Back Home – Again

There’s a song by Half Man Half Biscuit – they were nearly big once upon a time – The Light At The End Of The Tunnel (Is The Light Of An Oncoming Train).  The words of the song don’t really describe what’s going on at the moment but I think the sentiment rings true. Every time we think we’re getting back on track, the light at the end of the tunnel doesn’t turn out to be quite as welcoming as we’d hoped.

Jude was back in hospital last Wednesday after spending a day arching his back and crying continuously. He wasn’t eating properly and it turns out he did have a chest infection. There was talk about him having fits, I wasn’t accepting that, I still don’t accept it and I am pretty sure I’m right. He’s been taken off the sedative drug chloral hydrate and this has been replaced with Diazepam and he’s also been on some antiobitics for the chest infection. So, the current list of drugs is….

Prednisolone, Vigabatrin (on a slowly reducing dose), Diazepam, Ranitidine, Gaviscon and if really required chloral hydrate. The diazepam seems to have had a beneficial effect, Jude is much calmer now and the consultant has strongly suggested that his repeated arching and screaming may be a little bit of attention seeking – Jude has always been comforted and it makes sense that if he is in discomfort he is going to use his skills to his advantage. This makes a lot of sense to me.

Whatever has been going on, the outcome is clear – Jude has taken many steps backwards in his development in pursuit of medical progress. While his EEG may have improved, it has come at a cost and we feel that in many ways we are starting again, but always wary of that oncoming train!

Jude was awake for nearly 12 hours straight today – he had a few short naps along the way but it is much different from a few days ago when he would only be awake for a short period of time, anything longer tended to be accompanied by loads of distress for baby and parents. Not only was Jude awake for all this time, he was also relatively calm with only brief moments of crying. (There’s that light at the end of the tunnel we need to be wary of).

Jude’s eye contact is improving, his feeding is improving and he’s taken a liking to lying on his stomach – a tip I got from one of the posters on the Infantile Spasms e-mail group and because this is one of the things you must not do to your baby we had never really thought about it, the rules don’t always apply in these circumstances. Another suggestion from the e-mail group, which is aimed at improving eye contact, was to stick pictures of us on Jude’s cot so he gets use to looking at our faces. I have no idea if it will work but couldn’t see a downside until someone mentioned the possibility of it causing nightmares! Ha, ha.

And so we’re all back home again, a family once again.

Here’s Jude in a pose that pretty much sums up how he was feeling last week….

On the Rollercoaster

Rachel, Jude’s mom, hasn’t got around to becoming a fully fledged poster on Jude’s blog yet – probably because we haven’t spent enough time together yet so I can show her how to log in etc. Anyhow, Rachel added a comment to one of my earlier posts and I thought it might get missed so I’m going to add it as a post in it’s own right.

My son asks if he can go on a rollercoaster, while I just feel I am already on one. It has to be said that it is an incredibly long fairground ride that we are on at the moment, and I am sure it will last for a long time to come. There are good and bad days, which I know are to be expected. The good ones are great and the bad ones are helped by the love and support of all the people who care for us. They also carry my motto “the only way is up” Jude is an incredibly special person who is loved by many people.

Never Mind – It’s Christmas

Apparently Jude had an unsettled night and he’s now on Diazepam and antibiotics (might have a chest infection, they’re doing an x-ray). We just had a delivery of the feeding set for his NG tube and our hall way is now full of cardboard boxes. At least it will keep the boys happy when I tell them that they are early Christmas presents – imagine their delight when they find out it’s a whole load of tubes!!!

Last night when I got to the hospital the doctor on duty was saying Jude was having a fit, this then changed to having a spasm, then back to having a fit. I wasn’t accepting such a quick diagnosis and thankfully the consultant agreed this morning – I wasn’t there but I guess my comments were relayed back to her. I think if we were told that Jude was having fits it would feel like such a massive backward step that I don’t want anyone to say it unless they can back it up.

Must express my appreciation to the Jude Marrey Stalkers Association – thanks, it helps. A lot.

Night out in London

Daddy’s down in London tonight in advance of a meeting in the morning – my cosmopolitan lifestyle will see me sitting in a cheap hotel room, watching TV, drinking coffee and nipping out for a Subway. Mommy will be juggling with feeds, drugs, kids, Coronation Street and the cat. If you get to read this Fahy – love you, don’t worry about me, I’m fine 😉

Jude continues to do well with his feeding, he is finishing some of his feeds himself – I was most upset that my sister and not me was the first to get him to finish a feed so I have promised myself that I will be the first one to get him having a Chicken Tikka Balti and a pint of lager.

Jude has also had his last dose of ACTH today and will be starting on Prednisilone from tomorrow on a gradually reducing dose over the next 4 weeks.  It’s a new chapter and we’re not entirely sure whether to expect further improvement in his disposition, whether he will stay pretty much the same or if we are going to be hit by something completely new.

Jude’s brother Joseph has also been to the Children’s Hospital today to have his annual check on his heart. Earlier in this blog I explained that Joe was born with a coarctation of the aorta and a hole in his heart. Thankfully the coarctation was repaired by surgery when he was about 6 months old and it has caused him no problems since (he’s 8 in June). His first (and probably only) question to the doctor was…”Can I go on a rollercoaster?” That is what I call perspective.

What Price a Life?

For many years I have held fairly fixed opinions about capitalism, the pursuit of profit as a means of advancement – it is an ideology that I find objectionable but I understand that it is dominant in the society I live in. With controls, the worst excesses of that ideology are mitigated but there is no doubt that when we experience those excesses the true nature of that relentless pursuit of profit is stark.

In the UK the NHS is often criticised as a bureaucratic throwback that is inconsistent with the free market. However, health care that is (mostly) free at the point of delivery for all. There are charges but they are generally affordable.

The situation elsewhere however is not the same, in the US the cost of on vial of ACTH is currently $40,000 per vial. By the time Jude has finished his course of treatment he will have had 7 vials of ACTH – in UK pounds that is equivalent to just over £140,000. There is no guarantee that ACTH will be successful.

If the measure of a society is how well they look after their most vulnerable I wonder just how vulnerable the shareholders of Questcor must be.

New York Times story

Campaign in the US

Trevor’s blog

On a positive note, Jude is starting to come round a little bit – his discomfort is a little less and he is really trying hard to feed himself as much as possible. He will be having his last does of ACTH on Monday and hopefully there will be more signs of improvement.

Back Home

The staff on the shift today offered to keep Jude overnight so we could go home and have a bottle of wine or something. Rachel had some wine but I’m too tired….

Anyway, we made it back with our drugs haul – Vigabatrin, Prednisolone, Ranitidine, Gaviscon, Chloral Hydrate – and his machine for feeding through the NG tube. Jude is offered the bottle and whatever is left gets pumped directly into his stomach along with his cocktail of drugs. He’s having 3-4 ozs (85 – 110mls) of his feed, about half, which isn’t bad.

We had a record number of hits on the site today – 120. It really helps to know that there are so many people out there rooting for him, especially those who are facing similar challenges to ourselves – their support based on nothing more than a common bond is quite inspiring.

Some time ago, I posted the words to a Billy Bragg song You Make Me Brave – its a song on his new album which comes in two formats, Billy with a band and second CD with just Billy.

There’s a few things to know about Billy, he can’t sing and…..well that probably says it all. But I like him and he writes some beautiful songs. On his website he has put up videos of him doing the album acoustically and You Make Me Brave is up there in all its errrrrr glory.

It is terrible, it is really really bad, the band version is so much better – but if you want to see Billy in action murdering this beautiful song (it is his to murder after all) then go here. There is a snippet of the proper version here.