….this is pretty much how I’ve felt the last few weeks – it’s been a head down get through it time. Jude’s back in his ACTH monster phase and although perhaps not quite as bad as last time…..it’s still bad.
His feeding tube is a right pain in the posterior too. The tube from the giving set that pumps the milk needs a little plastic adapter to insert into the tube that goes into his stomach only this adapter slips out with ease. ACTH thrashing monster is more than enough to disconnect Jude from his giving set and he woke this morning about 4.30am in a rage, I crawled out of my hospital camp bed to find Jude swimming in milk.
An hour or so later after calming down the rage I reconnected him and we both drifted off to sleep together on the camp bed. I woke up in another pool of milk.
In the next few weeks the tube will be replaced by a button – can’t come soon enough!
I shifted Jude again back into his cot and he lay on his front quite content and I slipped a teddy under his arm and it looked so normal. Little baby cuddling his teddy bear – I thought at the time it would have made a nice picture for here (but no camara with me). Unfortunately it was staged but I often think Jude looks at his best when he is asleep, I sometimes wonder whether he dreams and if so do the dreams make more sense than reality…I assume so given he looks so peaceful, so composed.
The photos we take are brief snapshots and mainly consist of the highlights – and we have many of those. So what inspired me to write this morning when I’ve not been able to on so many other days.
I think it pretty much sums up what I was thinking at 6am this morning and saves me the bother of trying to put it into my words.
Even I’m getting confused now! Jude’sblood pressure medication was doubled last night and consequently his blood pressure has come down and so we’ve been allowed home:)
However, yes there’s always a however, we have to go back tomorrow as expected, but they are now talking about keeping him in until Tuesday! This is because his blood pressure usually rises the day after his injection (which is tomorrow)
Even I’m confused, and tired, well exhausted with it all. Roll on something good happening.
It seems strange to think that Jude has been in and out of hospital for nearly two months now, with a few days home, here and there. We were hoping that today would be another day we’d be able to bring Jude home for ‘home leave’. Jude’s blood pressure had other idea’s though…. Consequently his blood pressure medication has had to be doubled.
So unfortunately Jude has to now stay in all weekend and hopefully after his last injection of ACTH will be allowed home on Monday late afternoon.
I personally have had enough of hospital life, and I am sure I am not the only one. Roll on life being back to normal, well normal for us anyway. Lets hope the rest of the summer is a good and enjoyable one for the Marreys (please……….)
Well tonight the hospital have allowed us to take Jude home (just for the night) and want us back there between 9.00 & 10.00 am tomorrow morning.
It feels like there is a glimmer of normality creeping back into the Marrey household. Feels good, even if Jude has just woken up at 11.00pm and is full of the joys of spring!
Only three more injections to go, and I have to say (hoping I’m not tempting fate) that Jude hasn’t been half as grumpy on ACTH this time. 🙂
Nathan is in the school play this week, Mr Bumble in Oliver – and a fine performance he gave last night too.
So that me and Rachel could attend opening night, our friends Pete and Su offered to do some ‘baby sitting’ shifts.
Not long after I got home Pete sent us this picture…..
……with the message “Just before he vomited on me!”.
They started Jude on a high dose of ACTH this time due to his age and size and so far no ill effects. His blood pressure has risen slightly but nothing of concern and as long as the next couple of days go well he will be able to go home at the end of the week.
We were asked to keep a seizure diary, something we have never done voluntarily. Having to keep jotting down the time, type of seizure and how long it lasted reminded me why we don’t do it. A page of A4 paper was full inside 4 hours. Hopefully the ACTH will bring about an improvement.
Nathan and Joe have the chance to do some summer activities with the Young Carers group they have recently got involved in. There’s a trip to Ironbridge, a holiday on a farm and a barge weekend.
Joe, I know you will be reading this at some point. STAY ON THE BOAT, DO NOT LEAN OVER THE SIDE AND DO NOT JUMP IN THE WATER. 🙂
Well it’s 5.40 am and I’m awake with the little man, yes it’s the day we have all been dreading. So much so that I didn’t even start sorting out Jude’s bag for hospital last night, suppose that would have been admitting we were going in today.
We had a lovely day at Acorns Childrens Hospice yesterday, you see if I was Ian I would have Acorns in orange with a link to their site and would have downloaded the photographs taken, sadley I am not so the photos will have to wait. I may (in Ian’s words) be tecky girl (I’ve been kitted out with lots of new things) but now I have to learn how to use it all!
A little mention to Nath, it’s his last week at primary school 😦
I hope this week is a happy one for you Nay, and that Oliver is a success – love Mom xx
Inserted a link to the Hospice above – me and the boys had much fun banging drums, playing the guitar yesterday and Rachel joined in on the harp….
Unfortunately, Rachel turned up at the hospital this morning to find out they didn’t have a bed for Jude. Despite the fact that they had phoned on Friday to confirm he was coming in and Rachel also phoning them his morning because we were running late. Rachel’s been told that Jude will get the next available bed today. Here’s hoping someone gets better quickly and goes home!
…..is the day that Jude will go back into hospital to start his ACTH treatment. He’ll be on Ward 6 which isn’t HDU but HDU is on Ward 6 so if it ‘hurts’ at least he won’t be moving far.
He’s still doing fine, a litte grumpy at times but that’s so……….normal.