Tag Archives: baby girl

Diagnosis: A Rough Week!

Just because things could always be worse, that doesn’t mean they couldn’t be better! Or, that you haven’t been through some kind of traumatic “Beam me up Scotty” experience where only bits of you have returned back down to earth. You’re feeling strangely fragmented and more than a little bit shell-shocked.

You should never have to apologise for these less than spectacular moments just because they don’t turn out to be something major. You are still having to go through the same hoops and they aren’t usually much fun in themselves either.

At the same time, these stresses can create post-traumatic growth because even though you might feel dreadful at the time, you are actually becoming “Tonka tough”. Through building up resilience, hardship adds new whiz bang state-of-the-art equipment to your personal tool box so you can fly and literally soar beyond all the crap and off into the blue yonder. That is, once you’ve cleared the ground.

“The heaviest of burdens crushes us, we sink beneath it, it pins us to the ground. But in love poetry of every age, the woman longs to be weighed down by the man’s body.The heaviest of burdens is therefore simultaneously an image of life’s most intense fulfillment. The heavier the burden, the closer our lives come to the earth, the more real and truthful they become. Conversely, the absolute absence of burden causes man to be lighter than air, to soar into heights, take leave of the earth and his earthly being, and become only half real, his movements as free as they are insignificant. What then shall we choose? Weight or lightness?”
― Milan Kundera, The Unbearable Lightness of Being (somewhat chauvinistic but still a good quote.)

We’ve had a pretty grueling week taking our 9 year old daughter to have a Barium Meal and an endoscopy to test for things like coeliac’s disease and other gastric nasties  So, it’s no wonder I’m feeling awful and I’m left wishing I’d snatched the anaethesetic mask off her face and breathed deep, so deep that I’d still be asleep. Not that I want to make it permanent. It’s just that after all this stress,  a good dose of anaethesetic is just what the patient’s mother has ordered.

“Name…Date of Birth…” Asks the nurse.

Damn! It’s pretty obvious I’m not a 9 year old girl.

Neither of these tests were nice or something you put your child through unless you’re pretty sure there’s  a problem. After all, they’re not an ice cream taste test challenge. In the case of the Barium Meal, it involves feeding a little person who is quite the non-eater  yucky, chalky tasting stuff. In the case of the endoscopy, they’ll be shoving a camera down into her stomach on a long tube. On top of that, there’s also the scariness of going into hospital and her terror that if she’s coeliac, that she’ll have to be gluten free and “never be able to eat party food ever again”. I don’t think the whole thing of having a camera fed done into her stomach had even sunk in and we certainly weren’t pressing the point. She was being so brave and courageous but she did want it over and done with.

As I said, you don’t put your child through all of that without very good reason. Our Miss is quite underweight and has trouble eating more than just a sparrow-sized meal. I have written sagas about sandwiches returning home untouched. That’s annoying and wasteful. However, the real gripe with all of this, is the shocking bad moods as her blood sugar plummets and Miss Jekyl returns home. These mood swings alone justify a swag of medical tests as they can be very draining.

By the  way, I should also mentioned that I’ve been through these tests myself. I can’t really remember the Barium Meal and I just remember the post-anaethesetic haze when I woke up from the endoscopy. I’ve been through much worse and they really are relatively minor tests but it’s very different watching your 9 year old daughter going through it than doing  it yourself. Indeed, so much worse that I really could have used that anaethesetic.

“for there is nothing heavier than compassion. Not even one’s own pain weighs so heavy as the pain one feels with someone, for someone, a pain intensified by the imagination and prolonged by a hundred echoes.”
Milan Kundera, The Unbearable Lightness of Being

Anyway, the tests began with the Barium Meal swallow on Monday. Needless to say, I worked myself up into quite a frenzy, wondering if she’d actually swallow the stuff or stubbornly refuse or even throw it up? I expected tears, protests and the biggest tantrum ever recorded and was truly bracing myself for the worst.Consequently, Geoff took the day off work and came with us and I’m sure that helped to maintain the peace because she was fine and handled it all like her mother.

Then, we had to wait for the results..

Stick any sort of probe into your body’s dark and mysterious innards and you have to be prepared that they’ll find something you might not want to be found. Now, I’m not talking about that secret pot of gold you buried in there years ago or other forms of hidden treasure. I’m talking about all those potential nasties which could be lurking in your body that you don’t want to know about. You have to be prepared that one of these has moved into your body and may not be willing to leave. Of course, Google fuels all these fears better than kerosene hurled on an open fire, lading to all cyberchondria is all it’s numerous mutations.

For our daughter,  the Barium Meal test was looking for structural anomalies such as a twist in the oesophagus. I quickly decided that we didn’t want this…especially when I read that the appendix can also be in the wrong place and need to come out as well. All of a sudden, I pictured our precious baby girl being carved up like a lamb roast as they seemingly rearranged and extracted her insides. My goodness. I quickly exited that diagnosis. Yes, we were definitely not having that…not that you can pick and choice your diagnosis or its severity but we all like to think illness is like a shopping list and we can have some degree of choice about which diagnosis we put in the trolley. Ha!

When it comes to medical test results, there’s the good news, the bad news and the inevitable inconclusive question mark. Obviously, we all want the good news but if everything was fine why was there a need for the tests in the first place? As long as there’s effective treatment, the bad news may not be quite so bad as it first seems if the problem can either be fixed or managed. However, the more I think about it, the inconclusive question mark might just be the worst result of all. Being neither good nor bad, this can easily fall into the rare disease category where you start hearing phrases like: “we don’t really know” and “I’ve never seen this before.”

Trust me! I know all about that!!

Anyway, the Barium Meal test went well and was relatively uneventful, although she did complain about the taste.On the other hand, she said that the x-ray equipment was great fun because it twirled her around. That was an unexpected joy so you can’t predict how these things are going to pan out!

The results were great and came back without a glitch!!

With Thursday being the endoscopy down in Sydney and a hospital admission and all, I just wanted Wednesday to go smoothly without any complications and for everything and everyone to leave us alone so we could be prepared. Of course, this is almost like an invitation for all those nasties concealed in Pandora’s Box to suddenly fly free and attack and that’s exactly what happened.

Our daughter was feeling sick and so she stayed home from school. Our son, who is notorious for being unable to find his shoes, was missing one shoe and saying he couldn’t go to school. What’s more, he was really starting to rev up with something of an Oscar- winning drama performance  and was refusing to look for the absent shoe  and was leaving me to do all the hard work, while throwing out incendiary devices such as: “You hate me!” Did I mention that he was still playing Minecraft through all of this? I was fuming!!! I was pulling out every trick in the book to get him to budge and eventually he moved. Found his shoe in a completely different room to where I’d found the other shoe and he was off to school. That drama was frustratingly stressful and very, very draining.

After a recharging cup of tea, the day was proceeding well and we were mentally psyching ourselves up for the big day.

That was until the phone rang. It was the school. I don’t like it when the school rings because they obviously never just call up for a social chit chat. There’s always a drama involved and while sometimes it’s simply a one Act play. More often than not, we’re talking the full four acts and an encore performance.

Mister had been hit on the head with a didgeridoo and wasn’t feeling well. Could I come and pick him up. What the @#$%?!!!! What were the chances?

It could only happen in Australia! Moreover, it could only happen to our son and at the most inconvenient moment. We specialise in statistically rare disasters in this house.

When you think about your child’s head doing battle with a didgeridoo,  being a hollowed out lump of wood, you don’t need much imagination to start seeing stars, concussion, a fractured skull, emergency brain surgery and,,,and…and…Oh yes! There’s also missing the signs of all of the above and we all know what that means.

I didn’t need to be thinking about taking our son of to Emergency with a suspected skull fracture not to mention bleeding on the brain the night before we’re taking our daughter off to hospital. I understand that parenting often involves a lot of multitasking but seriously this is all a bit much for even us to handle at once. We’re only human. Dear Lord, please remember that. We’re only made of flesh and blood and we can only take so much.

However, he refused to go to the doctor and perked up and went off to the cafe with my mum and Miss, while I went and had my blood test in preparation for my specialist appointment. Then I was off to my violin lesson and a talk at the high school. It was a very busy night…especially when, as I said, we just wanted peace..peace almost at any price!!

But this is my life we’re talking about and it is heavily influenced by Mrs Murphy’s Law. That’s right. Mrs Murphy says Murphy was an optimist.

Staying up way too late again writing on the blog, I was just getting out of my chair to go to bed when my good ankle crunched and I was in agony. Not as bad as when I broke my foot but certainly up there. I started to wonder what the chances were of breaking the 5th metatarsal on the left foot while the right foot was still healing? Then again, there’s odds and statistics and then there’s me.

My mother often says we were born underneath an unlucky star and as much as I try to prove her wrong, sometimes I succumb. Putting my good foot out of action the night before Miss goes to hospital…this was no conspiracy theory. Bad luck not only follows me. It eats me on toast. Not that I’m complaining or whingeing. The situation is what it is but as much as I have rotten luck, I’ve had so much experience fighting back and overcoming all this crap now, that I’ve developed a fight back routine which not only puts me back in the box seat. It also makes me better prepared for the next round.

So, after somehow getting through Wednesday, it was Thursday and we were off to Sydney to take Miss to hospital for the endoscopy.

By this stage, I’d all but decided our daughter has coeliac disease and I’ve been trying to get my head around becoming gluten-free. She has been very upset about the possibility of having to be gluten free and had a complete meltdown over never being able to eat party food again. These are big things for a kid and not easily dismissed with the usual Australian cop out: “she’ll be right, mate” and I didn’t try either.

Rather, I suggested that she try not to think about it too much and get busy doing something else and if she’s gluten free, we’ll deal with it then. I also reminded her that other people we know are gluten free and they still have yummy foods. It’s not the end of the world. Actually, coeliac’s disease can be quite serious but I didn’t want to stress that. From my experience, coming to terms with bad news is a bit like trying to eat an elephant. You’re best digesting it one mouthful at a time and not in one, painfully large gulp. This, of course, is the danger of Googling your symptoms and doing a selfie diagnosis. You can read the very worst cases and swallow too much information at once and even make yourself terminally ill!!

We are still waiting for the final results. So far they haven’t found signs of coeliac’s  but it seems her stomach may have delayed emptying. We’ll just have to wait and see, which I hope means whatever it is, it isn’t too severe.

Meanwhile, although I’m not superstitious but it’s Friday 13th today and of course the bad luck didn’t leave me alone. I might not have seen that wretched black cat cross my path but I know it was there. Otherwise, how would you account for yet another nasty fall this week and my right  foot back in the boot?

That’s right. The boot is back on the right foot.

Yes, I am feeling annoyed about it all and just because these falls are frequent, it doesn’t mean they don’t hurt even if I’m smiling. That I don’t need a hug or a bit of TLC. I might be strong but I’m still human and I bleed.

Do you have any experiences you would like  to share? Living with ongoing, resistant adversity isn’t easy though we triumph and inspire. If you are also traveling in this boat along with us, we send you our love, compassion and understanding. Take care!!

Love & Blessings,

Rowena

PS: BY the way, I just found out that it is ironically National Coeliac Awareness Week in Australia 13=20th March. See here for more information:

http://www.coeliac.org.au/