Massively overdue for an update so I'll be brief. A zillion things have been happening but the key points are these:
Chelsea's breathing tube was taken out {did I write that already?], then her CPAP tube followed the next day.
Her arterial & central lines were taken out. A peripheral line was put in but has since been taken out - no IV drugs whatsoever!!!! All oral now which means easy to come home!!
She's still on .2 oxygen and they hope that'll be weaned today/tomorrow.
She was transferred to the ward a couple of days ago and I have been staying in a foldout bed next to her overnight, doing all her feeds etc. She is mostly bottling, the occasional bit going down the tube [nasal gastric].
She started smiling yesterday but today she is quite grizzly. I think she is getting ready to come home. I think she is missing everyone and sick of all the prodding and interference. There comes a time when most of the care can be done in the comfort of your own home and I think she is getting close. We can home with the NG tube but we really need oxygen off and her saturation levels stable at 95+. And she's only marginally below when off the oxygen and 100 with the .2, so we are close.
Here's some pics of her before and recently. We have come a very very long way. We realised yesterday just how lucky how we were being told of another family who lost their 1yo yesterday. Tragic, absolutely no words can express how devastated we are for them and how blessed we feel and how close we came, with all her difficulty following bypass.
We were on A Current Affair last week. A feature story on Paediatric nursing and we happened to be in the ward where they were filming. They asked me a few questions and I was reduced to a blubbering mess. Aaaghhhhh!!!!!!!!!
Anyway, thats all for now. Minutes spare are a rarity as Chels needs at her bedside more and more.
Kate & Co.
xo
edited: transferred from Heartkids family blog to KateMason.blogs.com August2011
