In paitent stay is coming our way on monday!

So Monday morning we will check in the hossy.. Her pedi is needing to run some scans on her belly find out the "real" story. Since we found out the EGD was not done right. Stupid bas*ards! So as we know right now she will be in house for 1wk or so. It is going to be here in oklahoma at the hospital i prefer i guess. I dont really like the pedi care in oklahoma but hey i will take b over ou anyday! So I am really not looking forward to this. Her pedi says she needs to "document" her gagging when fed babyfood and needs to "document" her formula coming out of her stomach. I swear people I am not a mom to make up the stuff about my kid. She says this is what we have to do to get her down to baylor or wisconsin. So whatever. I am just not looking forward to this. We are detoxing her system right now. Not allowed to have ANY gi meds. So this is going to be one hell of a week. Then we will check in and the nurses will feed kenadie. I am just praying they see what we see at home 90% of the time. She better not decide to have her "good" days while she is there. They are also going to do a scan on her tummy to see exactly how big it is and if it is going to grow on its own. If it is delayed then they are going to put the other tube in. :( So here goes nothing! Pray for my sanity because i am going to need it!

The diva's update

Hello all.. So life here has been very interesting. The diva decided to have a severe bluing spell on me on Tuesday. We took the girls swimming and as i was getting her ready.. totally blue and purple. She was alert but lathargic. It scared me just a touch. But we always have the rescue O2 with us in the van. So 4liters of flow by and bam she was good. Scared the crap out of the people at the pool but eh whatever. Then folks were getting a good chat about her tube. Seriously people you have seen her button.. She is not a display or anything to sit there and talk about. I almost threw this snobby lady in the pool. She was like eh what is that?! You should cover that up! Umm lady.. you need to cover your body up.. no one like that should be in a two piece. My poor hb was like come on alisha.. dont mind them. She is a baby really dont point and laugh.
So on to other news.. We are going to Wisconsin. We dont have our date yet but I got our packet and filling it out. We are just waiting on the nurse manager to call us and let us know. I am nervous as this is our last straw before the gj tube. We are headed down to dallas on july 24th also. We will be seeing our cardi and the gi down there also.
I personally need some prayers. I am confused as what to do with my professional life. I am trying to decide if i should continue to work. It soon may not be a choice as my boss has let me know that if i can't be there like i should then i will be let go. It is hard to deal with. But then again.. how do we afford this or that. kwim.

An update our rollercoaster!

hello all. sorry i have been the world's worst blogger. but here coming up soon you are going to be like does she ever shut up! lol. if we get put in wisconsin.. then my computer and school work will consume me! :)

So.. what to say first. K is stable. Weight not gaining but maintaining. We need her to gain just a smidge more so we can lose some of it when we do our feeding therapy session. We have not been offically accepted anywhere yet. Everyone keeps saying oh she is too young. But we keep facing roadblocks. She is having a ton of problems with her motility now. (not pooping) Then her fluid just pours out of her stomach. So now the pedi is talking about putting a GJ tube in (more invasive). I really dont want to go this route. I want her to be able to stay with the G if we have to have one at all. Her pedi did tell us to start coming to the realization that she may have to have one for the rest of her life. You know right now.. if that is all she has to deal with. Bring it on! I know it is not ideal but you know what none of this situation is ideal. And if a man can not love her with her tube.. then crap on them. She is a very beautiful baby. :)

We are also trying to get in to see peds cardi. All her cardi's keep going on vacay and stuff. So that makes it a lil difficult.

I just got a call from wisconsin while i was typing this. They are sending our info packet in the mail so we can fill it out and get our date to come! Crossing my fingers!