|FIRST G-TUBE FEED WITH NURSE AND GRUMPY KID|
Something to be happy about was - we were able to jump the stated 48 hr post op wait to start the G-Tube feed. I can't imagine if we'd gone for another surgery and all of this would have happened and we'd not been able to feed her or medicate her orally.
This whole elective surgery was for this exact reason. We know it was a matter of time before something really horrible happened in the upper GI tract and a vicious catch 22 would happen. We can now rest somewhat easy that the G-Tube is to be her life line. As well we can now avoid nearly all sucking action of her bottle feeds.
|LAST EVENING IN HOSPITAL|
I was on the edge of a rage that blinds my rationality and makes my personality slightly caustic. Slightly, so I'm told.
haha nervous laughter..
Raquel was also on the edge and I managed to get Dammit Janet and Gabi pissed at me.
At least they left the change room wounded after a couple sharp words. I had to though. We were set up in a small cluttered box with tonnes of medical equipment for helping poor kids in a way worse way then we were in. We had no window making the confines amplify Raquel's angry cries. Every time we laid her back she'd go ballistic pushing herself all around, making it difficult to keep up to where her hands and legs were from my pre-cut tray. Again something to do with her throat. Not sure how being horizontal aggravated it. Adding more bodies in such a small room would have been difficult. As well Simona and Janet in the same room with me while I'm stressed? Forget about it. They'd be all over me for things that got nothing to do with the situation at hand. Which of course would make the situation that much more unbearable. I can handle them if Raquel is in her tranquil state. In fact it's fun that banter, but under no circumstance will they be allowed to be in a space where I'm already struggling to keep it together.
The nurse from the unit was a great first time helper and got a good idea what the horrors of EB can be. She apparently is around for burn dressings for other kids so much of what she was doing had been done before. Just not holding a kid that's squirming where a wrong grip would result in massive skin trauma. She mentioned how similar some of Raquel's larger blisters (on her foot) looked like the skin had melted off. This nurse was also there for us in the first feed. I have to say she was attentive and intuitive to what had to be done and did a great job all the way through.
|THOSE WHO WERE LARGELY LEFT OUT OF THE RIGMAROLE|
|ESCAPING HOSPITAL TO FRIENDS HOUSE FOR AN HOUR|
|PLAYING ALREADY IN LATE AFTERNOON|
Yes that reminds me. I got my first "daddy!" as she pointed in disapproval at me for attempting to go out the door. She needs a bunch more words of vocabulary. Daddy don't go!
Although the eyes and the 'daddy' was enough to melt my heart and forget about where I was headed to spend a little more time with her.
|Still at Simona's playing Hospital Fugitive|