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.
What a brave little angel she is. And what a careless kitchen to mix the celiac kids’s meal with the bread. Infuriating.
Hospitals are notorious places to expect to be fed decent gluten-free food- here or anywhere else. They are dependent on what they can get from distributors, let alone what can be
prepared. This is a frontier that needs a whole lot of work. With two cousins in my family with cystic fibrosis, I was going to suggest getting her tested for that, but didn’t want to scare you, Good those docs are following through and doing a genetic test as well. Hopefully you will have some definitive answers soon. Meanwhile, thanks for keeping us posted and know that our prayers are with you. And, by the way, you can vent here all you want!