Saturday, February 04, 2012

The Verdict

We are pretty sure Kaylee aspirated - inhaled some vomit and/or snot - which caused this lovely little infection.  It is possible that she did pick up a low grade upper respiratory infection (that is COLD to those of you who haven't had your minds warped by too much time in hospitals) before or after this aspiration, we can't really tell for sure.  The tests from her nose came back negative in spite of the copious quantities of thick, creamy SNOT we are suctioning out of there several times a day (hope you aren't eating dinner as you read this....or vanilla slice) but it is possible there was a virus in there still, just not one of the ones they tested for.

So, as usual, we know a bit - not everything - but enough to keep going.

The plan now is to get her lungs in tip top condition before her heart repair. 

To do this she needs to spend a little bit more time on oxygen and with IV drugs but we may be transferred back to Launceston kids ward for this.  I do not get as much rest there because I won't let the nurses touch her feed pump without direct supervision - the first night I was there I went to sleep and woke up to find 300ml of my breastmilk hanging in the feed bag when she was being fed at a rate of 21 ml per hour.  It is only meant to hang for a limited amount of time and nobody could tell me how or why or WHEN this happened so I had to discard 300 ml of breastmilk.  Not happy Jan.  I also had to discard another 500ml when I got there because it took me over an hour and a half to get someone to put it in the fridge - by which time it had been out of the fridge for over five hours and become useless.
*sigh*  I also have to chase almost every single medicine because they forget or get busy.  Last time we were there I had to record all of Kaylee's de-saturations by hand as the monitors there do not record and there was not enough staff for someone to sit and write down the numbers.  I'm afraid I was very spoilt with nurses trained for ICU or high dependency work and it takes some getting used to working with a ward that is as understaffed as that one and does not have a good understanding of Kaylee's condition or how to handle EBM and continuous feeds.

We will see how we go.

Kaylee had not had reflux since we settled in here and I decided to test a theory.  I sat her up this afternoon.  She loved it for the first five minutes and I got SMILES and COOS and LAUGHS!!!  And then bang, the reflux hit.  I don't know if it was simply being moved that brought it on or sitting up making her tube press the valve on her stomach and letting acid out.  Either one is a decent theory.  I don't know what to do with that one.  I can't just not move her for a few weeks! 

The other kids are all having fun with Nanny and Poppy and Dad.  They miss me but this is not as traumatic as the first time I came across unexpectedly.  Kaylee is not as sick and they are in Smithton .

It has been nice to catch up with some of my lovely Melbourne nurses.  I keep showing them photos of one of our old room mates who I have kept in touch with and they get very excited.  It is rare to be in a place where SO many people are brilliant at their job and genuinely seem to be dedicated to their work. I consider myself truly blessed.

The new hospital itself is amazing and I can't wait to bring the kids over here.  I am sleeping in with Kaylee COMFORTABLY!  How often can a parent say they are sleeping on a hospital ward comfortably?!  The whole place is designed beautifully.  I am comfortable and cool (until I go outside where it is humid and hot!) and the room is flooded with natural light in the day.  All over the hospital there are little places to sit and watch the kids play.  It is a truly wonderful place for sick kids and their parents.  If I could change one thing I would make the parents retreat room larger because there are times when your kid in ICU when you need to wait in there and if there are some large families in there, it would get crowded and uncomfortable.  But other than that, I really do love this place even if I do not love the reasons we are here.

Anyway, tonight I will be good.  I am going to bed EARLY.

I will update as I get information.

Thanks all for your prayers and encouragement!

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