Friday, May 1, 2009

Were Home!!!!

So yesterday I spent the first half of the day planning for our discharge. We got all new prescriptions that have no carbs and no sugar, got all supplies and equipment that we need, got all instructions of what to do if anything goes wrong, and then we got to go home. Baybe was real lethargic all day and as soon as we got home and put her in my bed she passed out for the whole night. That was sad leaving everyone at the hospital, oddly enough I will miss them all. Then I spent the whole night turning my room into a hospital room and medical supply closet pretty much, and determining all the things I will need to get to make this work. Got her hooked up to her food, gave her a poke and it was 73 which is perfect since its suposed to be in between 55-80. I checked her pee and she still has ketones. I gave her all of her meds.. Levocarnitine, vitamins and flouride, valporic acid, klonopin, topamax, and zantac. I dont think I know if Im suposed to put extra water in the formula or not, gota ask. I vented Baybes belly which means I hook up another tube to her belly hole and let any air come out that might make her uncomfortable. I have tried and so did nurses in hospital but no air has come out so I didnt know what it would be like if it did but last night for the first time I hooked it up and nothing so I pushed on her belly a little and it went bloop bloop bloop out the tube. So now i know and im glad i did it right then.








So I woke up this morning and went to start poking and checking pee and rolled Baybe onto her back and her eye is stuck shut and swollen. WHat the hell? I have no idea whats wrong but I flushed it with water and now gota call Docs again. I mixed up my first batch of Ketogenic formula myself and I defenetely need some more tools to make this go more smoothly. Like a funnel and a bowl with a pouring spot. The powder sticks to everything and has to be so exact. Overall everything is going good so far. I was so happy to be in my own bed and have all three of my kids home back to somewhat normal. Pump is clogging today again forget to say that it clogged last night like ten times. I think we might have to get switched to a different kind of pump because this sucks.








Next few days Im gona spend getting my home back to way I like it and taking care of all the things that have beem let go. Like the lawn omg the grass just started growing like crazy while we have been gone and I got a warning notice from my landlord. (anyone got a good lawnmower?) I gota get caught up on all my bills and get on housing to et me out of this two story house so that Baybe doesnt have to be stuck down in my bedroom all day. Its just too hard to carry her and all her stuff up the stairs and back down. We get her new pimped out stroller in a few months and it is basically like a wheelchair in everyway but it folds up like a stroller so that can fit it in my van. I will add a pic on this blog of her new stroller, her swollen eye, and how well her surgery spot and tube hole are healing, I am so impressed with how good it looks already. Im still afraid to let anything touch it but she has shown no signs of pain.