What's new with us???

Well it's been such a long time since I last blogged!! I'm now 17wks and 3 days pregnant with our second baby - 'spud'. Due date is 21st Jan - time seems to be flying by already. Wish it wouldn't tho lol!!! Bet I won't be saying that the nearer I get to 40 wks!!

Anyway, tomorrow we're taking Ryan into hospital. This time, on mon he's getting his gastrostomy done and then on tues he's getting a spinal MRI. we found out a few weeks ago that his spine has worsened by over 10deg in the last 6 months. Not good news at all, it's now at a 43 deg angle and getting worse. He's been referred to a specialist to discuss 'options'.

Worried sick about both GA's but got everything crossed he'll be fine. Hopefully he won't be in hospital for too long. 

Will update as and when I can. 

Julie x 

A little update

Well since I last blogged, things haven't really progressed that much - I don't think. Results are in from the endoscopy biopsies - it shows microscopic inflammation. We had another meeting with the gastroenterologist and a dietician. Gastro guy is quite keen to try and control reflux with medication and as Omeprazole doesnt agree with Ryan, he's on Ranitidine. His Domperidone has also been increased too. Dietician feels that Ryan is an 'ideal candidate' for the gastrostomy though - due to the length of time feeding and drinking takes as well as the amount of meds he's on now.
When he was in hospital on 12th Mar his weight was 32.2kg - 6 weeks later he was down to 29.8kg. This is what I was scared of happening - we're trying our hardest to keep him fed enough - its just so difficult!! We're due back to see them the 1st week in June (I think) and we'll see what his weight is doing then. This is something we've never had to deal with - he's always been a good eater and consistently put on weight. Nobody seems to be tracking his weight though so thats gonna be fun convincing them!! We do have copies of various discharge letters detailing his weight so we at least have those!!

Neuro also popped in during that meeting to tell us that the muscle biopsy has come back and for once - its not a 'normal' result. However, this doesn't really help any because she doesn't know what it actually means! We're waiting on another appt to see her to discuss further. One of his seizure meds has been increased again so hope it takes affect soon!!

We mentioned to her too that he's losing the ability to sit - he's never been able to sit unaided but could kinda maintain the position if held a bit KWIM?? Well for the last month or so this has gotten worse - he just falls over now. We were concerned that his spine was worsening, or he was degenerating but I think really it boils down to his weight loss - he's already severely hypotonic and I guess any weight loss will impact him quite a lot. At least, I hope to goodness that this is whats going on!!

Julie x

Gastro update

Was a really good meeting with the gastrostomy nurse!! Got a lot of information out of it, although it did raise some questions too!!

Think Craig was totally overwhelmed by it all trying his hardest to take it all in - and think of it in positive terms!!

It does look likely that, if/when we go ahead with this, Ryan will definitely need the fundoplication done at the same time. Thats the bit i'm totally dreading not so keen on. Guess thats why we still need to discuss this a lot more, especially with the gastro doc.

All in all though, a very worthwhile discussion - even if it did involve seeing a gastrostomy on a doll that wouldn't been out of place in Chuckie!!! SCARY!!!!

My fortnightly update!

Well Ryan had his endoscopy and biopsies done on Thurs. Anaesthetic went fairly smoothly although anaesthetist was flapping a bit about the sub-laxation in Ryans neck - *rolls eyes* - other than that though, was pretty straight forward.

Gastro guy came to see us afterwards, results so far show very little inflammation in his throat etc. This means that his body is dealing with the severe acidic reflux he is having but 'this is not necessarily a good thing'.............................WTF???????
Doc also witnessed the reflux happening so as you might imagine - like we did - he'd be put on medication or surgical options might've been discussed again???? Wrong..............we WAIT!!

Got to go back in 4-6 weeks to discuss results and what happens next. Its seems the medical staff doctors involved with Ryans care have the debilitating disorder of not being able to make a bloody decision without discussing it with a thousand other people who know nothing about Ryan!!!

Anyway, tonight we've got a Nutritionist Nurse coming to the house on her way home from work - hows that for service - to explain gastrostomy procedures etc to us. This should be really helpful - we're getting a bit worried that we're gonna be left with the decision regarding going ahead with this for Ryan. He aspirated last week and it was completely terrifying - I couldn't cope with that happening all the time.

Wish us luck for an informative meeting tonight!!
Julie x

Where does the time go??!!

Been ages since I was last here - things been busy I guess.................cant really actually think of anything I've been doing that makes it busy but, hey, must've been doing something.........right???

Ryans seizures are the pits just now - his night-time breathing is also atrocious. We're trying to figure out how to adapt a sleep system - coz his spine is not great - that allows him to sleep sitting up or lying on his side..............supposedly the best positions for 'good breathing'!!!

Sooooooooooooo not the best positions for us to be allowed to sleep at night!!!

Just don't know what more we can do, we're now up to him at least twice a night to change his position or nappy - coz this boy can pee for Scotland - I'm shattered.........................

Add into that, trying to sleep whilst listening to horrible obstructive breathing or the dreaded noises of a seizure - but hey, who needs sleep eh????

MMMMMMMMMMMEEEEEEEEEEEEEEEEEEE!!!!!!!!!!!!!!!!!!!!!!

The school doc is hopeful she can arrange some sort of multi-disciplinary meeting with all the experts involved in Ryans care. Not holding out much hope for success - each one either says 'its not their area of expertise' or says 'nothing more they can do'. Its totally carp being told 'yep there is a problem but we're not really gonna do anything about it'.

OK, I know they don't quite word it like that but its how it feels sometimes!! We also asked her to tell his neuro that he's started with his full-body thrashy type seizures again. This was last Tues and so far - nowt from anyone!! Its OK though, I'm sure its much more important that they can go home and sleep soundly at night...................sigh!!!!

On Thurs this week we're also in hossie for Ryan to get the endoscopy and biopsies done. Another GA - fun - gotta love 'em!!!

Right, that's enough moaning for now - that must be about 2 weeks worth LOL!!

Julie x