.jpg)
Posts
Showing posts with label hospitals. Show all posts
remember me???
Wednesday, 3 February 2010
Hello, remember me? I'm that person that used to blog every day, catch up with all your blogs and offer some sort of support (I hope).
For the first time in what seems like forever, I have accosted Dave's computer and have a few moments to catch up and let you know whats going on in our insane lives...
I'm working ridiculous night-time hours, which seems ideal for an insomniac...but I'm not sure when I am supposed to catch up.
Deion is finally getting his botox in his thigh muscles, this should ease the pain until his operation to put his knee caps back down in the right place... where the thigh muscles are tight, all the exercises he has to do are pulling the kneecaps up, rather than stretching the thigh muscle...ouch!
Deion has had some special tests to see how the swallowing is going, his swallow is now unsafe with bread/cakes, anything of that consistency as the tongue is not holding his food in his mouth, so it slips down and he aspirates...hence all the chest infections.
Also plain fluid goes down too fast with the same results...so he has to have thickened drinks.
The doctors are talking about giving him a gastosteomy feeding tube so he can have enough fluid and calories safely...although this terrifies me because its all a bit "de-ja-vu" I am obviously happy to do whats best for Deion. Deion however is refusing, because the only person he knew with a gastro tube was Aaron and no matter how much we are trying to reassure him its different, he is scared. He also, very intelligently pointed out that we wouldn't tell him if he had an illness like Aaron's anyway...which is probably true, not sure how to reassure him really, and that kills me.
We get Deion's neurology results on the 10th Feb...so wish us luck.
I am feeling a little under appreciated to be honest, this may seem selfish and shallow compared to Deions dilemmas... I wonder why everything I do goes unnoticed, yet I am supposed to celebrate everyone elses achievements with gusto... I don't really know how to keep up with all the housework, cooking, cleaning, appointments and work these stupid late night hours. Of course, everyone still expects dinner on the table, dry cleaning collected, food in the cupboards and ironed clothes!!!!
Maybe I can arrange for the fairies to come in and do it while everyone is asleep...well, everyone except me of course, because I shall either be sitting in a police station somewhere asking a twelve year old why he thinks its okay to be stealing cars at 2 am/thumping his mum/carrying knives/smoking cannabis...or else I'll be trying to catch up with the bloody ironing!!!
Enough about me!!!
Jordan and Robyn have just had a few weeks of intense studying and exams, I think they have come through it relatively unscathed, if somewhat tired....mind you, now they have less study...maybe they can help out more round the house....sorry....just a thought!
Deion had his first secondary school report....8 distinctions, 6 merits...way to go Deion...a total star, that's gonna cost us!!!
We were snowed in for Robyn's parent teacher meeting...but she was so keen for me to see her teacher and be impressed that we trudged about four miles through the snow, met with the teacher for about 5 minutes...because of course he has no worries and thinks Robyn's a star, then we trudged four miles home....tell me again why I couldn't have that conversation on the phone???
Jordan and I seem to be bickering a bit at the moment, I guess its because he is in that in-between stage, he thinks he knows it all and is a grown man at the ripe old age of 16... "I'll be able to drive next year you know mum"... (that'll keep me off the roads anyway!)... and I still think he's my little boy... I must learn how to let go. I just see so much scary stuff out there, its not that easy.
The house is slowly getting sorted, we are 'nearly there' on most things... bit of tiling, bit of painting, a few shelves to put up...we'll get there, I'm just glad to be in and that everyone has their own space.
Okay, I suppose I'd better go, I'm not sure when I shall get a minute to get back on the PC.
Thanks for your e-mails and comments checking I'm OK, I really appreciate it,
Love you all
Sal xxxxx
tests, tests and more tests
Tuesday, 27 October 2009
Poor old Deion's going through it at the moment.
I have written posts about the uncertainty surrounding Deion's condition before, and the reason I haven't spoken about it for a while, is simply because there has been nothing new to tell, no new news, no results. It's a bit like having something hanging over us, actually, its exactly that.
So our lovely, lovely consultant has been pulling some strings to get some stuff done. It means that Deion is going to be spending most of his half term back and forth to hospital appointments, but I'm sure he'll think of a way to compensate this hardship...its gonna cost me i just know it!
Deion had his hip and knee x-ray on Friday, as he is in some pain, we need to know why. We have a full physio assessment today, later this week, we have a meeting about botox to loosen his thigh muscles, a neurology appointment to discus a muscle biopsy, some investigations about the deterioration in his swallowing, and we need to figure out how to get two litres of fluid a day into a child that cannot swallow liquid effectively any longer.
What fun!
I know I'm not ready for a couple of the suggestions they are going to make about Deion's swallowing, they are not happy that we have to get so many calories into Deion, and maintaining is weight is harder all the time.
Hopefully we will get some answers this time. I have to remind myself that deion is tougher than I think. Whatever happens, I know he/we can deal with it.
I have written posts about the uncertainty surrounding Deion's condition before, and the reason I haven't spoken about it for a while, is simply because there has been nothing new to tell, no new news, no results. It's a bit like having something hanging over us, actually, its exactly that.
So our lovely, lovely consultant has been pulling some strings to get some stuff done. It means that Deion is going to be spending most of his half term back and forth to hospital appointments, but I'm sure he'll think of a way to compensate this hardship...its gonna cost me i just know it!
Deion had his hip and knee x-ray on Friday, as he is in some pain, we need to know why. We have a full physio assessment today, later this week, we have a meeting about botox to loosen his thigh muscles, a neurology appointment to discus a muscle biopsy, some investigations about the deterioration in his swallowing, and we need to figure out how to get two litres of fluid a day into a child that cannot swallow liquid effectively any longer.
What fun!
I know I'm not ready for a couple of the suggestions they are going to make about Deion's swallowing, they are not happy that we have to get so many calories into Deion, and maintaining is weight is harder all the time.
Hopefully we will get some answers this time. I have to remind myself that deion is tougher than I think. Whatever happens, I know he/we can deal with it.
hospital parking ggrrrrr!
Friday, 23 October 2009
I have a huge complaint (just for a change!)
There not only needs to be far more parking at hospitals, but there needs to be more disabled spaces, and we should not have to pay extortionate amounts of money for using them.
Deion had to go and have his hips and knees x-rayed as he is getting some pain, not that uncommon for wheelchair users, but we need to check it out.
So we merrily went off to the hospital. It took us over half an hour to park, and no! not because I can't drive/park e.t.c but because there was just no room. This was at ten to nine this morning, so you'd think it would still be fairly quiet...nope!
There should be more larger spaces to accommodate wider vehicles so we have enough space so that we can open the door more than an inch and a half. And there certainly not be ridiculously low height restrictions so that anything higher than a go kart can't get under (of course the docs sports cars can all fit under rather nicely)...disabled vehicles are big you guys...think it through.
So off we go to our appointment, which really should have been quick, but we waited the obligatory hour and a half to go in. Although how they could possibly be running an hour and a half late at nine twenty, when the x-ray department only opens at nine is beyond me... obviously we have a bit of lifting on and off the bed to do for Deion, no such thing as a hoist in a hospital x-ray room, that would make waaay too much sense!
So two hours and two minutes later I went back to the car, put my ticket in the machine and oh, guess what, its three pounds an hour to park, but I had to pay nine pounds because I went two minutes over the hour....fair...NO!!!
Of course, my inability to keep my mouth shut about such matters meant I was duty bound to make a complaint to the parking control officer. He agreed with me totally (which I hated because I could hardly shout at the man for being nice and agreeing with me now could I???) and he gave me a form to fill in and send off to make a complaint. Which, yes, I will do, even though I know it will do absolutely nothing. And I know this because I have already filled in about seven of these forms before.
There not only needs to be far more parking at hospitals, but there needs to be more disabled spaces, and we should not have to pay extortionate amounts of money for using them.
Deion had to go and have his hips and knees x-rayed as he is getting some pain, not that uncommon for wheelchair users, but we need to check it out.
So we merrily went off to the hospital. It took us over half an hour to park, and no! not because I can't drive/park e.t.c but because there was just no room. This was at ten to nine this morning, so you'd think it would still be fairly quiet...nope!
There should be more larger spaces to accommodate wider vehicles so we have enough space so that we can open the door more than an inch and a half. And there certainly not be ridiculously low height restrictions so that anything higher than a go kart can't get under (of course the docs sports cars can all fit under rather nicely)...disabled vehicles are big you guys...think it through.
So off we go to our appointment, which really should have been quick, but we waited the obligatory hour and a half to go in. Although how they could possibly be running an hour and a half late at nine twenty, when the x-ray department only opens at nine is beyond me... obviously we have a bit of lifting on and off the bed to do for Deion, no such thing as a hoist in a hospital x-ray room, that would make waaay too much sense!
So two hours and two minutes later I went back to the car, put my ticket in the machine and oh, guess what, its three pounds an hour to park, but I had to pay nine pounds because I went two minutes over the hour....fair...NO!!!
Of course, my inability to keep my mouth shut about such matters meant I was duty bound to make a complaint to the parking control officer. He agreed with me totally (which I hated because I could hardly shout at the man for being nice and agreeing with me now could I???) and he gave me a form to fill in and send off to make a complaint. Which, yes, I will do, even though I know it will do absolutely nothing. And I know this because I have already filled in about seven of these forms before.
I'll Be Back
Thursday, 13 August 2009
Goodness, me, sorry for my absence from my own and your blogs this last week, we had a bit of an emergency!
Poor old Deion seems to be going through it at the moment, he complained of a tummy ache last week Thursday, and being the (often criticized) over protective mother that I am, I took him straight to our family doctor, who sent us straight to the hospital to be checked over, they took some bloods, diagnosed appendicitis, admitted him and got him to theatre...the appendix had perforated and leaked, so he was on IV anti-biotics for five days,threw up when they tried to get him eating and couldn't poop....so we didn't get home until today.
We are glad to be home, he is feeling pretty good now, but between the laryngitis, then the swine flu, then the appendicitis, he must be waiting to see what happens next. Amazingly, hes still smiling, what a star.
I need to catch my breath and I'll get back on the blog. I have some posts to catch up on!
Also I think I need a good chiropractor, the fold down bed I slept on (attempted to sleep on) next to Deion's bed for the last week has left me feeling like a ninety year old woman with arthritis!
All in all its been a bit scary and left me feeling a bit shell shocked, I'm doing my usual thing of sticking a smile on it, and getting on with it, but its got me realising once again how fragile life is. And just how terrified I am that something will happen to another one of my children.
Back soon
Sal xxxx
For sale... 11 year old boy, one careful owner....
Thursday, 23 April 2009
Cute smile, cheeky face, very affectionate, works hard at school...only catch...has BIG mouth and NO volume control....
Yep, its official, any takers, I'm done, Deion has mortally embarrassed me for the last time...
He had a hospital appointment yesterday, ENT...local (unfortunately) packed waiting room (even more unfortunately).
About an hour into our wait, Deion, out of the blue...pipes up..."Mum, did you have a bad dream last night"
"No, Dee, why do you ask?"
Stupid, stupid, stupid me for asking!!!
"Cos I heard you moaning"
You know where this is going don't you???
I am well aware at this point that the whole waiting room and all the staff, receptionist and the man delivering mail is listening intently.
"Shh, Dee, we'll talk later."
"Why?"
"Because I said so."
"Okay, I was just asking, cos I heard you laugh, then you moaned, and I think you accidental hit daddy too, cos he moaned..."
I am DYING at this point!
I am vaguely aware of Deion giving me my own tried and tested advice on how to deal with bad dreams, but I can't listen as I am too busy trying to crawl under my chair...
Note to self...soundproof bedroom...scrap that...separate bedrooms, may as well, cos I can guarantee Dave is NOT coming ANYWHERE near me until the children have all left home!!!
Also, find another doctor...hospital...how easy is it to move out of the area completely???
SAY no evil, hear no evil…..
Wednesday, 18 March 2009
Its been one of those mornings….I know some of you are new to my life…so you may or may not be aware of the fact that Deion is going through some tests at the moment. He seems to be losing some muscle tone, developing squints and having trouble swallowing. So he is undergoing all sorts of investigations…Deion had an appointment today at our local hospital. He visits four different hospitals, but we were local today.
Now I often moan about how the system works with regards to appointments. This particular clinic schedules appointments three minutes
apart…I kid you not…ridiculous really, by the time Deion drives in the room in his electric wheelchair, takes out a couple of potted plants and a table leg…our time is up. So needless to say, the clinic always runs late and although our appointment was at nine minutes past nine, the clinic was already running about six hours late by then…(you do know I tend to exaggerate by now right?)Now, Deion has been going through this for a while, and all the consultants at all the hospitals have his detailed notes….so I am under the mistaken notion that they should vaguely know Deion, his history, our family history ever so slightly. Some of these consultants were even Aaron’s consultants too.
In the beginning, I expected to have to talk to these consultants a few times and ask them to be careful about what they say. Of course, while most eleven
year olds wouldn’t have a clue about muscular dystrophy, progressive neuromuscular and life curtailing illnesses… Deion does, because its all the same doctors, the same words, the same tests and same fears as when Aaron had to go through it.So I have asked them to be careful what they say in front of him. Deion is fine as long as he knows what’s going on, as long as he is told they are just ruling out, looking at and don’t bandy around these awful words in front of him, he can cope.
It breaks my heart to see his little face drop when they talk about mitochondrial cells not performing…and to be fair to the docs…what eleven year old should understand this???? Well!! Deion does unfortunately. And no matter what I say, or explain, they won’t stop saying these things in front of him.
I’m not sure what to do.
Last time Deion got really upset, so this time I stepped in the room before Deion, and pre warned the consultant about Deion’s understanding of the terminology. She looked at her watch twice, obviously the three minute appointment did not allow for a mum’s pre consultation, but undeterred I went on and took up those three precious minutes.So in comes Deion, he’s a little nervous I can tell, because he’s driving is a little erratically… he ran over my toe, crashed into a chair and killed a small side table. He parked in front of the doctor, I sat in the chair next to him and she asked him how he was...so far so good.
And also, at Deion’s insistence he was wearing his T-shirt that says “if you can’t say anything nice…don’t say anything at all.” We thought this would have gotten the message across….
Then she turned to me and said, “There’s definitely something neuromuscular going on, we need to see if it’s progressive and how aggressive it is, at this point a full muscle biopsy to get an accurate prognosis is essential.”
For the love of god….did she hear nothing I said.
I resisted the urge to kick her under the desk, but she must have clocked the look on my face because she went silent and then said “oh,” very quietly.
I spent the next ten minutes explaining to Deion that nothing is certain and we are just right now trying to find out why things are harder for him now…every now and then I turned to the doctor as if she was five years old and said, “isn’t that right doctor,” to which she nodded and smiled.
She's lucky Deion wasn't in Yellow Lightning mode...he would have zapped her!I know it is hard for docs, I know they are under pressure, and on time scales that are nothing less than ridiculous. But I was so clear….
Is it me? Am I trying to protect him too much? But we don’t know anything yet, and we are sooo trying to be positive that the news won’t be bad, so shouldn’t we be ignoring all those words to a certain degree? Or is it just burying our heads in the sand?
The thing is, we were accused of doing that with Aaron, but we felt that if we stayed positive and fought, he would too…and he had seven and a half years when they gave him six months…so how can it be wrong?…there may be no connection, but we think there is…..
Well, Deion got rewarded with a detour on the way back to school and a yummy extra breakfast, all the while we made up really crap jokes like...'what do you call someone who totally ignores everything you say?'...' a consultant' cue raucous laughter from us and puzzled looks from fellow diners! and he went into school cheered up, giggling and pleased to have a secret that we’d played truant for an hour! I’m sure there will be more questions tonight, so I guess I’ll just do what I do and make sure he feels safe now!And I’m very proud of myself, I didn’t cry until I was safely indoors, and only threw two plates….
Big sigh!
