Saturday, February 18, 2012

Update and the voices in my head again..

We are all home and it is all good.  Waiting now for a phone call to tell us what date Kaylee will have her surgery.  It has been pushed back to March to give her time to recover fully from her little infection.  I think what happened is (WARNING: TMI, gross bodily fluid talk) as Kaylee vomits it irritates the inside of her nose and makes her nose snotty and that actually runs down her cleft into her stomach which makes her reflux worse which makes her vomit more which irritates her nose more and we get into an incredibly gross spiral of snot and vomit.  I think that she had a big vomit and it hit her snotty nose and bounced back into her lungs causing aspiration.  She has pretty much recovered from that now but I am doing everything I can to interrupt any snot-vomit spirals.  I am still not loving her sats and it is taking a big adjustment for me to learn that where she is now is OK because if she had been like this 3 months ago it would have been cause for concern.  But she is growing out of her shunt and needs her full repair and we are best to wait a little while to make sure she is as strong as she can be.  It is not a small heart surgery and while it does have a high success rate she needs all things possible in her favour.

One thing I have learned while at the Children's Hospital is there is always someone whose situation puts your own into perspective.  I met a lovely Mum whose son had just had some holes in his heart repaired.  As I talked to her she told me that her first and second sons were "heart kids" too.  Her first boy was born with hypoplastic left heart syndrome.  This is a pretty severe condition - perhaps the trickiest of all heart defects to fix - and after his first surgery he got a clot in his shunt.  They had closed him up and it took 40 minutes to get blood flowing through his shunt again, by which time he was brain dead.  They turned off the machines when he was three days old.  Then she had another son with the same condition - hypoplastic left heart syndrome.  He has just had his third surgery and is doing well however he will always be a heart patient.  So all her three sons were born with heart issues, two extremely severe and one has passed away.  As we were talking over cake she was saying to me "Wow!  You mean your daughter is on a feed pump all the time?  That must be hard!  Wow, I can only imagine what you go through with that."  I love her a little bit.

What I do is undeniably hard.  I have these two parts of my brain, Drama Brain and Logic Brain.  Drama Brain sees a small red patch on Kaylee's leg and screams "Oh nooooooo, she has one of those horrible flesh eating staph infections that  is going to eat her leg OFF!!!!   This is what comes from being in hospital so much.  Curse you flesh eating staph infection, curse you to Hades!!!!" Logic Brain says "Looks like a bit of excema, probably from the blood pressure cuff being left on overnight.  Put some coconut oil on it and watch it."  I make up Kaylee's medicines every day and Drama Brain screams "Do you REALISE that if you get this consistently wrong the best case scenario is that your child suffers awful pain and the worst case scenario is she DIES and it is all your fault?"  and Logic Brain says "...Yeah, what she said.  Don't screw this up."  You know you're in a stressful place when Drama Brain and Logic Brain are on the same page.

However I know that there are thousands of mothers who would love to have this stress.  Who would love to have medicines to help their child's body work.  Who would love to still have their child.  And it puts my stuff in perspective.


Momma Bug said...

And at least one momma who appreciates what you're doing there without having to experience any of that drama.
Or the logistics.

I'm praying for you friend.

mummabeen said...

Jess, I'm not sure if you remember me at all, but I've kept your blog bookmarked all these years and check in with you and your beautiful family from time to time. I'm deeply moved by Kaylee's journey and want to send you and her all my love and many many positive and healing thoughts for what lays ahead for you all.
With Love, Beenie (Elissa in Melbourne, mumma to Rowan and Imogen) xxxx

Jess said...

Thanks Analene.

Elissa, yes I do remember you! How are you and your beautiful bubbas? Although I suppose they are both big school kids now!