a mini update

Hello all. My life has offcially went crazy! So right now the diva is taking a much needed nap. Her papa came down for a few days and it was well needed. Since my last post we haven't gotten much done. She had a swallow study that was crap! Pooling by her vocal cords and something else. Oh and her jaw is weak.. ya think?! Then we went for scan on her stomache yesterday but could not do it because she had not digested the barium from the day before. So we have to come in on tuesday.

please forgive the short post.. i fell asleep typing in.

A diva update

Hello all. The diva is snuggle in her bed fast asleep right now. She's had a rough go the past couple days. Yesterday she decided vomitting was her cup of tea. Mind you she has had the surgery where that is NOT supposed to happen. So yes it freaked me out. It was while she was sleep and i heard her gasp and then bam.. ACK! I called the nurse who was no where to be fing found! ugh. I got her supervisor and got things taken care of. Then radiology calls and says can't do your scan tomorrow due to the camera broke. Well sh*t! Then she would not eat and then had a blow out. It was NOT our day at all. So today i took her to the GI nurse after she would not eat her breakfast. She says it anatomical that is what's wrong with her stoma.. which we figured out that. Did not take a rocket scientist. Then the hossy called us and says hey can you come in now. So we did. (We are at baylor her testing is at childrens of dallas) We get there and they tell us they are behind by 45 MINS! ACK! I had nothing to eat by then it was 230pm.. so i ran downstairs to get something to eat. Brought her back. She burped and choked. IT was nice. not. Then we waited and waited. Come 320pm i was getting ansy. So finally they let k eat at 335pm and starts her test. They were really nice and kept k entertained. The tech blew bubbles and played with her. After the test was over she asked me if i wanted a peak.. Sure! It did not look good. :( 37.3% when we should have 55-60% and i have been telling this for MONTHS! Iwanted to shout i told you fing so! We will speak to the doctor tomorrow or in the near future and then go from there. The nurse told me the likely hood that k will have her tube long term. And i am more at peace with it. It is who she is right now and as long as i have my child i dont care! If people have a problem with it. .Shut your damn eyes! :)
Today i got my feathers rowled up. I was told to not be upset by any of it and this is because i SINNED! Lord Jesus please tell me i misinterpreted her comment bc if not... i know what she is eating for lunch next time. A bible sandwhich. I swear we are idiot magnets.
As of right now.. I think i need to withdraw myself from the other parents at the place.. for a day or so.. or just walk away from the idiots. I thought i was going to go ape nuts. But i surprisingly kept my mouth shut. lol. Another complaint i have.. is why the heck can the nurses NOT KNOCK? I mean seriously this is like my home. Not that i am doing anything that i should not. But man when you are changing jammies.. or whatever. please. and no we dont have a bathroom in our room. We have a communal bathroom. Any suggestions this momma will take them.

hello an update and possible surgery

Hello all. So here goes an update folks.. Prepare for the long ones now! lol. Ms K has been quite the diva lately. Since we have been here she has managed to learn how to reflux and asperate again. Destat once. And not want to take her food. She lost 7oz in a weeks time. So they bumped her cals back up on friday to 27 and we have not been there is a while. Since then.. she has gained 5 oz back!
Friday we went to the GI docs across town.. and man dallas traffic is no fun at all! The doc he is a bit unusal. He seen kenadie and was like this is not a simple task like he was told on the phone by case management. He also said he wants to make sure the heart is okay.. cause that can cause reflux. And lord knows we do not put heart and kenadie in the same damn sentence! lol So we have to do 3 studies on her tummy and an echo. Then he is going to do surgery on her stomach. Some of those are thursday at 9am. Then we see the gastrostomy nurse that afternoon at 1pm. She has to look k's g tube over and we are going to decide what to do with it until they relocate it.
We have been told we may be here for 3 to 4 more weeks. It is very hard being away from my family. They have come down on the weekends but still it is hard. I do not have a job anymore now. So I keep praying that all will work out some how some way but right now my daughter needs me and my attention. For those wondering from my house to baylor it is about 4hrs without heavy traffic.
For those who have asked how you can help.. i have to provide breakfast and lunch for myself here. So gc's. Please know this is only for those who ask me. I am not asking. And i love starbucks! It keeps me sane on those rough days.
If you have any questions on kenadie or anything.. please ask away! I will be glad to answer them!
btw i did not realize this was posted on an edited post.. i posted it yesterday.. 7/20/09

hello all. we are still alive and k is in texas at baylor hossy.

Hello everyone.. Please take my apologies.. I have been so freaking busy with Kenadie, my job, my girls, and my husband. So much goes on.. I dont know what to write sometimes.. I feel like when we have a good day/moment then it goes down hill. ugh..
So anyways. We did 1 week in the hospital with the diva.. Got us nowhere really. Then we got our referral down to baylor and that was a struggle in a half. So here we are. We are working on teh tummy. We found out the misses is protein intolerant and has an immature stomache. So we are looking at yet another g tube surgery. She starts therapy tomorrow.. So tomorrow i will elaborate more.

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!