Back home and a new diagnosis

Jude’s back home but a day late. They wanted to get the outcome of his recent sleep study and……Obstructive Sleep Apnea. It is, we’re told, mild. Errr, and that’s pretty much all we’ve been told. Thankfully, wikipedia stepped in. Possibly due to enlarged tonsils and/or adenoids, possibly due to his muscle tone, maybe both, maybe neither – I guess we’ll find out at the next appointment.

Jude’s keto diet means that all his old medications are gone and replaced with tablets that have to be crushed and dissolved, all of which could block up the tube. Much more complicated now.

His Ketones are still on the low side – they need to be hitting between 4 and 5 and so far they’ve been below 2, usually below 1. I guess there will still need to be tweaks to his diet. Matthew’s Friends is a decent site for information on the Ketogenic diet.

He’s home, he’s happy and so are we.

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Jude’s coming home

After a fairly uneventful stay in hospital, Jude will be back home on Wednesday with his new ketogenic diet in place and apart from the fact that he’s taken to sleeping a lot no apparent adverse side effects.

His ketone levels, which need to be between 4 and 5, are hanging around the 1 to 2 level which won’t have any impact on his seizures but they are expecting it to go up in the next few days and weeks. We shall see.

I met a little boy in hospital on Monday night, he had been moved into the bed opposite Jude. I tend not to ask questions of other parents – mainly in case they ask back…but in this case I saw things in little baby Mikey (not sure of the spelling) that took me back and I took the plunge and spoke to dad who confirmed what I thought – West Syndrome or Infantile Spasms. As we talked it was soon apparent that our two little boys shared a remarkably similar set of symptoms which is probably the reason I ‘knew’ as soon as I saw him.

His dad might be reading this blog (Hi!), it got me thinking about how far Jude has come in the last 2 years – perhaps things that I don’t realise in the midst of all the things we deal with. I was never sure what my aspirations for Jude were, I was hoping for the best without ever knowing what the best was. I wanted a relationship with my son, for him to know me, communicate with me, feel safe with me…I think we got there and some more.

Mikey, his mom and dad and their two older boys (more coincidences) are setting out on a journey of hospital appointments, therapists, drugs, eegs, good days and bad days but if they have even half the good stuff we’ve had they will be blessed – I wish them all that and a whole lot more.

It reminds me why I started this thing in the first place – I blog so that I don’t have to talk to people. It is my social isolation from ‘the story’. That question – “What’s wrong with your son?” Do you want the truth, the abridged version or the sugar coated one? I was on the phone trying to arrange some travel insurance and Jude’s condition needed to be disclosed. They asked ‘that question’ and I am so unused to answering it my mind went blank. After uttering a few things and answering a few questions they said I wouldn’t have to pay any additional premium so I snapped their hands off. I’m wondering what I told them now.

Having posted a picture of our (hopefully) new house nothing bad has happened and the move is still on so it might be safe to post a couple of more pictures.

The first is Jude’s room. I’m thinking of making an offer for the pool table 🙂

It’s a wonderfully ‘bright room’ but what we really liked are the doors that lead out to…..

We’ll have to sort out a ramp to get down to the garden but it just seemed so perfect that Jude will be able to leave his bedroom and be greeted by this.

Saturday June 22nd 1996 England beat Spain on penalties on the way to the semi-finals of the European Championships. Sunday June 23rd 1996 me and Rachel got married.

Wednesday June 23rd 2010, England need to beat Slovenia to reach the knockout stage of the World Cup and me and Rachel will be celebrating 14 years, 3 kids and a cat of a marriage. Happy Anniversary Fahy.

Needles and Pin and Tubes and Things

Jude’s 2 1/2 and in those 30 odd months of his life we have shoved tubes down his nose to feed him, sucked stuff from his throat, had a tube inserted into his stomach (twice) and now we have to stick a needle in his finger to make him bleed so we can test his ketones and blood sugar levels.

I’ve never really had a problem with needles, indeed when I was nursing I would regularly inject patients – usually in their buttock. I had a system, a hybrid of what I was taught and what I introduced to the technique myself. Pull skin, plunge needle into skin, inject, withdraw. I just added….and close my eyes. I never actually saw the needle enter the body, I felt it enter my thumb once or twice but that was just an occupational hazard.

But Jude now has this little, teeny weeny needle that pops out at great speed and creates the smallest amount of blood and he doesn’t even flinch when we do it and I thought to myself…..I wonder if it hurts. So I sat there with this spring loaded needle contraption pressed against my finger with my thumb hovering over the trigger. And I couldn’t do it. Shame.

I’ve never thought about shoving a tube up my nose and down my throat and imbibing a nice vintage port, nor have I considered using a suction tube to rid myself of unwanted secretions and never have I wondered whether I should surgically implant a feeding tube in my stomach so why, out of the blue, I should sit there with a loaded needle wondering whether I should pull the trigger I do not know? At least my only witness was my son…..and he loves me enough not to say anything.

Ketogenic Diet

Jude is back in the Children’s Hospital, looking for the magic bullet. After trying and failing with various combinations of drugs to control his seizures we are now having a go at the Ketogenic Diet.

After so many false hopes we aren’t looking for a miracle… just hoping for one. It’s a strange time in hospital – Jude is healthy and well. We’re not quite sure what to do. So far (3 days in) he is tolerating the diet, no adverse reactions noted. It will be a few days yet before his ketone levels are the right numbers and even then we may not know how effective it will be but given the success rate of the diet in hard to treat epilepsy we want to give it every chance.

There’s other news too – we may well be moving house this summer. We’ve had an offer on our house and we have had an  offer accepted on a house.

This is the rear view of the house, the extension on the left will be Jude’s room and the garden will be Rachel’s. Apparently the blue sky and whispy clouds weren’t photoshopped.

It’s getting quite important for us to move, Jude at 2 1/2 is more the size of a 4 or 5 year old and his lack of mobility is putting a strain on our middle aged bones. Later this year we should also be getting an adapted car so we can wheel his pushchair straight into the car.

Coast to Coast Update

My friend Chris (and hus mate) have walked just over 20 miles yesterday, they got to the place they were camping for their planned evening meal food and just as they were shutting the doors, a couple of locals saw them and offered to drive them 2 miles down the hill to a pub for food. I’ve spoken to Chris’ wife who said it’s been a bit hard going as the weather hasn’t been the best. One of the locals an airline pilot gave them £10.00 sponsorship for Acorns. Chris and Andy were both very touched by their kindness and support.

They were wild camping last night the sun had been out all day so there is renewed spring in their step.

I know it’s rude but if all my friends just gave £1.00 to just giving it would help. (The link is at the top ofJude’s blog) N.B. This is where Ian would say, “yeh Fahy you’d raise about £3.00! (forever the wit).

If you can, please help. Acorns is such an amazing place and I feel so lucky to be involved with them. Thanks xxxx

Jude’s first World Cup

Hi it’s Nathan, Jude’s big big brother here and it’s Jude’s first World Cup and I know it’s going to be a good one. Today we are all going to my Uncle Pete’s house to have an American styled BBQ and watch England play againts U.S.A. (My match prediction is England 3, U.S.A 1). I think this picture of Jude will get everyone in the football spirit. (This is my first ever post).

Back In ………

Hospital

Well on Monday we will be back in hospital. Jude is being admitted to start his ketogenic diet. He will be observed for the first day, to look at his seizure patterns. God I hope they’ve pleanty of paper-he’s having loads of them at the moment. We feel the topirimate isn’t doing what it should. Day two…. they start the diet with 20 hour feeds, talk about restrictive!

I think we’ll need all the luck everyone can give us. I think it’s meant to be quite a rocky ride when you start this diet, but I’m told the results can be very good.

So, not much on then this summer, Jude’s new diet, Joe’s birthday and ooh a little insignificant thing of moving house. I’m grey already, heaven only knows what I’ll be like by the time autumn comes.