Blood tests, ambulance rides and extra oxygen.

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

We have the muppets.

Sometimes I think to myself, if I wrote about ALL the stuff that happens in our life, people would think I made it up. So I wasnt going to write about the last few days, but I will anyway. Because Im laughing now, and its funny in a comedy movie sort of way. Short version.

Thursday afternoon going home from school A (Celiac kid) says her cheek hurts ALOT. I think maybe she has a small sore in her mouth, maybe she got contaminated. With clean hands I check the inside of her cheek. Nothing there.

Fast forward to two hours later, I’m lying on the sofa playing some game on my iPad, kids are watching TV. I turn around to look at A who is whinging about her cheek and I literally FLY up and in to action. Her cheek, on the side, slightly below the ear, has swelled up to golf ball size! All Im thinking is airway! What if the swelling is inside too! Call our doctor who says she cant see us straight away but to take her to the emergency room. We already had shoes on! GO! Mad drive through the city. Get to emergency room. 2 doctors and 4 nurses then spend ten minutes arguing about how to do our paperwork, kids are Polish, but have no pesel numbers (long story). Im thrusting my credit card at them saying it doesnt matter we arent asking for free care, we will PAY, just please LOOK at her. Finally another doctor looks at A while the others argue with her that its against the RULES (people in Poland are very concerned about rules and the right way to do things – at times, its infuriating – because while they all argued, A had swelled up further). She reassures me there is no threat to the airway, but because we are paying we must go to another part of the hospital. Off we go, its far enough that we need to drive around.

We get to the gate I think we are meant to go in, and the man speaks no English, I refuse, REFUSE to give up, so I shout at him in English, Im tired of being ignored (in general, not by this man), its a hospital, my kid needs to be seen and I cant understand you and LET ME IN GODDAMMIT! Barrier opens. Jenki bardzo! (later I realise we actually parked in the doctors only parking, poor guy, but at least shouting in english sometimes works. I need to send the poor guy flowers or something, I thought he was just being difficult because I was speaking english – oops!)

In this part (of the hospital) we are helped instantly. The hospital is huge, clean and very empty. A doctor and a med student see us. After a while the Dr calls for all the english speaking med students to join. Story of our lives, A is an interesting case, but hey, the more the merrier 🙂

The doctor is very concerned that it looks like mumps, and although A has been vaccinated we are at that point again where we wonder, does A’s immune system know she has been vaccinated? I call my husband, tell him it may be mumps, he’s like a gigantic question mark, SWINKA I say. Because Im getting really good at Polish disease names and hospital lingo.

Because its suspected mumps we need to go to another hospital. Some infectious disease place. The couple behind us warns me in english the place looks awful and not to be frightened, its not as bad as it looks. I think in my head it must be like the Poznan place and smile and say thank you.

GPS and me and kids drive to the other hospital. Well. GPS takes me to allotments in the middle of nowhere, I reverse, go around. Search. Eventually hubby has to help by phone, him and his Polish friends all get involved. We need to go to opposite the graveyard! but opposite the graveyard there is something that looks like an old deserted asylum, the kind of place horror movies are made in, you go in…. but NEVER come out….. I drive around, many times. I find a door, hubby says, ‘Go in and ask’. I sit, in my car, thinking NO WAY. Im laughing pretty much the whole time, I actually started laughing already in the first hospital, because these things, they only happen to us.

I take photos, because Im thinking no one will believe me. They are all iPhone photos, not great quality, but I have to share them…..

 

So, hubby calls them, and they explain exactly in which part of this huge complex they are. By this time its getting dark, and the feeling that Im in a scary movie is hard to shake off.

I park, away from walls and shadows, haha! And walk towards the building. A nurse nods and smiles and points to some chairs under a tree. Wait there she says. Im not kidding. Under a tree.

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Part of me now thinks Im in some joke show, you know where they pull a prank on you and someone will jump out in a minute and explain its just a joke.  That doesn’t happen. Instead a dr. opens the door and lets us in. She doesn’t look like someone from a joke show OR a scary movie, she speaks english and she’s lovely. She examines A and says no tests needed. She believes its an infection of the salivary gland and not mumps. She goes to type some forms for us and I cant help it, I have to snap some more photos, because  feel like Im in a time warp of some kind and Im in the wrong decade… possibly even century!

I get my paperwork and get in the car. My phone beeps and I look, its from hubby. ‘So, is it muppets?’.

-Linda

A note, I have now been to 5 different hospitals in Poland and although two of them were extremely old buildings the staff have all been great. Most medical facilities in Poland look nothing like the one above so don’t let this post put you off. 

I write blog posts in my head…..

Every night its the same story, I cant sleep, my mind is whizzing and swirling like crazy, so I write, in my head, and some totally amazing oscar winning material style blog posts are written some nights. Of course, by morning, I dont remember a word and dont feel inspired at all.

I realised I haven’t written much on here about life, and about the things around us. The truth is, I rarely write unless its positive. Why? Surely people who want to share our lives by reading here want the good with the bad? Or is it just that living for so many years in the Middle East has made me unable to write negative things out of fear of being told off? Freedom of Speech is a great thing, but I actually set far harsher limits on myself then any government. I still – even though I can speak openly – don’t speak badly of people, companies, brands, institutions etc. I am pretty sure if I had, there would have been a ton more traffic here, but I also don’t write for traffic.

I do however owe you all some posts, about another move we are about to make (yes I know!). About hospitals in Poland, about people who speak perfectly good english refusing to do so, about the school which we decided to pull the children out of, about Poznan, about Wroclaw (my new love!). All those topics have been covered extensively – at night – in my head. Sorry about that, I will try to get them on to paper (can you even say that nowadays? on to an electronic devise?) asap, I promise!

I leave you with a picture of a road sign – deep in the middle of the Polish wilderness, just because, blog posts with pictures are nicer then blog posts without 🙂

-Linda

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Another one of those trips….

Im not entirely sure of the point of this post, and usually my posts have a clear point, but I had to write it, because I need to somehow process this, process that this is our life, and this is how we live. Its not a nice post, it wont leave you feeling gooey or good inside, or even enlightened, it wont make you laugh. Im sorry. Feel free to not read it. 

In the last few days Ive been through what no parent should ever have to go through… ever. Whats worse is that it wasnt even the first time, or even the second, or third… the truth is, I have lost count of the number of times that I have held my limp daughters body in my arms, the amount of times Ive driven like a lunatic actually hoping the police would stop me so they can help me get to the hospital faster, the amount of times Ive entered some kind of auto pilot where I just function and do all the things I need to do but I dont feel or react to anything, because if I felt or reacted, I would have had a nervous breakdown, meltdown or a whateveryouwannacall it ages ago.

So, my daughter is Celiac. Big deal huh? Many Celiacs live somewhat easy lives (and I dont say that lightly, I know all to well what the life of a celiac involves), other celiacs, like mine has a number of health issues. Are they related to her Celiac or other factors? Nobody really knows, but what we DO know is that her immune system sucks, her lungs have damage from her many many cases of pneumonia and upper respiratory infections, and Celiacs are more prone to pneumonia, on top of that she was born 6 weeks early and her lungs were probably not as great as they should be. I still fully believe that had my daughters celiac diagnosis come sooner, we would not be facing all these issues that we are facing today, some maybe yes, but not all.

So Monday I had a call from school, she was coughing alot, so I went in, gave her some meds, she seemed fine, no temp, no big wheeze, just the cough. I asked if she wanted to stay, and she did. A few hours later, another call, she’s coughing even more. I go in, and sure, she’s coughing, but not to bad, but I take her out of class. We hang out outside, play for a bit, she runs, plays hide and seek in the bushes, ‘mummy, can you seeee meeee?’, no big deal. We wait for her brother, he finishes and we go home. On the way home I see her looking a bit more pale. The tiny worry thats been inside me that I kept brushing away as me over reacting (because Ive been here before and Im maybe just hoping Im a bit hysterical and wrong rather then right!) is now growing. We get home, she’s coughing, I give ventolin, it helps… for about 10 minutes. I call my husband to call the clinic. They have an appointment only the day after. I give the kids soup, I pace, I ask the husband to find me addresses of hospitals, just incase you know, because Id rather know where to go, just incase…… I pack a bag, why? Im not sure, I had to do something, I guess I already knew, but wanted to believe that I was being a hysterical mum. She’s getting worse, I can see her chest rising and sinking, and its going to fast, to deep, and she’s not well, I know she’s not right, but its not THAT bad…. I put her in my bed, I lie with her, hoping she just needs to rest. Im lying with her, watching her chest rise and fall, thinking in my head, we need to go, we need to go, we need to go, at the same time as Im thinking, its ok, she will be better soon, its ok. Then I hear a cough and a splutter, and shes covered in vomit and so am I and so is the bed, and thats when my autopilot kicks in, the decision has been made in my head, we need to go, and then the ‘doer’ comes out and sorts everything. Son brings towels to cover the puke on the floor (yes I obviously pulled her off the bed as soon as I could), I pull sheets off the bed and pillow cases of pillows, I sit daughter in bathtub, I call husband to tell him we are going, I take the bag and add even more gluten free food and iPads, I take phone chargers, then I somehow manage to get us all dressed and ready and the pukey sheets thrown on to the floor of the laundry room. Dogs get locked in our biggest bathroom with food and water. Im doing it all so fast, but it feels like slow motion.

By the time we are in the car and driving (probably less then 10 minutes after the vomiting) she is drifting away, not unconscious really, but not responsive either. Like so many times before its all happened so fast. The GPS sends me the wrong way, or maybe I took a wrong turn, I drive like a crazy woman, but yet Im calm, extremely calm, like ice. We finally find the hospital, but the area is a mess and no parking that I can find, its dark, all the signs are in Polish and I just want to get in. So we park in a car park, not close enough, and my big brave 7 year old who must be absolutely terrified, helps me with all the bags, and I carry my daughter and we run. We run, and we get there, and I get to the front desk, and I ask the lady those familiar words, ‘do you speak English’ and thank heavens she says yes and I sit, and I open my girls coat and I point, and I say, ‘her breathing, please, she cant breathe, she has a history of low oxygen levels’.

This is a kids hospital A&E just after normal clinic hours, they are super busy, but we are whisked in to a room within seconds of our arrival and 2 Dr’s see to us almost immediately, a nurse helps translate and then husband on phone also. None of this matters, we are there, we are safe.

I don’t need to continue the story, this was 5 days ago. We were admitted of course. Daughters oxygen levels were around 87 when we arrived. We have been in an ambulance with levels higher then that. I know for a fact they were not that low when we got in the car, once things get bad they get bad fast. We have been let out now, not because she is well enough to be out, but because there is no place worse for someone with a crappy immune system then a hospital, the hospital is also not really able to provide 100% gluten contamination free food, so home is better. We had to beg and plead, but yes, she is home, with twice daily visits for IV meds. She is still very sick. Pneumonia. Her blood tests were repeated many times already, and it seems the day we came in is pretty much when the infection started, because the level of infection was low, so we caught it fast, caught it early they say. But how is that possible when she went from playing hide and seek in the bushes to being pretty much out of it in about 3-4 hours?

Celiac disease absolutely sucks. Pneumonia also absolutely sucks.

-Linda