Sally's World

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

Poor old Deion seems to be having more than his fare share at the moment. He's been ill over the weekend, today the doctor confirmed he has Swine flu.

I am run ragged, knackered, I need a shower, some clean clothes and a hairbrush, its a good job I'm too tired to see straight, the sight of myself in a mirror may push me over the edge.

In my house, we don't really do sympathy, we do affectionate teasing so we are all doing our best to keep Deion cheered up and smiling.

This involves:

a) Frantically oinking and squeeling at him at regular intervals and asking if he can understand us,
b) Frequently checking for a curly tail,
c) Intermitently showing him pictures of Miss Piggy and asking him if he fancies her yet.
d) Asking if he needs help if holding his drink is hard with trotters.
e) Whenever he farts, asking if he can smell bacon.

Strange as it seems to all you functional families out there...but this is what he needs.

I'll blog when I can, in between the symptoms (believe me, you DON'T need details)

sal xxxx

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 !

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 really thought we had it sorted. I thought that today, the results would be in my hand and we would be planning the next step…But once again, I was wrong.

Deion had several appointments yesterday, it was an afternoon of it, we went down to the chid development centre with an extra large picnic hamper and some books and a pack of cards, and just camped out.

First he had his multi disciplinary with his paediatrician. This is an hour long appointment where we talk about all aspects of Deion’s care, weight, height, discus any changes and so on. Obviously the lack of results after Deion’s tests came up and the doctor made a phone call then and there (excellent) he was told he’d get a ring back.

The doctor knew we would be in the building for a couple of hours, so he was going to come and find us when he knew more.

Then we saw the community nursing team, discussed Deion’s pads e.t.c

Then we saw the speech and language therapist…not that Deion has problems with his speech…far from it, but she is also the person that deals with the problems Deion has with chewing and swallowing his food and drink.

Then we saw the dietician where we have to go through Deion’s food and drink and make sure he’s getting a balance as there are many things he struggles to eat now.

And after all that, we still didn’t get a call back. I heard our doctor leave all my numbers, and his own mobile with the relevant person; I heard them promise to call him back. And I really thought that because it was another professional, and not merely a neurotic mum (yep! that would be me!) that they would have called him back.

I guess we’re back to the kneecapping option then!!!!

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

I know you're probably expecting a blog on something deep and meaningful today, maybe even helpful...or hopeful, well in that case, I'm about to disappoint you.

I thought I'd share my morning with you instead.

I've just spent an agonising hour trying to convince a doctor that the numerous scrapes and bruises that currently cover my body are not the result of me being a battered wife, but that I am actually nothing more than a very clumsy woman who has been roped into playing basketball.

'So why the bruises?' you may ask...Ha! not if you knew me.

I'm a tad clumsy, and if you substitute the word 'tad,' for 'totally,' then we'd be getting close. I spend so much time on my arse or flat on my face when we play that I actually came home with a footprint on my back last week. The slight black eye is due to my tendency to catch the ball with my face A LOT!

Now basketball may not be the obvious choice for someone as clumsy as me you might think, and I agree totally. But that didn't help me much when I got roped into it by one of Deion's over zealous (and basketball able) teachers.

We've found a wonderful wheelchair basketball team for Deion. The coach is a wheelchair user himself and plays for England, he has a great manner with the kids and they all love him. So because I was there hanging around waiting for Deion every week anyway, I apparently had no choice but to join in with the mums team.

'How bad can it be?' I thought, 'good for fitness, just throw the ball a couple of times, great.' Ha! I was very wrong. We may just be a group of mums, but we get quite competitive as it happens. The trainings fine, we're all smiles and 'how are the kids?' but split us into teams and tell us its a match and everything changes. No more Mrs Nice Guy!

The match looks more like a cross between a rugby match and WWF. And for some reason unfathomable to me, I seem to be right in the middle of every scrum/pale driver manoeuvre/five woman pile up going!

So yes, I may be a little battered, I may have a few bruises, but my goodness, I really enjoy the basketball. We laugh a lot as we pick each other up off the floor, and we are all prepared mums should the need to stem a bloody nose arise (it hasn't yet surprisingly). I enjoy the adult company, the female comaraderie and the vending machine does the yummiest hot chocolate.

Although I have to do is put up with Deions constant jibes about how rubbish I am compared to how fabulous he is. I really need to think of a way to bring that child out of his shell!!!

I invited the doctor to come along and see this phenomenon for himself, he declined, and although he eventually believed me about the bruises, I'm pretty sure he made a note of it on his computer.

Note to self, skip basketball when doctors appointment imminent.

Sal x