Monthly Archives: October 2014

The meaning of life…..

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Pretty deep right…? I am not very religious, I don’t really pray or go to church, but I believe that good things happen to good people, I believe there is a reason for everything, I believe that what happens to us has some kind of meaning, reason. I have to believe this, because thats the only way I can really accept it. It is very clear to me why Celiac kiddo, MY kid was diagnosed with celiac…. because the UAE needed us. Look at the massive change and impact my campaigning has made to the lives of thousands in the UAE. Blatant obvious reason. It was meant to be, it had a higher purpose.

But now…? WHAT THE HELL is the meaning of this? Have I not done enough? Can I just please rest now? I cant make sense of any of this. Its not fair (<- said in the voice of a grumpy 3 year old child). Im tired now, I need a break….. we all need a break.

Not a holiday break kindof break, but a go to school every day and nothing crappy happens for ages kindof break. Its not really to much to ask is it? I keep paying stuff in to the karma bank and I do whatever I can for others, charities etc….and still now…. Im just so tired.

So much for opening wordpress to try to give you all an upbeat happy post….

Really, Im not an ungrateful cow, I know I have so much to be grateful for – even in all this. I am grateful every day that we are together, that I can spend every second on my day on focusing on my children, that we have awesome doggies, that we have a nice house to live in and can afford to buy the best foods the shops have to offer. That my kids go to a great private school with small class sizes, etc etc etc. But now, please, I just want normal. for a bit…..

-Linda

Blood tests, ambulance rides and extra oxygen.

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Well, I guess I knew it already as I was writing my last blog post…. we got to the clinic and they wanted to call an ambulance to send us to hospital straight away (in my opinion a slight over reaction on their part). I refused the ambulance (why scare the children more then needed?) and drove home to grab bags and iPads and food. Dropped son at neighbours and went to hospital where we were admitted.

This latest hospital stay was actually the smoothest one yet, maybe because I am getting so used to them? Or because I know exactly what we need? I actually have a bag thats always partly packed in a wardrobe, likewise we have a small bag partly packed for son. After this latest stay the bags will be improved further, but they sure do help a lot, especially if someone else has to go to my house to get stuff.

The hospital stay in itself was eventful…. Every test they could think of and then some has been done. It seems Celiac kids haemoglobin is high, her body responding to oxygen levels that are too low and trying to adjust them….. clever on her body’s part, but not good for her. The pneumonia was also a bit of a mystery, a strange kind, very severe, not the kind of pneumonia ‘normal’ people get. Well, my daughter is anything BUT normal, haha (that haha is mildly hysterical by the way). Its almost as if she enjoys playing games with science, because her test results are always a bit strange and baffling.

We were sent to a different hospital to be tested for Cystic Fibrosis. Its a sweat test. Above 60 is positive and below is negative, but a negative should really be below 30 or it needs to be investigated further. Celiac kids result was 49.

I am calm. Hubby is stressed. And I remain calm. Sortof. Celiac kid is super exited because the trip to the other hospital was by ambulance, and the super cute ambulance guy gave her both lights and sirens the whole way after she asked to hear them! Haven’t seen a smile like that in ages!

Normal people don’t GET this many pneumonias. Is it still her RSV as a baby giving us crap or is it the celiac and the crappy immune system being silly? At this point I think we need more answers, because if my counting isnt completely off we are now at something like 11 pneumonias, a handful of bhronciolitis and countless upper respiratory illnesses.

I actually think we struck gold at this latest hospital visit, because they are as concerned as I am, and I didn’t have to be assertive (read bitchy) in the slightest to get some action.

We were admitted on monday evening and they finally let us go Saturday evening after some straight talking to from hubby. They just cant feed a celiac kid in a hospital here, and if you really want someone to get better they need proper food! Thankfully her oxygen levels weren’t super low so she was only on 1-2 litres until Friday then she managed ok without.

We have been back to the hospital daily since. She is having her last antibiotics today. Next week we go to a mountain town that has a specialist hospital to be admitted for a few days, there they will check her lungs properly and hopefully before they let us go we will know more definitive answers as to why she keeps getting this sick.

We did the Cystic Fibrosis genetic test too, Im guessing they will repeat the sweat test next week also. The genetic test only checks for the more common genetic mutations but around 90% of Cystic Fibrosis should show up in this. To be honest I don’t really trust the sweat test anyway because I’m so used to my daughter having results that aren’t ‘normal’.

I wasn’t really going to write about this at all, but then I figured that its probably good to write about it, because no matter what the results are eventually, our story can probably help others. Much of the information about cystic fibrosis is pretty scary, but to be honest, if she does have it, then we already lived with it for 5 years anyway, so putting a name to it (whatever it may be) can only be a good thing so that we can help her. We are obviously hoping its something else, but lets see.

Trying to explain now why we are going to hospital without being particularly sick has been harder. Then the question ‘will they poke me?’, which breaks my heart, because obviously they will but I so don’t want to tell her this and make her cry! By poke, she means needles. She is still bruised black and blue on her arms from the IV going in last week, her veins kept bursting and it was only attempt 5 that was ok!

Anyway, thats whats going on with us. Hopefully you are all having a better month then us.

I have decided to stay as positive as I can, feed the kids the best and most nourishing food I can think of and just breathe deeply as much as I can. Me losing the plot is hardly going to help.

– Linda

Oxygen watching…. again.

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Is there anything worse then sitting and listening to your child’s breathing..? There is this fear that is just unimaginable. Like now, her fever is high, the wheeze is not so bad, but I can hear that she is starting to breathe faster… its like I am just WAITING. What the hell am I supposed to do? There is nothing I can do…. just wait. People don’t get it, no one gets it. I don’t need anyone to get it really, but the well meaning ‘oh, yeah, when such and such was little he was sick a lot too’ just makes me feel even more isolated and angry, because this kid is nothing like that kid, this is not a kid who is sick a lot, this is a kid who goes in to respiratory distress, falls unconscious etc etc, and it can happen at rocket speed! So I am sorry, sitting here watching my kid breathing… but that such and such kid that was sick a lot…. he/she is nothing like this. Im tired of this, Im tired of people not getting it, I am tired of it being belittled, Im tired of waiting… Im just so bloody tired. I wish (as horrible as it is) that there was someone out there who actually really ‘got it’. I think it would maybe, just maybe make me feel a bit less alone. I just want someone who understands, truly understands to give me a hug.

I know I know… I should stay positive etc, and I am always the one smiling, trying to laugh it off, shrugging with a smile and saying, ‘well hey, life goes on’ etc etc. I often tell people that we are the lucky ones, because its not a brain tumour or leukaemia etc. And I really DO mean it…. most of the time.

Its not so easy being that positive all the time. Its not so easy shrugging things off when fear holds your heart in a vice like grip and you think your brain might haemorrhage just from too many thoughts being in there.

I was talking to my husband the other day about what WE are going through, we as parents, and especially me as I am the one dealing with it all, and the truth is that if I actually had a job (which I don’t), I would probably end up being signed off for years due to hitting the wall, stress, burn out and whatever else you might want to call it. I cant be signed off of anything though, because this, here, sitting and listening to her breathing is my job, and there is no one else to do it.

How do you handle living like this? I have no idea… Im trying super hard to think about things like how the grass needs cutting and what we should have for dinner, although at the back of my head there is the hysterical voice going;

“ok its ok shes still breathing slowly, oxygen is 94 its still acceptable no need to panic just yet, what the hell should I do with V if we need to go to hospital, I wonder who will watch the dogs, should I pack the bag, wonder if there is a fridge in the hospital and if P’s mum can come and stay for a bit, shit what about the school party on saturday, is she still breathing for fucks sake calm down woman she’s ok we are still home just calm DOWN it will be ok it will be ok it will be ok… but what if its not, thank god she’s sleeping now, omg what if someone rings the door bell and wakes her, oh no… someone bloody well better not ring the doorbell I will KILL them, is she still breathing????”

Dr’s appointment in 5 hours and Im afraid its to late, that we will have to go to hospital before that……

😦

DONT RING THE BLOODY DOORBELL!