ramblings while in the air

So right now we on on the plane to Cleveland. Lately I am so mixed emotion. I am grateful that k is here. On the same token this is nuts. I question on a more frequently basis how can I do this? I see no end in sight. Is this the way it will be for the rest of her/our life? I remember thinking the other day I did not sign up for this. I wanted to be a mom that's it. However God has kindly reminded me just bc you have a child does not mean they are going to be "perfect" I mean who is anyways. So I guess I just gotta throw my temper tantrum n keep on going. And people please spare me I know others have it worse. I am reminded all the time.
So last night I was in a serious funk. I felt like I am not good enough. But this morning. I know I am. I can't let people get to me.
I am planning on some serious lifestyle changes. I have gained 40# since k diagnosis in Aug of 09. I turn to food a lot when I get bad news. I can't take care of my child if I am not taking care of myself. Just won't happen. So I have decided I need the support to help me go to the gym n eat better.
Also if people want to say hateful stuff they can go jump in the ocean.
I am doing the best that I know how and can.

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Beware its a late night post and we are in the hossy!

Good morning. It is 0125 here. I am kindly waiting for the attending to come up and visit with me about ms kenadie. So lets do some backtracking and let me catch you guys up.:) So we finally got to go home from duke usa and came home dec 2. Got home and got some mrsa in our stoma. Thank God it did not migrate to her incisions. I am pretty sure I would have passed right now. During this time frame she had a night where she had 168 alarms yes you read that right 168. So i had a nice talk with dr b about this occasion. Ms K and the girls had a great Christmas. I swear santa was too nice thanks to quite a few friends and family members. New year rolls around. Since about september k has been fighting strep on and off. Since coming back from duke we have had it 3 times. Since september 10 times. So January was filled with seeing the ent for her tumor in her throat which is a lymphatic hyrgroma. (p.s. dont google) So ent dr g said tonsils must come out. So we scheduled that for 2/8/11. Btw in the mean time of this i passed my mental health rotations and made a 91% overall on it. So yay me. Well lets move to february. So it has been a hell month. Sorry but it has. We went to Duke jan 26th. well we get there and as usual her body decides to throw hell at us. she had 350 cc of residual in the abdomen all three nights we were there. I called dr b he told me give her miralax and lets go from there. So i did. Nothing. Come home the nurse does not listen to me and make no progress. Sunday night early monday alexus starts vomiting. Great this is not good for k. Monday the 31st k starts vomiting and cant stop. Tuesday I need to take her to the hossy but can't blizzard. So i give zofran and wait it out. She does better. Wednesday same saga. Thursday enough sun out to melt me a pathway I take her to the ER. The tube has coiled in her abdomen and she gets a new one placed. Not in the correct spot but yes placed. Friday vomiting still. Saturday I take her back. Which is where we have been till now. She got a simple 24 hr tummy bug and it shut her system completely down. So we have waited.Saturday night they placed an iv and did some blood work and cathed k 8 times. yes 8. She is torn up bad and they still did not get it. She is a bit abnormal in the urethra area. As i told them and they did not listen. So Sunday rolls around and I notice her breathing funky in the evening time. I with my great nursing education check her over while waiting for a nurse to answer the call light and see that her arm is two times the size and swollen black and blue. I ran down to the desk and told them. They came in. The iv infiltrated her and burned her 2nd to 3rd degree burns. I am livid!!!!
Well she continues to vomit I convince them to look at another xray and what do you know she is full of feces and it is partially blocking the intestines. So she gets to start enemas. After two of those and no luck we move to golytely. We were on it yesterday most of the day and nothing. Then her iv fell out. After 5 attempts i said no more. Not going to let them stick her like a pin cushion. So they ran a pedialyte drip through the tube. Today moved back to golytely and then pedialyte at night. We finally had two small bm's. Tomrrow they will decide if she gets a picc line to see if she needs the hydration and where her nutrition status is sitting at.
Tonight I was sitting here on my lovely laptop noticing the alarms going off for a 3rd night in a row. Hmm that should not be happening. So I told the nurse. Looks like the infiltration that ms k had affected her pacemaker. You better believe i am HOT! not pretty hot either. lol.
I am thinking if it were not for bad luck I would not have any at all.