Sally's World

As you know, we have been waiting and chasing some of Deions hospital results for a while now. I am continually told that 'when there is something to tell, I shall be the first to know'...apparently not...

I rang up today to find out the results of a test Deion had in May...yes, do not adjust your screens, that was MAY! six whole months.

I demanded to speak to someone today, and with a sigh, they pulled Deions notes up on the computer...

"Oh," she said
"What???" I said, I went cold, broke out in a sweat and I think my heart stopped beating...
"Oh, well, we've had them back for a while, they were normal."

Of course, my relief that the result was normal meant I forgot to have a moan about someone actually neglecting to tell us this bit of information.

Wouldn't it be nice if just once, someone thought the parents had a right to know some vital piece of information about their child???

I guess I had better now phone up for the other four sets of results, they may be back too!!!!!

I got a phone call today, offering Deion a cancellation appointment for tomorrow...of course, I was thrilled, it hardly ever happens that you get an appointment earlier than you expect.

The woman did double check that I didn't mind coming, and repeated the date 'Friday the thirteenth.'

"Ermm, no, no problem," I said a Little confused.

It turns out that the person who cancelled, did so because of the date and the other person who has been waiting longer than us, didn't want the appointment because of the date.

I don't know about you, but this seems a bit ridiculous to me, what do some people do, sit indoors wrapped in cotton wool that day.

My view is 'superstitions only have power if you believe in them'

I don't believe in them.

But, hey, I guess, for Deion's sake, I should be glad some people do!

Thank you for all Your get well wishes and e-mails, Deion is now fully recovered from his operation. He still managed a smile for me bless him, he's made of strong stuff this one!!!

From This...


To This...


To This...

Well, Deion’s day just went from bad to worse yesterday…..his class had extra study after school, which is bad enough, but afterwards, he came out of school, and caught his foot on a wall to the left as he steered his chair right..his foot bent at a rather unnatural angle and he immediately moaned of pain. I took off the shoe…big mistake, the foot and ankle swelled and turned purple before my eyes and I loaded him into the car and went straight to accident and emergency department.

I have to say, of all my children, it’s not the one in the wheelchair you think you’ll be rushing off to A & E with a sprained ankle…

Okay, by now it was four thirty, and there was no-where to park, of course, we were caught in the ‘after school injury rush hour.’

Our local hospital hasn’t got brilliant parking, and there are only four disabled spaces…not nearly enough, especially as two of them were coned off and dug up, and the other two had cars without disabled badges parked in them…so I had no choice but to squeeze my oversized disabled vehicle into a normal car space…I hate having to do this, as it doesn’t leave much space for my parking neighbours… I invariably end up with a dented door, and also I have to pay, regardless of badge, as only disabled bays are free….and the parking cost almost warrants a bloody remortgage…

So off we go, get booked in, wait for three and a half hours for a doctor to take a look and say “Mmmmm yes it IS rather swollen”….I resisted the urge to yell ‘no shit Sherlock’ and smiled and asked what to do next….x-ray.

Okay, x-ray department fairly quiet, a mere hour wait….back to the doc…no-where to be seen….find him after storming through corridors yelling ‘helloooo, Dr ***** where are you?’ he sighs and goes off in search of x-rays, announces there is no break, but after examining offending ankle, he announces Deion has a bad sprain and a torn ligament, so… compression bandage, elevation, ice and heat, 2 days off school…thank you and goodbye….er hello, bandage…’oh right, there you go’ says Dr ***** and hands me the bandage….

Okay, I have 4 kids and some experience…but really???

No nurses were available, so I asked how tight, how high up the ankle and he watched me do it….it didn’t occur to me until we left that if he had time to instruct me, he could have bloody well done it…

We were just glad to be getting out of there. So we went back to the van that I had to park about three miles away at the other end of the hospital….

And best bit of all…there was a note on my windshield…. Note says….”you should not have parked your vehicle here; it didn’t give me much space to get in my car, kindly park with more thought and consideration in future.”

Loaded Deion in the car, made sure all doors and windows were shut…and moved a few paces away so he couldn’t hear the expletives coming from my mouth…didn’t realise man passing by until he took my arm (probably to escort me to psych ward) and asked if I was okay….red faced, I pointed to note and car…he used a few expletives of his own…glad to have someone on my side, so felt calmer, got in car and drove home.

So now have 2 days at home being a slave to youngest son….still feeling very angry with note man…thinking of putting an ad in local paper, demanding he come forward, then can stick said note right up his arse….actually I probably wouldn’t… but I’d bloody well make him eat it…

As if it is my choice to drive huge oversized disabled vehicle and I am responsible for total lack of disable parking in the whole of London!!!!

Aaarrgghhh!

A friend sent me this e-mail, it made me laugh A LOT! and it seemed perfect timing seeing as Deion is going into hospital tomorrow. I hope you enjoy it as much as we did!

Do you ever worry about the NHS at all ?

You should -These are sentences actually typed by Medical secretaries in NHS Greater Glasgow

1. The patient has no previous history of suicides.

2. Patient has left her white blood cells at another hospital.

3. Patient's medical history has been remarkably insignificant with only a 40 pound weight gain in the past three days.

4. She has no rigors or shaking chills, but her husband states she was very hot in bed last night.

5. Patient has chest pain if she lies on her left side for over a year.

6. On the second day the knee was better and on the third day it disappeared.

7.. The patient is tearful and crying constantly. She also appears to be depressed.

8. The patient has been depressed since she began seeing me in 1993.

9. Discharge status:- Alive, but without my permission.

10. Healthy appearing decrepit 69-year old male, mentally alert, but forgetful.

11. Patient had waffles for breakfast and anorexia for lunch.

12. She is numb from her toes down.

13. While in ER, she was examined, x-rated and sent home.

14. The skin was moist and dry.

15. Occasional, constant infrequent headaches.

16. Patient was alert and unresponsive.

17. Rectal examination revealed a normal size thyroid.

18. She stated that she had been constipated for most of her life until she got a divorce.

19. I saw your patient today, who is still under our care for physical therapy.

20. Both breasts are equal and reactive to light and accommodation.

21. Examination of genitalia reveals that he is circus sized.

22. The lab test indicated abnormal lover function.

23. Skin: somewhat pale, but present.

24. The pelvic exam will be done later on the floor.

25. Large brown stool ambulating in the hall.

26. Patient has two teenage children, but no other abnormalities.

27. When she fainted, her eyes rolled around the room.

28. The patient was in his usual state of good health until his airplane ran out of fuel and crashed. .
29. Between you and me, we ought to be able to get this lady pregnant.

30. She slipped on the ice and apparently her legs went in separate directions in early December.

31. Patient was seen in consultation by Dr. Smith, who felt we should sit on the abdomen and I agree.

32. The patient was to have a bowel resection. However, he took a job as a stock broker instead.

33. By the time he was admitted, his rapid heart had stopped, and he was feeling better.

The moral of this story....Stay away from hospitals !

Deion has to go into hospital tomorrow for some tests on his central nervous system. The doctors are still trying to find out why Deion is losing muscle strength, so we are off for another set of tests, maybe we’ll get some answers this time. He should only be in for a day or so.

I’m packing his bag as we speak, which seems to include rather a lot of video games and a whole rotisserie chicken for him to scoff as soon as he can eat again...he isn’t bothered about anything else!!!

So if I’m not blogging for a couple of days, it’s because I am at the hospital with Deion, or if he’s home, catering to his every need!

Back soon

Sally and Deion xxx

Well it looks like another busy week for me, the post has just arrived and in it are no less than seven appointments for Deion, I’ll have to rearrange at least one of them, unless I can figure out a way of being in two places at once!!! Haven’t managed that yet!

Thank you everyone for your e-mails and messages of support for Deion and what’s been going on. A few people are asking me what is wrong with Deion with regards to the new tests.

The simple answer is, “we don’t know.”

Deion’s elder brother passed away from a muscle wasting condition three years ago. At that time Deion was tested for similar conditions as he was also a wheelchair user and ‘vulnerable’, but nothing was picked up.

Deion’s condition was always separate from Aaron’s because Deion was a preemie and had a brain haemorrhage resulting in cerebral palsy. Yes, there were physical disabilities, but we were not expecting anything new to show up…

Well, life just isn’t that simple is it?

About 18 months ago Deion developed a squint right out of the blue. At first the doctors thought he was having small absences, so ordered tests for epilepsy…all negative. The squint got worse, and then was in both eyes, so they had to correct it.

Then he started getting headaches, so the tested for brain swelling or tumours…still negative thank goodness.

Next Deion began to have trouble chewing and swallowing. Normally Deion could reduce a man size meal to a mere smudge on a dinner plate in seconds, but he was taking half an hour or more to eat small portions, and was having to swallow six or seven times for each mouthful to get the food down. More tests, which showed the doctors that chewing was becoming unsafe, then he had some weight loss, so food supplements were prescribed and now we have to closely monitor all his food and textures.

And now Deion seems to be losing some of the use of his trunk muscles. His head is a little floppier, his legs are weaker when doing his exercises, and sitting straight is harder. So his wheelchair has lots of added support and a head rest for him.

Deion has always been incontinent, but he used to have some sensations in his lower abdomen, now he doesn’t seem to have any.

But we still don’t know why.

The doctors are testing for ‘myasthenia gravis’ (literally meaning grave muscle weakness) ‘muscular dystrophy’ and ‘mitochondrial myopathy’ (which Aaron had).

Now, we don’t particularly want any of these illnesses, but if we had a choice (I know, I know, we don’t…) but we will take the myasthenia, as it can at least be controlled and isn’t necessarily life shortening.

Now it will seem outrageous to many of you to hope for an illness, but any parent in our position will understand. There has to be a reason for the change in Deion and his abilities, so we want the reason to be as non-life threatening as possible…simple…if only.

So Deion is still undergoing tests, he is due to go back into hospital on the 17th Feb for tests on his central nervous system, and we will see what they tell us.

One thing is for sure, Deion is Deion, he’s strong and determined and whatever we have to deal with, we will…because lets face it, we have no choice. And although it feels a little de-ja-vu, we are staying positive that we are not going down the same road we did with Aaron. We have to believe Deion is here to stay, no matter what any test or doctor tells us, because to live any other way is not living, it’s waiting for something to happen…and that’s not what we do!

So thank you for your support, I know there are many, many families in our position, so I am wishing everyone of them well. I know how hard it is to stay strong, but look in your child’s eyes, see the love in them and tell me that is something that you will ever stop feeling!

Fight, fight, fight!!!

Take care

Sal xxxxx

I am just writing this blog, because I was touched today by someone’s simple act of kindness.

The day didn’t start off great; Deion had a couple of hospital appointments; we had our usual two hour wait for the first and our usual tussle over results at the second, I left knowing nothing more than I did before we went.

Then as we had an hour to spare between the hospital appointments and Deion’s Physio therapist appointment, I took Deion shopping so he could spend his birthday money.

We inevitably ended up in the game shop, because somehow he ended up with about seventy thousand pounds worth of game card vouchers (slight exaggeration!) for his birthday.

I then got his feet measured and had to hand over roughly the equivalent of our monthly shopping budget for a pair of trainers just because they were a particular brand and colour…great.

We then gave up in pound land, as the isles are too small for his wheelchair to get around, of course we had the requisite number of doors slammed in our face, the usual amount of people moaning about Deion getting in the way and of course I had expended an extraordinary amount of energy in NOT thumping at least twenty people for being so bloody rude!

So I just didn’t have the energy to argue when he asked for a MacDonald’s for lunch. He couldn’t believe his luck when I didn’t lecture him about trans fats and nitrates (yep, I’m that sad), but instead just held the door open for him to go on in.

While we were trying to fight our way through the crowds of schoolchildren (that surely should have been in school anyway) Deion got walked into, banged and scowled at about ten times. The usual really… people just don’t see him, they are only looking at eye level I guess!

Then a lady who worked there told us to go and sit down and she would get our food for us to save us queuing. This was new to me, and not something that is normal practice in MacDonald’s I believe. But we followed her to a table, she wiped it down, asked Deion what he wanted, and then went off to get his happy meal. She came back literally a few moments later, gave us the food and handed me my change.

Deion and I, dumb struck, thanked her profusely.

She told us it was her pleasure, she has a daughter in a wheelchair and knows how hard it is, but it was so refreshing, because she actually spoke to Deion instead of over him, instantly knowing the wheelchair didn’t make him stupid. She was lovely and it made a huge difference to what is normally a nightmare of pushing and shoving and ‘excuse mes’ into something quite relaxing.

I’m sure to her it was nothing more than a small act of kindness, but to us it was beyond nice, and she made Deion feel really special.

“Wasn’t she a lovely lady mum,” Deion said as we left.
“Yes she was,” I said.
“I wish more people were like her don’t you mum?”

Yes I do!

Take care

Sal & Deion xxxx

Well, I have still had no news of the results. I phoned the hospital every day last week, and also this morning, but they could still tell me nothing.

The interesting thing is, the neurologists told us that until they had the results from these tests, they could not determine the next step, they couldn’t decide on the what follow up tests were needed and so on.

So I was more than a little surprised when I got a letter in the post this afternoon from the clinical neurophysiology department at Guys hospital, asking me to take Deion for muscle and nerve tests in a couple of weeks time.

I rang the department to find out more, they were very helpful with regards to telling me what the tests entailed/sedation/consent forms e.t.c. But all they could tell me about the reason for said tests, is that they were ordered by our own neurologist based on results from Deion’s previous tests.

Wouldn’t it be wonderful if someone could phone me, or alternatively phone Deion’s GP or Community Paediatrician, so they can tell us those results? As usual, as parents, we are the last ones to find out.

I guess we are a little confused, the doctors said the tests were necessary, they said we shouldn’t wait, that he may have a treatable condition….this is why we went ahead, and this is why it feels like it matters so much to get the results and move forward.

So I guess its good news that we have our next step, I just feel as though I have no clue what is going on, and he’s my baby (although he’d kill me for saying that). Maybe I’m wrong to feel as though I have more right than anyone else on the entire planet to know what they ‘think/suspect/know’ is going on inside his body!

Its not easy for us parents to place our trust in doctors, are we expected to do this without question? Are we supposed to feel guilty for questioning their methods?…perhaps if someone could re-send a copy of the rule book with regards to what we can and can’t ask these doctors about our own children, that would be great!!! I seem to have misplaced mine.

I seem to continually annoy doctors’ by asking questions about my own children...if I ask a question about the next step…or god forbid, time scales, I get looked at as if I’ve just suggested ritual animal slaughter or told them I listen to Barry Manilow records, either way, they look at me like I’m quite mad for questioning them.

I doubt it will put me off though, unluckily for them!

Take care

Sal xxx

I got a couple of e-mails yesterday after I posted the blog about Deion’s test results. Thank you for those. I am both grateful to you for the support, and sorry that you are in a similar position.

At least I know it’s not just me I guess, I was started to get paranoid there!

It seems that keeping parents in the dark is the standard procedure. After all, we are merely the people who have to love and care for our children, we are merely the people who have to plan every aspect of their lives, their care, their schooling, their future basically.

So I guess it is understandable that we are considered the last people that need to know what, if anything is wrong with our children....

I hope you hear soon too, I’m getting to the point where I’m going to take a flask of coffee and a sleeping bag and move into the doctor’s office to get noticed!

Maybe I’ll see you there...bring cake!

Sal xxx

Well, they let us home from the hospital today, I’m a little concerned that is was more to do with the fact that Deion was constantly demanding food and chatting the ears off the nurses than that he was actually alert enough from the anaesthetic to come home.

I was up late last night packing his bag…and don’t think I’m talking about pyjamas, reading books and slippers, I’m talking about chicken drumsticks, Doritos, chocolate chip cookies, Haribo and a Satsuma…the Satsuma was for me.

Sadly, I underestimated, and in the last four hours, he still needed two hospital meals, one of the nurses lunches and a constant supply of drinks…with chipped ice if you don’t mind, not the cubed kind!

I’m not sure he was totally ‘with it’ as we left the ward and he drove his chair down to the car park. After taking out a potted plant, a chair and a doctor, I realised, he might not be fit to drive after all.

Is driving a wheelchair under the influence the same thing as drink driving, I’m not sure. It may seem less dangerous, but if you’ve ever been run over by an electric wheelchair, you know it’s no joke!

But in all seriousness, Deion was a star, he hated the starving part, but he was great when they do the blood tests and put the drip in and stuff. He had a muscle biopsy, a lumbar puncture, and an arterial blood test. All went well, and apart from feeling a bit sore, he is fine. He’s gone to bed now and I expect he’ll be using his sore back as shamelessly as he can, and we’ll all be charging around catering to his every need all weekend.

I also had to explain to Jordan, Robyn and Dave that Deion was not halucinating, as they presumed on hearing about it. And we did actually see a storm trooper in the lift at the hospital. It was a little surreal, I got a fit of the giggles, and the stormtrooper looked at me as if to say 'grow up' which made it worse. But he didn't shoot me!!! so that was okay!

We’ll be getting the test results in a week or two, so fingers crossed for good news.

And I just want to thank everyone for your messages of support. Family and friends obviously texted, phone, e-mailed and sent their love. But we also had many good luck messages from people who only know us through the blogs. So thank you, we are touched and everyone’s messages of support were much appreciated.

I need to go and get some rest now, Deion’s going to have me on my toes tomorrow.

Take care

Sally and Deion (Demon Driver) xxx

I may be neglecting the blogs a little later on this week. Deion has to go into hospital on Friday for some investigations. He developed a squint last year that the ophthalmologist repaired. But he’s also been having a bit of trouble chewing and swallowing for the last few months. And for a foodie like Deion…that’s a big disaster. So the doctors need to find out why it’s happening and if the two things are linked.

We have a couple of build up appointments, then, like I say he actually gets admitted on Friday. I will keep you posted on what goes on. I’m sure he’ll be brave, I panic a little about theses things, no matter how many times you have to do it…leaving your child in that anaesthetic room is heart wrenching. But Deion’s a total star always! Of course I have to bribe him with large quantities of his favourite things, and a DS game may be involved…

Oh yes, bribery, I’m not above it at all. Before I had kids I was very much a believer that children would behave and do well, be motivated, just because I told them so…how sadly disillusioned I was.

Of course operations are different, its only natural to spoil a child who’s in hospital…best get back to the re-mortgage forms…I think Deion’s made a rather large list this time!!!

I’ll still be blogging when I get time.

Keep well

Sal and Deion xxx

I'm quite glad the last couple of blogs have been more light hearted in nature, because this one isn't.

Since we've started these blogs I've been getting e-mails asking me about that moment when we knew we'd lost Aaron. And although I've generally been applying these blogs to the e-mails I've been recieving, this is a subject I seem to have avoided. So today I decided to bite the bullet and insert the passage out of Aaron's book which describes that moment.This isn't one for the light hearted among us, so it's completely your choice whether to read on or not.

Sal x

“I was in a perfectly good mood as I walked into Aaron’s room to get my morning cuddle; I was still humming the Postman Pat theme tune that was stuck in my head thanks to Aaron’s three o’clock viewing programming. Aaron was laying on his front asleep, I didn’t think too much of it except to say that he never normally slept on his front, I asked him what he was doing and I rolled him over.

This is an image that will be ingrained in my heart and mind for the rest of my life, Aaron was pale and his breathing shallow, he tried to look at me but he couldn’t seem to open his eyelids properly. I screamed for Dave and screamed for the phone, I dialled 999, I looked at Dave and I could see the fear in his eyes.

The lady on the end of the phone was talking to me, telling me how to do CPR, I was breathing into Aarons mouth for two breaths, then fifteen compressions on his chest, breathe again, fifteen more compressions, it could only have been two minutes but it felt like a lifetime. I thought I could feel a pulse, but it was really weak.

The ambulance people burst in and took over, they put him on the floor and were working on him. We were helpless, staying out of the way because we couldn’t do anything, they were attaching pads to his chest to shock him, they tried to intubate him but couldn’t get the tube down. It was mad, all the equipment, all the bleeping, we were all crying and telling Aaron how much we loved him, how he could do it, he was strong, not to leave us. Somewhere in the middle of it, Dave rang his brother John to come to watch the kids so we could go to the hospital.

The ambulance man picked Aaron up and carried him to the ambulance; I just numbly followed them out, because above all else, I knew that I had to be with him. They were pumping his chest and breathing for him all the way to the hospital. I think I was in a daze by then, this wasn’t real, this wasn’t what Aaron did, he was playing, he’d wake up any minute now, he just wanted a cool ride with the lights flashing.

When we got to the hospital, the back doors were flung open and we all leapt out, then they swung the stretcher and Aaron out and we all hit the pavement running.

We burst into the hospital to a waiting team of doctors, they wanted me to go to a room with a nurse, “No,” I shouted, and they knew I meant it. The doctors were shocking Aarons heart, giving him adrenalin, they were asking about time, I could do nothing but watch them try and save him, where was Dave?, I needed Dave.

Dave walked into the room and I saw Robyn walking behind him, he was saying she wouldn’t let him leave the house without her, she was like that, she had even packed Aaron a little bag, bless her heart. The nurse led Robyn away and I just collapsed in Dave’s arms, the doctors were saying there was nothing more they could do, I could hear someone screaming “NO, NO,” over and over again, then I realised that it was me!

The doctors and nurses all moved away from the bed, I grabbed Aaron and gathered him up in my arms, this couldn’t be right, he just looked like he was sleeping soundly, he was still warm, surely this wasn’t it. How was I ever going to have the strength to let him go? I just clung on to him, Dave one side, me the other, both sobbing, both feeling as helpless as each other, it was just way too awful to contemplate.

The doctors were talking, they needed to take some of Aaron’s blood and urine to help them see exactly what had happened, we said o.k. I gently laid Aaron on the bed and let them put their arms round me to guide me away from him. Then we were led off into a little room, where the nurse was already sitting with Robyn. Robyn stared at me, eyes wide, shaking her head ‘no,’ I sat down and hugged her tight, and she started screaming too. How on earth do you explain this to children, it is harder than you could ever imagine. I kept telling her what a brilliant sister she was; Aaron couldn’t have wished for a better sister.

Dave Rang John and told him to bring the children, they had to say goodbye to their big brother; we knew John would need to see him too. I think then we all just sat there in a state of shock. As we walked out of that room to go back to Aaron, John walked in to the hospital, I threw myself at him, and he was sobbing too, what would we all do without Aaron?

The kid’s looked so little and lost standing there, they had tears running down their faces, us and John too, and I hadn’t a clue what to say. Jordan just kept saying over and over how “he can’t be gone” he kept repeating how he’d only been reading a book to him the day before and couldn’t quite let it all sink in, he wasn’t the only one. Deion looked so little so frightened.”