2010 December - Aria MacDonald

Apologies for my slightly crazed post this morning.  I did the night shift with Aria last night and did not cope well.  I also nearly treated you all to a 2nd crazed post about the insanity of ‘sleeping’ in hospital for both child and parent but had calmed down by lunchtime.  Still hatching a plan though- seriously, it’s nuts.

Anyway we have a treatment plan for Aria and we are happy and relieved.  Both pulmonary and Infectious Diseases (ID) were consulted this arvo.  All agree this puesdo bug is coming from her lungs into her blood.  It makes sense, we have never cultured it in her urine or seen it in her heart or liver plumbing and unlikely to be in her belly either inside or outside the intestine.  SO the plan is months of ABX nebulisers.   One month tobra 8 hourly and the next month calistin rinse, repeat 😉

We wanted this last admission but they were not keen because they didn’t want to use the last remaining drug and for the bug to morph against it and become fully fully resistant.  But since then ID has done further research and the studies indicate strongly that when the inhaled version of the drug was used the bug never morphed against it and it was still available for use IV.   YAY!  This is very good news.

Ok so having to do nebulisers every 8 hours for the next 3 months is less than exciting!  In fact it kinda sucks.  BUT at least it is a plan and a way to hopefully get this awful bacteria out of her lungs.

Aria is still not really herself today.  Pretty tired and dopey and not feeling great.  She gets really upset whenever someone comes into the room and we are not directly next to her (hence the bad night sleep)  Even if we are sitting maybe a metre away we get ‘mummy/daddy come here’ .  Which is pretty much all she says all day.  On paper she is looking better but in herself not so much.  Still getting nasty headaches too.

So the puesdomonas is back and in her blood.  It isn’t good news.  Everyone is still being very cool and relaxed about it.  Which is good.  But we need to find the source of where this is coming from.  Everyone thinks that it is her lungs and we agree.

The reality is is that we are dealing with a super bug and there is only so much longer we can fight with this bug before we run out of antibiotics to treat it with.  And we all know where that ends up.  Still I remember praying hard that God would spare Aria a second transplant if He didn’t intend to give her a decent crack at life afterward.  And He did.  So I guess I just have to trust that faith I have, that He will see her through this and that He has the power to fully overcome this bug.

On a positive note her intestine looked great from the scope the other day.  This intestine rocks.  I was a bit nervous heading down to the scope now I know what to look for.  But the Attending said it looked gorgeous.  We haven’t got the final results back, but I think the team have and in hospital no news is good news.

Aria is still having headaches and wasn’t herself yesterday.  Poor girl, it is a bit sucky for her.  Daddy and Ashie came to have dinner with us and she slept right through!

Hamish and I were supposed to head out for dinner on Friday to celebrate our anniversary.  Don’t think that is happening.  I sometimes wonder about God’s plan.  Sometimes I feel like there is a big stick constantly whacking away at our life.  I can’t lie and say the past 10 years have been easy and blissful.  Sometimes I really wish we had an easy life.

Anyway enough from me, it is early morning and I might see if Aria will let me catch some more ZZZs