My top 10 tips for parents for when your kid is sick.

  1. Dont do laundry. Forget laundry. Buy new clothes, online if you have to. Only do laundry when you absolutely feel up to it or its absolutely necessary. Better yet, have someone else do it. Remember, Its not going anywhere!
  2. Have many beds. When a bed is puked on, peed on or worse (!!) in the middle of the night, don’t bother, clean the child and move beds. Deal with any disasters in the morning (although wet stuff should obviously at least be tipped off the bed).
  3. Own many sheets (see above). If you ever had to change 3 beds in the morning and expect to change them again in the day, you will know you need more then one extra set for each bed, ESPECIALLY if you are a follower of point one. Although this may be one of those “absolutely necessary” moments.
  4. Ipads, TV, phones, heck, any screen you can find. There. are. no. screen. rules. when. ones. child. is. sick. Oh yeah, thats for the mum…… you can apply this to the child also. 😉
  5. Pizza is a nutritionally adequate dinner when you need it to be. If you are gluten free and god knows what else free, you will learn to batch cook and get stuff from the freezer. Rice spaghetti with batch cooked bolognese anyone?
  6. Getting dressed is for losers. Pyjamas rules. If you MUST, then fine, wear day clothes that are presentable enough for the DHL guy (who is delivering your new clothes), but there must be no buttons or zips anywhere.
  7. Ice lollies. Get those ikea ice lolly makery things and freeze juice. Kids will LOVE these even when sick (and they will think you are a superb parent for supplying them).
  8. Keep plenty of medications on hand. Having moved back to Europe I have learned two things, pharmacies in most places don’t deliver, and they are usually closed at times when you most need medication. So unless you want to drive (in pyjamas) to the one open pharmacy at midnight thats 1 hour away, keep everything you need at home. Plus extras.
  9. Hospital runs never happen calmly. If there is even the slightest chance you may end up in one, pack in advance. Otherwise you will end up in there with uber ugly slippers (the other mums WILL laugh at you) and whatever strange stuff your husband / friend / neighbour can come up with to bring you 1-2 days later, usually stuff from the “I am donating this to the red cross box because it no longer fits me” pile. I speak from experience here. Just pack ok?
  10. Chocolate. Yes. It really IS the answer sometimes. I don’t even like chocolate so much. But sometimes. it fixes almost everything. Go ahead. Calories don’t count when your kid is sick 🙂

-Linda

 

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Then September came…..

September. The month when school starts, the mad rush to get clothes ready books labelled, running around, signing up for activities and….. for us….. pneumonia.

You know that Facebook looking back in time thingy..? In September mine has been filled with memories of Septembers gone, pneumonias. Lots of them with accompanying hospital stays. Hospital stays in Dubai and here in Poland.

So school started, big brother started school. Big brother got a cold. Little sister got a cold, and before we knew it, the pneumonia was a fact. Low oxygen levels, not super low, but low enough….. We did it at home with a supportive dr. and a mummy who knows her stuff. God Im tired.

Hubby is here. We have requested oxygen at home. Its September, a pneumonia already…. we are in for a long winter. Like every winter. Enough is enough. Let us treat her at home.

A year or so ago a dr. mentioned briefly to me that we may be prime candidates for oxygen at home, my thoughts then, NO, WE ARE NOT THAT FAMILY. My thoughts now….? WE ARE THAT FAMILY, GIVE US THE FUCKING OXYGEN!!

I kept her at home this time, through oxygen levels that should have been treated. But how can we put her in hospital every bloody time when they cant keep her safe there? When she cant eat there and when she is exposed to a gazillion germs? When she is so so frightened and agitated. When it puts all our lives on hold and makes everything so so much worse.

Its ok, we will be that family that has oxygen in the home, I really don’t care or mind, we are that family. Just give us the oxygen, please!

This is when I start telling you all how tired I am, but thats like a theme that runs through the entire blog, so let me leave it out this time.

I will say though – before anyone jumps on me – that kiddo was safe. Should be treated yes, but safe. I was in touch with a dr. the entire time and I have monitors at home. Just need the actual oxygen. No jumping please.

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Oh sheesh, just read through and I mentioned tired, twice. See how tired I am? lol 😛

An unwilling homeschooler

Yup. Not only am I one of those mums *insert eyeroll*, I am now also about to be one of THOSE mums *insert even bigger eyeroll*.

We are back from the lung hospital. We have the results from the immunologists. And guess what, there is nothing wrong with with our kid! (Apart from recurring pneumonias with low oxygen levels).

PCD, CF, back normal, no growths or foreign objects in the lung. No asthma although she may be heading that way. A couple of new allergies diagnosed. All immune levels are ok, some a bit low, but within the accepted range, some signs of autoimmune activity that needs to be followed up but thats it.

The doctors agree that its not normal to get so many severe pneumonias, and they agree the low oxygen levels that go along with it are also not normal, all our specialists were so sure they would find something, either in the lung or with her immune system, and I know I shouldn’t be disappointed, because obviously its great news that she’s ok and its not one of the big things, but I cant help but think that this isn’t over at all….

Oh, and there is a plan. Her pulmonologist and immunologist agree that she needs “time off”. A year off school I asked, and the reply was; “probably more like 2”.

I should be happy about this as well as my gut instinct has been telling me for a good year or two now to take her out of school so she can rest, but again, I feel cheated somehow, I wanted a better answer, an answer where we could actually DO something.

I know, it makes sense to have her rest and not be near other kids for a couple of years, if one pneumonia takes 6-12 months to get over she really does have her work cut out for her. But a diagnosis of ‘lots of bad luck and vicious circle and immune system that needs to mature etc’ just doesn’t sound very much like a real diagnosis to me.

One of her antibodies to pneumonia was a little low, but not so much, her overall igg is a bit on the low side but acceptable, the igg1 a bit on the low side but acceptable. FUCK acceptable. Acceptable doesn’t get us anywhere. What if we wait two years and then after that there is no change?

Now back on to the steroids also, yeah, the ones that make her not grow and suffer from bone pain. The ones that make her cry walking down the stairs, the ones that when she came off them she rapidly grew 3 cm!

Im so so tired.

On the bright side we have had doctors confirm she shouldn’t be in school and the paper work to support it. On the not so bright side I need to come up with a home schooling plan in a country where you are only allowed to home school in extreme cases and if so then it must be in Polish.

Anyway. Bla bla. Still sort of processing all this, and Im feeling positive, ish, but also not so much.

Deep breaths and all that.

-Linda

Everything happens for a reason…. right?

Not going to update you all on speculations. There are many. When I asked our doctor if they would find it this time the reply was ‘we are not letting you go til we have’. Feels good, reassuring. I cant wait now to find out, I cant wait so that we can help her.

This last pneumonia scared the living daylight out of me…. at one point we had 12, yes twelve doctors in our room, from ICU, pulminology and immunology, all trying to figure out what to do with this tiny weenie little girl who kept going lower and lower with her oxygen levels.

She didn’t speak for 4 days, then on the 5th day small words came. Day 6, finally sentences. Im in bits now. I wasn’t then. I was the calm and collected super mum, always am. After… thats another story. Day 8 we went home. We have enough medications on the dining room table to run a small clinic.

So now what? We wait, we wait for test results on the IGG subclasses (other fancy terms no parent ever should need to learn!), then once we have those we go to Rabka, another hospital in the mountains, but with more advanced diagnostic methods, they may need to see the inside of her lungs (how the hell this happens I have no idea, Im scared to ask).

Then after that, unless we have a 100% diagnosis at that point we are off to Krakow to the immunology hospital there, who have diagnostic tools that they don’t have here.

Whatever is going on with pumpkin pie, its not her celiac. This crap, its something else. No stone will be left unturned, but the belief is that its her immune system, something I have been saying for a couple of years now.

I do believe everything happens for a reason, and if this is what we have been sent to deal with then so be it. We need to try to make the best of it and do the best we can to make life as “normal” as we can, for celiac kid, but also big brother who always ends up coming second.
And no matter what we are going through, there are always people who have it far far worse. Complaining wont help.
We are still lucky. We could be the far far worse people….

-Linda

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Catching cold in Poland (totally = death)

96-flower_slippersYes, its true. Ask any Babcia! If you forget to wear slippers in winter or socks in summer on the floors, then you will surely catch pneumonia pretty much instantly. If your child does not wear his or her jumper you are a very very bad parent. Its true. Really.

It doesn’t matter how many times you tell a babcia (a grandma / older lady) that pneumonia or a sniffle is caused by viruses or bacteria, they know better you see, and the answer to all evils is to wear slippers at all times.

I think these babcias would have a heart attack and die on the spot if they knew that we in Sweden allow babies to sleep outdoors all year round. We also sleep with windows open and often leave windows open in such a way as to create a draft. Yup, even in winter. Air you see is good for you. In Sweden at least. In Poland a draft can result in imminent death almost as fast as not wearing slippers. (Read about the killer draft here on my friends blog)

Its not only babcias, also well meaning aunties, random strangers, and believe it or not, doctors! One would think that slippers is the answer to the entire worlds problems. Perhaps if we all wore slippers we could close down 50% of hospitals…. at least!

I have had well meaning stranger babcias stop me in the street to tell me to put more clothes on my kids. NO JOKE. The more polite ones just tut and shake their heads while giving me one of those babcia looks.

Now, lets not even start on the cold milk in the cereal in the morning…… (instant killer)

Linda

You win some you loose some….. (allergies!)

So we are back from the hospital in the mountains. It was amazing, gorgeous, and calm and everything you could possibly ever ask for in a hospital, the scenery in Karpacz is amazing. Oh, and they could FEED her! First hospital stay where she ate the food!!

Results? Well, not all test results are in yet, but it looks like CF is more or less ruled out. Celiac kiddos lungs are healthy with no damage! If anything she has strong lungs that have been able to cope with so many pneumonias. The doctor almost got himself a big slobbery kiss when he told me this. Then I remembered Im married (although the news was so amazing Im sure hubby would have forgiven me, heck, even done the kissing himself!).

We left with a couple of handfuls of more allergies diagnosed, but egg was not giving a reaction this time!! We had an egg challenge which went well so we are now able to introduce limited egg to the diet!

So what remains now? The liver, kidneys, lungs, heart, spleen etc have all been looked at! So, now the immune system. Her blood is fine, but part of the immune system has something to do with the cells, so thats next on the list. We are also being reffered to the paediatric gastros here in Wroclaw to speak about her growth (which is not really happening) and follow up in regards to her Celiac.

Now fingers crossed the genetic test and last sweat test comes back clear, but the doctor wouldn’t even consider that it may not as her lungs are GOOD! Woop woop!

I leave you with some images from Karpacz, all iPhone pictures, so just imagine if I’d had my proper camera!

-Linda

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