Who emails a Hematologist at 347am.....? Me.

Max has ITP

I = idiopathic (meaning 'of unknown cause). Sometimes the 'I' stands for 'immune' as findings show that ITP patients have autoimmune antibodies in their blood.

T = thrombocytopenia (Meaning 'decreased number of platelets')
*platelets form clots that stop bleeding

P= purpura ('purpura' refers to the purplish, reddish skin rash, caused by the leakage of blood from broken capillaries into the skin)


It's been niggling me for awhile that we hadn't seen the last of Mr ITP. There's been an even more annoying niggle, that it wasn't even ITP to begin with. I think his actual diagnosis was/is 'Refractory ITP- by exclusion'. Meaning, that every other test, had ruled out every other illness that they could think of. The term 'refractory' means 'we have no idea how to treat this stubborn kid and his stubborn platelets' (don't quote me).




Platelets





It's rare for a person to have a spontaneous bleed, when they have ITP. Max did.

There's a few things that have never quite added up about the diagnosis of ITP. Firstly, it is extremely rare in babies his age. Secondly, ITP normally occurs after a virus of some sort and he never had a virus.

It's been debated whether his immune system was activated by his vaccinations. But they were given 4 weeks prior, so it's a long shot.

There's also been longstanding 'issues' with his neutrophils. 'Issues' that I wasn't even aware of until we had an appointment with a different Hematologist. I thought that his neutrophils were wiped by his treatment but nooooo. The treatment actually knocked out, some shady characters called B cells and T cells.

His neutrophils have been inexplicably low for months. They've fluctuated between "ok but could be better" and "any lower and he'd be hospitalized".

This could possibly mean-
(a) Nothing
(b) He has a different illness, that's even more rare.
(c) Cancer of some sort
(d) Who the hell knows?

His most recent blood test, showed that the B cells and T cells are recovering, but his platelets have dropped. They aren't low, but the drop was big.

The whole scenario leaves me with some kinda unnerving questions that no one can answer. Why was he so damn hard to treat? Why did he even have a condition so rare in babies? How was his immune system activated in the first place? How sure are you that he had ITP?.

The niggles are moving closer towards the forefront of my mind and I sense that a Hematological storm may be brewing. I hope I'm wrong.





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I don't think we're in Kansas anymore Toto

No mother likes to hear her baby cry. I read once, that the babies cry was 'designed' to cause discomfort to his/her parents, so that babies needs were met. When Max was born, I was totally floored by the anxiety that his crying evoked in me. Nifty little trick there 'Mr Evolution'.




Though, one time I just had to pause for a moment and take this photo

When Max had his immunizations, he cried and then I cried because he cried.

Now that he's older, I can handle the sobs, the grizzles and fake-out cry. But the one cry, that still makes me anxious as hell is the "I'm in pain mummy, makeitstop NOW" cry. Max is doing a LOT of teething lately and there's been lots of pain cries. Pain cries, that put giant chinks in mummy's armour.

There's been no shortage of pain related cries in Max's life. I could write a whole post about the things he's been through, that I'd rather forget. But, dedicating an entire post to that would be kinda depressing. Instead, I
want to, need to, talk about one particular moment.

June 2nd, 2011, Max and I arrived at the Hospital. By the time we arrived, he was unconscious, floppy and barely breathing. Yet, I was strangely calm. When the nurse, called in the 'resus' team, I totally believed her, when she said "we always do that".

Have you ever seen those cartoons where, a tiny car pulls up and a gazillion clowns tumble out? That's the best way that I can describe the scene that followed. Nurses and doctors came running from every direction. They stripped off his clothes and he didn't cry. He always cried when he was undressed. I honestly thought, 'he'll wake up soon, giggle and we'll go home'.

Nurses/Doctors kept running to me, asking various questions and then scampering off again. Then a nurse gave me a glass of water, patted my back and stood with me. She was the Unit Manager of the E.D. My initial thought was 'oh crap, this is serious. Unit Managers don't give out glasses of water, unless it's serious. That thought was quickly replaced by 'The Children's Hospital has better funding, so the Unit Managers have more time to dish out water'.

When I was told "he'll be in at least overnight", "intubated" and "intensive care". I thought 'gee, they sure do overreact around here'.

Then, they told me that they were struggling to get IV access & needed to insert an Intraosseous line. An IO is a line that goes directly into the bone marrow (Anyone interested in learning more, can read about it here http://emedicine.medscape.com/article/940993-overview#a1)

They told me that maybe I should leave the room, as it could be distressing for parents. I wanted to stay (how bad could it be? FFS, I'm a nurse). They assured me that he was sedated and wouldn't feel a thing. Meanwhile
calm,, deluded mummy thought "wow, there's so much I don't know about pediatrics".

And then, it happened. What has now become definitively, the most horrible moment of my life. A drill, (sort of like a dentists drill), went straight into his shin. The piercing, shrill cry of my baby in so much pain that I couldn't begin to understand. The shrill cries that were muffled by the oxygen mask, covering half his face.

There's not a single word in the English language to describe the pain I felt at that moment. Alone, in a room totally full of people. Powerless and afraid. The reason, I still fear the 'pain cry'. The moment I realized life was about to become a whole lot different. We weren't in Kansas anymore.

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Angry Mumma vs Centerlink

Do you know how hard it is to get a Carers payment from Centerlink? I do. We've applied twice and have been rejected both times.

With the first application, it took 6 bloody weeks for them to decide that we weren't eligible. But they were kind enough to grant Max a Health Care Card (bless you Centerlink).

The second time, we provided a support letter from our pediatrician. Another 6 weeks later, we were again unsuccessful but granted 'carers allowance' instead- about $100 a fortnight.

The reason we keep getting rejected, is simple. Max doesn't 'tick enough boxes' on their questionnaire. Boxes that are completely irrelevant for a baby, because all babies require full time care. Fair call I suppose. But do all babies have cerebral palsy? Do all babies have a therapy regime comparable to an Olympians training schedule. Do all babies have brain damage as significant as Max?

We were told to apply again when he got a bit older. Apply again? No, I will not apply again when he gets older. Nor, will I re-apply again now. Because this Mumma is angry. This Mumma has launched an appeal instead.

After a little bit of research, I have discovered the importance of semantics (thank you Welfare Rights dot com). I have to prove that my son has a condition, be it medical or physical or behavioral or psychiatric, that requires care, roughly equivalent to a full days work. That is what the fuckin lovely tick boxes are designed to assess.

Do I provide care 'roughly equivalent' to a full days work? Abso-friggin-lutely. Centerlink, I provide full care for my baby, as well as being his full time therapist. Our whole day, is structured around OT/PT/sensory intergration/language development/massage/stretching and medical appointments. 'Roughly equivalent to a full days work?". I crap all over your 'full days' work Mr Centerlink.

So.....the appeal has been launched. Our wonderful 'therapy team' are providing supporting reports this time. Three 'semantically correct' reports that will hopefully, get us over the line.

If this appeal isn't successful, then I'll appeal at the next level. I'll be contacting local members of parliament. I'll be harassing the shit out of whoever is the federal minister responsible for disability reform. I'll be harassing the shadow minister as well.

I'm not a welfare scam, I've always had a strong work ethic, I just want to recieve what I am entitled to. Screw your semantics Centerlink Mark my words, I will be granted carers payment and I will be getting back pay.


Now, to end on a positive note....


















Love you Max xxx

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Farewell 2011, you were nothing like I expected

Look at the pregnant woman on the cover of this book. I've never seen a heavily pregnant woman look so happy, so small breasted and so god damn smug. Right from the very beginning The Books Lie. Well.....maybe they don't lie completely, maybe I just glossed over words like 'rare' and 'unlikely'. Perhaps, I deluded myself that I would look as content as Miss Smuggy Pants on the front cover. Nope, I was a bloated whale, I couldn't sleep, restless legs were constant, I permanently had an itch down the middle of my back that I couldn't reach, everything exacerbated heartburn and I could barely walk 10 meters. I was a miserable, sweaty, angry woman.

The month of March bought along severe third trimester nausea & vomitting. I projectile vomitted all over the restrooms at Hungry Jacks. I vomitted at the Bingo hall, right in the middle of the 'jackpot round'. No sympathy with that one, there was a meat tray up for grabs. Eventually, I carried a blue plastic bucket everywhere I went.

On March 22nd, Max was born. After two failed epidurals, I felt every ounce of pain and have been left with chronic, severe, lower back pain. He was vacuumed out, my 'bits' tore all the way from Melbourne to Sydney and the doctor told me to 'shut up' when I screamed. Then, I sat for 6 hours, in 'post baby muck', unable to shower or eat/drink. All good though, because I had my precious little man.


(a few hours old)



And I adored him from the moment we met.






Now this is the book that truly lied. I carried it around with me religiously for the first few weeks of Max's life. It completely did my head in. Their breastfeeding advice didn't work. I actually read that section repeatedly, wondering what the hell I was missing. Their sleep advice didn't work. And the suggestion of twice daily 'sitz baths' was nothing short of comical. It took 3 months, before i could do 'number 2s' without screaming in pain (sorry, too much information). After a few weeks of feeling like I had the most abnormal baby in the world- I threw it against the wall.

The book never said anything about the fact that your baby can feed well, sleep well, act normally, have no temperature and still be on life support the next day. 'What to expect' didn't have a chapter on brain hemorrhages, seizures, medically induced coma's and 'effin rare auto immune disorders.

I'm actually not mad at the book itself (ok, maybe I am a little). I'm just saying that 2011, was not "what I expected". That's the nature of parenting and I've learnt it the hard way.

So, farewell 2011, you've taught me strength, you've taught me love and you've taught me to fight. You bought me happiness so pure, I don't have the words to describe it.
















Now, piss off 2011, I've had enough of your crap. Furthermore, I certainly won't be purchasing a copy of this....





Happy new years everyone. Wishing you all a spectacular 2012 xxx



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