A Slightly Happier Jude

Jude had chloral hydrate last night to settle him and had a much better night. I’ve managed to cuddle him this morning and he’s just gone off to sleep. Coffee time!

The first picture of Joe and Jude was taken last night, I’ve named this: ‘brotherly love’.

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It’s a marathon, not a sprint

It’s been a while now since I believed Jude would do anything quickly and he’s dragging his feet again getting well after his operation last Monday. It’snowhere near as bad as last year when he would stop breathing for minutes at a time but the little guy is so unahppy at the moment and being awake is a real struggle for him.

I did manage to distract him a while with some TV though…

Looks like he’ll be in for a few days yet. He’s fine one minute then the next he is screaming in pain – and he can’t tell us where it hurts, how much it hurts…..nothing. Painkillers aren’t doing a lot and I ended up sleeping with him in his bed this afternoon – at least I was sleeping.

And on the subject of marathons, how do you run just over 26 miles and look this good unless you are me???

Rachel ran the London Marathon today, finished in just under 5 hours and raising money for Brainwave. Jude loves you, thinks you are slightly crazy but says thanks…..

On The Ward

Jude was transferred to ward 9 yesterday, and it has to be said he’s kept all the staff looking after him on their toes!

His surgery went well and the surgeons are pleased with him. His pain and breath holding, however are a different matter.

Yesterday he had lots of clusters of breath holding and the pain management team are on the case. It is obvious that what we are giving him isn’t quite hitting the mark, but there us a fine line on what we can and cannot give him, as the doctor from pain management said we don’t want him back on intensive care, I agree!

I know this picture isn’t the best but as we all know my little man is a fighter! Love you Jude xxxxx

D-Day

Well today was the big day, Jude had his operation. I was convinced that when I rang the hospital this morning they’d tell me they had no beds, ……. but they did, have a bed that is. I know it was a good thing but I was so scared about today.

I just wanted to say a huge thank you to all of our friends and family for all of their support today. It’s been a tough day. Jude has been a little tinker on a few occasions demonstrating his breath holding abilities, but I think he is over the worst. The picture below was taken just before he went to surgery. And yes he did need an intensive care bed after.

Less Than A Week To Go …

Jude’s operation is scheduled for next Monday (19th) and we have his pre-op appoitment for tomorrow. Just have to hope he doesn’t come into contact with any germs before then.

He’s learnt a new trick ……. try and breath through your somehow seemingly blocked nose while asleep, get yourself all worked up, hold your breath, go a funny shade of blue, then scream, then finally breath again! He also does this when trying to go to the toilet too. I’m just hoping he doesn’t do this to ward 5 before he goes to theatre, little tinker.

Decided he needed a hair cut to look all smart for the nurses and his operation……

Ketogenic Diet

I hope I’ve spelt that correctly……. Yesterday we had an appointment at Birmingham Children’s Hospital with the ketogenic dietician.

It had already been a bit of a day with a 9.00 am appointment at a wheelchair clinic in a different hospital. A 10.10am GP’s appoitment and me finding out there was something wrong with my left pupil – it looked as though it had been dilated and was now pulling ……… probably not helped by me worrying about it after everyone I spoke with told me I must go to A&E. Even Jude’s GP was ‘concerned’ .

Anyway, I digress. This new diet is not really going to be an easy a we thought. It will be made up of lots of different components – sugar, fat, protein (I think) and other ingredients. These all come in powder format and a certain weighed measurement will be mixed together and then mixed with water to make a formula feed. From memory of my meeting I think this is called a modular feed. This way you can alter the levels of each component to suit the individual child….. easy enough hey? I very much doubt it.

We will then have the issues with constipation which I gather can be ‘not pleasant’ but the ketogenic dietician seemed positive that as Jude’s current feed doesn’t contain any fibre he shouldn’t notice too much of a difference ……. mmmmm, I think I reserve judgement on that. The dietician I saw was brilliant and spent nearly an hour with us.

Another bit if a downer is that with tube fed children the feeds have to start slow, i.e. a 20 hour feed – ooh what joy. That said I am willing to try anything to help Jude’s seizures.

We are looking at June to start the diet. Following my experiences of June 2009 I really didn’t want to spend the boys birthday’s in hospital. Poor Joe last year missed out on his party at home and had Happy Birthday sang to him in HDU with him pretending the candels were lit!

Onwards and upwards is what I say. The 19th is our next hurdle now, we just need to get through this operation.

My eye? ……… after our appointment , I went to another hospital to the eye A&E department and spent two hours with my dad and Jude in A&E. And the verdict…… I had changed Jude’s hyoscine patch that morning (in a total rush) then must have touched my eye. the drugs in the hyoscine patch are those opthamologists use to dilate people’s pupils – God what a blonde am I ? I finally got home at around 5.00pm totally shattered, with my dad who had been a total star looking after me and driving me all around Birmingham. Think we should give him ‘Best Dad’ award for all he did and does for us.