issues early on, which were resolved with a cocktail of drugs and changing his milk formula, he was managing to gain weight adequately so although his feeding wasn’t really age appropriate we weren’t overly concerned. 

L-R: The NG, The G-Tube, the button (photo credit for G tube)

That all changed however, when a long and dangerous run of seizures left Hugh unable to swallow.  In fact the seizures, and drugs used to stop them, had a devastating effect, robbing him of his ability to roll, to lift his head, even to smile.  While he recovered on the high dependency unit, he was fed through an NG tube and as time passed and he started to improve enough that coming home looked likely, we were trained in how to feed him using the tube.  I was devastated.  I was under no illusions that Hugh was developing typically, but this tube, taped to the side of his face, marked him out as different.  Tube feeding felt like such a step backwards in a world where our steps forward were so few anyway.  I’d previously sat waiting for hospital appointments and seen posters offering support to tube-feeding families and thought ‘at least we don’t have to deal with that’.  I was assured though that it was only a temporary measure while he recovered from the effects of the seizures.  I remember a speech and language therapist coming to see us on the ward before we were discharged (speech and language therapists also deal with feeding and swallowing issues as well as communication) and discussing surgical options for tube feeding.  I looked at her aghast, disgusted even, explaining that we didn’t need to think about that, as his tube was only a temporary measure and he’d be eating orally by the end of September.  That was in July 2011! (You can read a little bit more about this time here: Six months on from an epilepsy diagnosis)

As time went on, I began to see the benefits of the tube.  Instead of being admitted to hospital every time he got ill, I could keep him fed or at least hydrated at home.  Previously, any bug – coughs, colds, sickness and diarrhoea – would leave Hugh too tired and weak to eat or drink.  It would be impossible to get fluid or medication into him and he’d invariably end up having lots of seizures and become dehydrated.  The tube made managing that a bit easier.  But the down side was his poor little face, my God, it was red raw.  He’d pull the tube out at all hours of the day and night ripping the surgical tape from his face as he did so.  He wore socks on his hands constantly to try to stop him grabbing it and I changed the tape daily as he would try to rub it off with the back of his sock-covered hand.  Re-passing the tube was a nightmare, during the day the community nurse would come and do it, but at night we’d have to take him to hospital.  Often parents are trained to pass tubes themselves but we were advised that because Hugh was so difficult to pass a tube on and fought it so much that it was safer to get a nurse to do it.  I would have to pin him down while he screamed, held his breath and went blue in pain and anger.  Invariably they’d draw blood.  We’ve since discovered that his adenoids were huge and his tonsils almost touching so it’s no wonder it was so difficult and painful.  At that time though it was necessary but I felt so evil pinning him down while he screamed and cried.  Poor Sean witnessed it once; he was only two at the time.  He sobbed for ages and was really distrustful of any nurses that came to the house for a long time after that.

I tried my hardest to wean Hugh but seizures and illness made it impossible, so a year after having the NG tube, I was begging for a gastrostomy – at least the skin on his face could recover (by now the stigma of a tube was the least of my concerns) and we wouldn’t have to fight him so frequently to re-pass the tube.  He’d also get to use his hands again – they could come out of the socks!

Cauliflower cheese anyone?  Anyone?
Since then we’ve persevered with the weaning.  There have been peaks and troughs – times when he’s managed a full days worth of food orally and times when he struggles to swallow at all.  Like most areas of Hugh’s life, progress moves at a glacial pace.  Being on the ketogenic diet (for hisepilepsy) makes it all slightly more complicated because he has to have a very specific ratio of fat and carbohydrate, plus everything needs to be blended to a purée consistency.  But we’ve persevered, invested in a high tech blender and fancy digital scales and I make batches of meals for him and freeze them.  Sometimes he’ll manage quite a bit, other times it’s just a mouthful or two before he gags or gets tired. When he comes home from school he’s usually far too tired so lately weekends and holidays have been the only times I’ve been able to really pursue this.

However, yesterday, the speech and language therapist assessed his feeding at school and has given the green light to say that Hugh is safe to have tasters of food at school now too.  This is fantastic news and in Hugh terms a real leap in progress.  From now on, when he’s well enough, he’ll be having small amounts of food at lunch time, just little tasters but hopefully this will progress to larger quantities.  Hugh used to always be so motivated by food – when he was little, we always seen the most intentional communication around meal times (i.e. shouting to mean “hurry up mum give me some more”) so I’m really hoping that it will help in this area too.  The routine of being able to do this regularly at a set time every day is bound to help him too.

So while at first glance sending a packed lunch into school for a 4 year old child doesn’t seem such a big deal, for us it’s a huge achievement and I hope that it’s the start of many more small steps in the right direction.

What's for pudding?

Ethans Escapades

Wednesday, 5 November 2014

Watching And Waiting

You might see me with Hugh, chat to us, see me walking to the shops and think everything is normal, fine, relaxed. Have you ever seen me hold his hand while I talk to you? This is not just to give him comfort that I'm there (he's severely visually impaired) but also so that I can spot instantly if he has a seizure even if I'm not looking directly at him. I'm constantly watching Hugh - his fingertips, the end of his nose, the way his toes wriggle or his eyes move. Fingertips, nose and earlobes are the first to turn blue if he stops breathing. Hugh might be happily facing away from me whilst I chat, but I'll be glancing at his fingers or the way his legs are moving without you even knowing. 

At one point all we did was wait for the next seizure. They dominated our lives entirely. I couldn't leave Hugh alone, not for a second, just in case. I couldn't pop into the kitchen, or upstairs to the bathroom without taking him with me. I'd been caught out before- he'd turned blue in my absence, so I didn't leave his side. I couldn't toilet train Sean- it would mean leaving Hugh. And when things got really bad, we were confined to the house- the very realistic fear of resuscitating him in public, whilst trying to look after a willfull 2 year old Sean was just too much for me to manage. With the help of friends and neighbours Sean was taken to nursery a few times a week and Hugh and I lived as virtual prisoners. During that time I spent my days and nights waiting for the next big seizure. Sometimes it'd be hours later, sometimes days. If we got past 7 days I became anxious, knowing the next one was sure to hit soon. The worry was always- would he recover from this one, or would this be the one that takes him? Perversely there was almost a sense of relief when the seizure had happened- at least it was over and he was ok.

Living like that was exhausting. Being constantly on high alert, never sleeping just dosing. I slept holding Hugh's hand either through the bars of his cot or with him in the bed next to us so I'd know if he stopped breathing. We had no monitors then, no oxygen, no bag and mask. Just Stephen and I giving mouth to mouth to our baby at all hours of the day and night. 

The SATs monitor gave us some relief knowing that if we were too exhausted for our seizure-sixth-sense to kick in it would alarm when his oxygen levels plummeted. Then we were provided with a bag and mask and oxygen to resuscitate him, which felt more calm and controlled than giving mouth to mouth. 

As the gap between the seizures grew, thanks to the ketogenic diet, the danger seemed less imminent. As month after month passed without Hugh turning blue or needing mouth-to-mouth the adrenaline eased and whilst I wasn't quite poised at the starting line, ready to dash at the gunshot I was still hovering, waiting, watching. 
I always feel like someone is watching me!

Hugh continues to have seizures about 3-4 times a week, mostly at night. They tend to just involve some teeth grinding and odd movements. He continues to breathe throughout, they don't upset him so we just let them pass naturally. We had a huge period of 9 months where he hadn't stopped breathing but lately they've been creeping back in. Illness is always a worry, it's a well known trigger for seizures and this has certainly proved to be true for Hugh. It doesn't have to be a significant illness either, simple coughs and colds can send Hugh's brain activity into overdrive and before we know it he's being blue-lighted to the nearest hospital. He's been very ill and not had bad seizures though and he's been fine and had horrendous ones. He's a little conundrum. The unpredictability of it is unsettling. It could literally happen at any time, with no warning.

So we watch and we wait.

The events of the last few months have thrown me a bit. I'd kind of hoped he'd grown out of the scary type of seizure, but if anything they have returned with a vengeance. Instead of being controlled with rescue medication in the house, he's needed hospital admissions and IV drugs to bring him round. The past still haunts me and I dread the day we ever return to living like that. I hope and pray it won't come to that though. We're back at the stage where our reactions to the SATs monitor alarm are lightening bolt, whereas previously I'd amble in fairly confident it was set off by a wriggly toe. I'm constantly checking him in the mirror while driving and keeping him close at all times. It's been just over a week since he last stopped breathing so it'll be a while before I'll be ready to relax a bit. In the meantime Hugh continues to be his happy cheeky smiley little self, oblivious to the extra worry he causes. 

Monday, 22 September 2014

Vote For Splats (please)

When Sean was a baby I brought him to all the groups – mother and toddler sessions, stay and play, rhythm time, baby signing ...  More often than not I was marginally embarrassed that he was more interested in plug sockets and trying to escape out of windows than in signing anything and would rather eat the maracas than shake them.  But it was all par for the course.  I exchanged pleasantries with other parents and for the most part both Sean and I enjoyed ourselves.

When I had Hugh, I had to contend with two children under two.  Trying to get both boys fed and dressed and bundled into the car to attend any mother and toddler groups was like mission impossible.  Invariably there’d be a last minute emergency nappy change just as I opened the front door and we’d rock up embarrassingly fashionably late all flushed and unkempt looking. But we tried and succeeded on many occasion.

As Hugh got older, attending groups became more and more awkward.  In fairness, no-one intentionally made it difficult, but I found it hard to watch the other children progressing while Hugh did little more than sleep.  Investigations into his delays were only just beginning so I had no handy answer to explain why he still wasn’t rolling/sitting/reaching for toys.  He still doesn’t have a diagnosis so that neat little answer continues to elude me.  As other parents celebrated their child’s progress I felt increasingly uncomfortable and as the gap between Hugh and his peers grew ever wider I began to feel like I didn’t belong.

The 'SPLATS Mums' 
I was lucky enough to find KIDS – a charity that provided short break respite sessions for children with additional needs.  I vividly remember bringing him in on his first day and knowing that he fitted in there.  It took some getting used to of course – accepting that my child was disabled enough to go to a group for disabled children was quite upsetting at first – but it was perfect for him and he fitted in well.  I met other parents, like me, and we bonded over the worries we had for our children; worries I couldn’t have even contemplated when I first had Sean. 

Sadly, due to government cuts, the funding for KIDS was reduced and the service they provided changed in 2013.  We went on one last outing to the farm with some of the children and parents from KIDS and we all reflected on how we’d become firm friends.  KIDS had given us a support network at a time when we needed it most.  We’d made good friends with people who understood the difficulties having a child with disabilities can bring.  We’d found a place we could belong.

I confess when the discussions about starting our own group began, I agreed and nodded, never imagining it was more than wishful thinking.  But the discussions continued way after that visit to the farm and plans started to be made.  We were all so grateful for what KIDS had given us; we were acutely aware how valuable a resource it was.  What of the other parents who, like us some two years previous, felt isolated and alone, where would they turn for friendship, advice and support?  Where would they bring their children to play and learn, where they felt accepted and valued and included?

And so S.P.L.A.T.S was born.

S.P.L.A.T.S : A place where special children can play and learn together and their parents and carers can get advice, talk and access support.

Having fun at SPLATS

We held our first fundraiser in November 2013 and were up and running in January 2014.  We’ve gone from strength to strength since then, providing support to almost 20 families so far.  Each session we provide a mixture of play based learning appropriate to the child’s developmental needs and fun sensory, messy or craft activities.  We offer a friendly and supportive ear for parents/carers and encourage friendships between the families that attend.  We’ve recently brought in external agencies to lead a fun filled singing and music session and we’ve held a group session at the local donkey sanctuary, where the children could each have a ride on the specially trained therapy donkeys. Here’s what some of our group members have to say:

“I just wanted to say what a wonderful time ... [we] ... had today.  This group is just what I needed.  Although we do attend other groups, they are mainly about ...[my son] ... and his needs and developments and it can be quite daunting/isolating.  This group allowed him to have his needs met whilst allowing me a bit of adult conversation and a cuppa.”                                             (S.P.L.A.T.S parent) 

“This group really made me feel supported and accepted”   (S.P.L.A.T.S parent) 

“Thank you for inviting us and making us feel so welcome.  You are doing an amazing thing.  Keep up the good work”                           (S.P.L.A.T.S parent) 

“I just wanted to say a huge THANKYOU!!!! We loved today, all the boys had so much fun and as always it was so lovely to speak to some other people going through the same journey as us”                                  (S.P.L.A.T.S parent)

Our aim is to reach more families and to provide more frequent sessions (we currently run once a fortnight).  We’d also like to provide family and sibling sessions and to get professionals in to give talks and offer training in relevant areas such as makaton and paediatric first aid.  Eventually we’d like to be able to offer Saturday clubs and holiday clubs too.  

Vote for us! Please :D
In order to help us achieve these aims and so that we can beginning purchasing more specialised equipment to support and include children with a whole range of disabilities we’ve been trying to access funding from various sources.  I’m delighted to say we’ve been shortlisted for the Lloyds Community Fund and face stiff competition from other worthy causes in the area. 

So this post is a ‘begging for votes’ kind of post.  We’d all really appreciate it if you could vote for SPLATS and share, share and share this post some more.

Here’s how you can vote:

By Texting: VOTE TRN to 61119

By tweeting: #COMMFUND TRN

Just please remember to confirm your vote via email.

And if you need more convincing as to why we deserve your vote, here are some of our gorgeous kids having fun at our sessions. 

Thanks everyone, I’ll let you know how we get on. :D

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