Sunday, October 17, 2010

Gotta Love It

'Gotta love it' - the sarcastic name of the photo album on my Facebook page containing all the photos of Jessica's allergies, hospital stays etc. Well, not quite all, MRSA got two albums all of its own! There is one other too, 'The Not So Pretty'. I was only prompted to share those kinds of photos with my Facebook friends when a dear friend from Anaphalaxis Talk was having MRSA trouble with her own child.

Is it wrong to tell you how fed up I am with our lot in life? Of course. You're supposed to be all smiley and when someone asks how you are the polite answer is "well thanks, and you?". If you told them you feel like you have the weight of the world on your shoulders and the kid is sick and you just want to go to bed and never get out they'd probably have you committed!

I feel like that a lot. Completely overwhelmed and unimpressed with everything. Sometimes I have to remind myself that something that just happened was good, be happy, be grateful. I had a long phone call with my sister yesterday which put me in a real funk and I couldn't even concentrate on a DVD last night. She's getting married in 2011 and was asking me if I could replicate some invites she'd seen. Well, I haven't seen them so who knows? (I'm actually thinking the "gift card holder" my Cricut can make, pictured with a tulip printed paper a few posts ago would be nice, but in her colour scheme of course.), she actually asked me to do the bridesmaids and flower girls hair (you guessed it, I am not a bridesmaid!). Hair. Me? No. Spend close-knit-lovey-dovey time with her friends? Hell no! She went on to say they're going to try borrow some $18,000 to pay for this whole affair. Really? That's more than my annual income. Yet they're only going to have 40 or so guests? What the hell do they need $18,000 for??? Ok, so when she found a dress in a Salvation Army store she just loved her fiancĂ© told her she had to spend $2,500 minimum on her dress or "not to bother". Say WHAT? These two live well beyond their means at the best of times. I think I've heard all I want to about this wedding, and right at this moment I am glad it's not until the end of 2011 because I feel so.. ? I'm not sure. Hurt. Jealous. Angry (try explaining 'proof book' to my sister, you will understand the frustration.).

Then this afternoon my baby comes home sick (from nanna's house). Again. She's all teary and miserable because she has conjunctivitis (pink eye to my American friends) as well as hay fever. It got me to thinking about all the things she's had to deal with in her short life. She isn't yet 8, after all. I also began to acknowledge how little I document of her ordeals. I have photos gallore, but I really need to talk more about it all, and the struggles that go along with. I am not the only mum out there with a 'sickly' child. I am fed-the-hell-up of having people think I am over reactive and that "at least she doesn't have Downs [Syndrome]". Right.. like the trials I have with Jessica mean nothing because you can't physically see all the suffering she endures? She is set to miss another 3 days of school with this conjunctivitis, likely bought on by her hay fever. Too much crap in her eyes over too long. I tell the nurse on arrival at the Emergency that she has latex allergy. When she went to inspect the eye she went to put on gloves and I had to ask "are they latex free?". Nope.

I have nearly lost my daughter to death, twice. By that age of 7! Don't be telling me I have nothing to be so fussy about. One was to MRSA, the 2nd to an anaphylaxis allergic reaction to chocolate. Thank goodness for the Epipen and a paediatrician who believed there really was something wrong.

During pregnancy I had placenta previa and had all kinds of warnings like not to chop firewood, hang laundry, lift anything heavy. I also had 22.5weeks of all day every day sickness (who named it morning sickness?!). When my waters broke they were almost fluro green. After she was born and they stitched me up they had to take me back in and drain my bladder to control the bleeding.

My mum left the hospital the morning after she was born because of Jessi's dad's abusive and controlling behaviour. My mum wouldn't even look at me, or say goodbye to Jess. We left the hospital on day 2, even though I could barely stand up I was so dizzy all the time all because he wanted to. The doctor put the worst fear in me that she might get jaundice if we left so soon. I walked around for 2 days seeing my baby as bright yellow!

My daughter is fully immunised.

About 2 weeks old she got conjunctivitis.
7 weeks, my 21st birthday
At roughly 3mths old the eczema began. It was on her cheeks and was so nasty. I, no word of a lie, had a complete stranger ask me outside the supermarket if I poured boiling water on her? I have so few photos of her as a baby. Subconsciously I couldn't see past the eczema and it resulted in not so many photos. People kept telling me eczema was stress related. Didn't I feel grand!

Roughly 6mths
7 or eight months
A 'well meaning' child health nurse suggested we relax on solids to help her eczema. She started having a lot of rice cereal and I had problems feeding her from then on.

She stopped breast feeding around 6mths old, by choice. I guess the stress really did get to her then. Also saw a dermatologist who visited the country in regards to eczema. Walked into his office and he asked what he could do for us. We said "we believe our daughter has eczema.." and his response almost floored me. "what do you want me to do about it?" he asked. Wow. He spent so much time trying to take photos of her cheeks for his website that all he did was write a prescription for steroid cream. Same as our family dr.
Roughly 6mths

About 26mths of age they finally diagnosed asthma. Treated asthma and the vomiting eased.

At some point along the way she had an admission to Kalgoorlie hospital for "investigation". They did a barium swallow and an ultra sound to see that all was ok and working properly in the swallowing and vomiting processes. They ushered us out of there pretty quick because they were busy with flu season.

She'd often vomit massive amounts, until her stomach was empty and she'd still be retching. Sometimes it was like power-chuck! I'd call nanna crying because I needed a shower, Jess needed a bath. There'd be spew everywhere. I saw our family doctor so many times. They said she had reflux and prescribed medication to suit. I never, ever gave it to her. I didn't think that was the cause at all. I also kept telling the dr about this vomiting and she'd just listen and say it was normal for babies to spew. I'd babysat since I was 12, I knew babies. This wasn't normal. About 10mths down the track she weighed her and realised she'd be losing ground in her growth charts, actually going backward! We were rushed off to PMH. Jessica was diagnosed as having 'Failure to thrive'. BEST mother moment. EVER. Not. She was started on supplementary milk drinks and polyjoule. They listened to the vomiting issues and gave her the very first lot of RAST tests for allergies. She was positive to egg and potato, tree nuts among environmentals. I queried sesame which they had no result for. Was told to remove egg and potato from her diet to see how her eczema went.

About 26mths of age the finally diagnosed asthma. Treated asthma and the vomiting eased. She had chronic constipation until about 4yrs old and took daily laxatives. It was painful to watch and no one seemed to care. Just take the laxatives.

I don't recall how many admissions she had to PMH in those first few years. It was at least 4. No one ever said anything much about her skin, they queried asthma a couple of times. They were focused on trying to get her to eat. They did start us on wet wraps for eczema. That was grueling and she hated it. I had to walk the halls with her in a stroller the whole time she was in one.

Early age 5 they diagnosed latex allergy via skin prick testing after she had a massive lip swelling reaction to a balloon at age 4. I had to push our family doctor before he finally referred us to an Allergist who reconfirmed tree nut allergy and confirmed sesame for the first time. Latex, tree nut and sesame are all anaphylaxis/life threatening allergies. We already knew about egg and potato, and environmental things like grass, animals, dust. She petted a friend's dog once and her entire face swelled like a balloon. Her eyes swelling completely closed. Treated allergies and the vomiting made a whole lot more sense! .

Age 5 was the MRSA. I had to buy her a stroller because her skin was so bad she could barely walk. I kept telling or family dr something wasn't right, this isn't her normal eczema. He didn't believe me.

Then she got burnt with her antibacterial bath oil. It was so horrible!!!!!!!

Finally got MRSA diagnosed, 2 weeks in Perth at PMH. Back for an 8 week check up and readmitted. Started huge doses of oral antibiotics, which lasted some years. Every time we stopped she break out in infection again. MRSA saw us make contact with our dermatologist, who we now see regularly. This dermatologist started her on immunosuppression therapy, using the drug Cyclosporin, to help control her eczema. Immunosuppression is used for people who are having transplants so their body is less likely to reject the new organ. Has some wicked side effects like kidney failure. Spent weeks super stressed and badly worried every time she had a cough or snotty nose. All I could think was pneumonia.

Cyclosporin didn't work too well so they switched to Azathiprine (Imuran) and she's doing much better. It has other side effects, like the warts on her hands and face, the ring worm. The fact she missed a month of grade 1 when whooping cough was going around and she was too susceptible with a weakened immune system to be near people who had it/contact with it. Her immunisation had to cease as live cultures are used and injecting something live into her with a weakened immune was more likely to give her the disease than prevent it. She isn't allowed to get sunburnt because the drugs can cause her to be more likely to develop melanoma.

She's been under general anesthetic twice. First for an endoscopy and the second for dental surgery. Our school dentist wouldn't touch her in case he had latex in his van (they visit in a kitted out caravan, school is too small for on site dentist). He diagnosed her and she was sent away for crowns, fillings and removals. All on baby teeth. She was six.

I can't count the number of hospitalisations she's had for asthma and eczema. We see our dermatologists in Perth every 8 weeks. It's some 16hr return trip. She's currently taking 4 tablets, 2 inhalers, 1 nasal spray, various creams daily, and you can often add antihistamine to that list. She has bleach baths twice a week and a bloody test once a month. Her clothes can only be washed in 1 brand of laundry powder. She still can't interact with most animals. Her linen needs washing a lot. All our linen has blood stains. She is still extremely uncomfortable in some kinds of clothing. She is still prone to infection. She is limited by shoes, clothes, toys and various other things due to latex allergy. She can't even wear a bandaid. She has a lot of broken sleep. She often gets a fat lip just from eating white bread. Cross contamination of sesame seed. She's seen doctors, pediatricians, ENTs, dietitians, dermatologists, allergists, immunologists, pediatric dentists, psychologists. She still hardly eats. She's spent far too much time resembling a mummy (of the bandaged variety). She puts bandages on all her dolls. Her hospital files at PMH and our local hospital is over 2inches thick. She sits on a 'sitting mat' at school to keep her off the carpet/grass. She has a teachers aid. She is still missing massive amounts of school, and starting to really notice how 'different' she is.
She cries "I don't want to do this anymore".
"The only thing I am good at is itching".
"I wish I didn't have allergies".
"How come other people don't have eczema?". (remembering we live in a really small town)
"It's all my fault. Everything is my fault".

I want a little girl who could live pain free. Who can pet a dog and eat whatever she wants. Who can grow into a young lady without fear of condoms, shampoo, make up. I want my daughter to be 'normal', and it's selfish of me. She is who she is and I can't change it. Oh how I know I can't change it. I'd have a thousand times over if I could. Besides all the regular childhood illness like colds n flus, chicken pox. I don't think it's fair any child should need so many needles poked into them. I've had to hold Jessi down for blood tests. Once, with 2 nurses and myself holding her down the doctor was still unable to draw any blood. She was only 3!

You tell me if you think it's fair for ANY child to suffer. You tell me if you still think my concern for my daughter is all in my head? You still don't know the half of it. Go on, tell me "it will all get better" just one. more. time. I dare you.

You tell me if this looks like anything you've seen a child endure (but of course you haven't, because they're at home or in hospital when this bad, so you think eczema, asthma and allergies are a piece of cake!)....





I lost all the photos I had saved on a thumbdrive, there were hundreds more like these, including those of her struggling to breath with oxygen masks on.

Yes, I realise my tone throughout this past was angry. It makes me angry that my little girl has to endure all this. That I can't help her. That people are so heartless about it.


Anonymous said...

I came across your blog whilst searching for a simplicity pattern for American girl dolls...having just read this post I am so deeply sorry for both your daughter and for you. I have two little girls, 6 and 2 and I can only imagine how you must feel having to watch her suffer. Has her condition improved? I am wondering if there is any way I can help you guys out. My husband is a doctor here in Melbourne, maybe theres something that can be done??? She is a very beautiful little girl and I hope that some relief comes her way soon.