Sunday, July 13, 2008

TLC for Kids

an organisation that visited us yesterday, its a little bit like make a wish, but for kids in our position, with long hospital stays ahead of them, far from home and with alot of visits back to the hospital.
anyway the lovely care nurse referred our family to TLC. Friday at 2pm, my children were spoilt beyond belief. They both received portable dvd players, emily received 12 tv dvds, which is all she wants to watch atm, and a bag of craft materials. Lilly received a few dvds for her player, and the biggest bag of keep me entertained craft materials u could imagine! I do have a photo of emily sitting up in bed looking at her goodies, and i will come back and share it as soon as i have my usb stick here to bring it over. she looked at me and kept saying WOW. It was amazing.

emily was back to the OR yesterday, for another clean and check of her site, all is looking a little better again. We still have another 1 or 2 of these to go before they entertain the thought of the final surgery, they need to make sure they have gotten rid of everything that will die and to also give everything a chance to survive thats going too. Its a long road and its taking its toll. I had a major melt down last night. I really feel like i never have enough information, but when im being told the information it feels like the questions r answered. until later that is. This surgery when they recast her arm it didnt go up high enough and in the middle of the night while she was in pain and thrashing around in the bed i freaked out because we were told above her elbow was another small fracture, all her casts until now covered this....yesterday it didnt, at first i didnt really notice it as she was asleep and not really moving around. later on it was a huge issue to me, why didnt it cover her top break??? i had to be taken from the ward to calm down, i was in tears and a basic mess...i worried all night and most of the morning, kept asking, recieved minimal answers, until finally someone ordered yesterdays OR xrays be sent up...doesnt look like there is a break above the elbow....why the F*&K didnt they tell me that!!!!!!!! it would of saved everyone a whole lot of pain and suffering last night. i think we r all a little over it!

my mum goes home tonight, so i am swapping with daniel tonight so i can spend some time with lilly before my dad takes her back home for a few days so she can go to preschool on wednesday and do a few normal things. I dont know how to thank my mum who jumped a flight monday night from townsville, to be with us before emily was out of her first surgery, and has stepped up for me in every way. Thankyou just doesnt seem to cut it. My dad is currently driving with my step mother through the countryside to us to spend the next little while with us. I dont know what i would do without any of you! Travel safely

daniel is back today too....so looking forward to seeing him.

as of yesterday the plan for emily is too
monday surgery, recheck clean and redress her arm
followed by what we hope to be the last one of those a few days later
which will lead us to the end of the week.
maybe before the weekend or the following monday 2 weeks after all this happened they will start the initial reconstructive work, with a graft and flap created for her arm. we will then have a week in hospital after this. for recovery. she will go home with a pressure suit on her arm. and we will be back a few weeks after that to look at the breaks and make sure they healed. and to work on the next part of the plan...muscles and making the skin on her arm look as normal as it is possible. all of this is going to blow out to be YEARS, they tell me, but the breaks between surgery will be a long time.

if anyone wants to contact me personally
djon7593@bigpond.net.au
i am checking it pretty much daily again.

4 comments:

Chris Millar said...

Hi Jac, sounds like it was a very frustrating night. Glad they finally communicated with you in the end. It's a tough road for you guys at the moment and your family are doing a wonderful job of supporting you. Wish there was more I could do from this end. Let me know anytime you want to chat and I'll call again.
Glad the girls were spoilt and I hope those DVD players keep them entertained, especially Miss Em while she can't move around much.
Hugs!

kirstypiper said...

(((((((((((hugs))))))))))))

I so wish i could come down and help out, just feeling very helpless :-(

Might try and give you a call again during the week.

You really are doing SO well. I would have flipped out several times and I don't think I could be as strong as you are...

Love yas!!!!

Remember I am here ANY time, day or night

Natti said...

Just letting you know you guys are in my prayers Jac. Thanks for the updates too.

Tracy Tunney said...

Hi Jac,
Thanks for keeping us all up to date with Emily's progress. You are doing so well to make the time to do this. I'm glad it helps u sort out your thoughts as well. Sounds like a frustrating time at the moment. Wish there was more I could do for you :( so glad TLC has spoilt the girls so much - they deserve it. Your family are doing a fab job of supporting u. Enjoy the time with Lilly! Will keep checking on u guys.
Much love and hugs,
Tracy