Well HE#@!

Hello there. My ms kenadie decided she wanted to complicate things just a bit more. Yesterday's appt went okay. Her weight was hanging steady. So her doc decided to give her vacs. Before she gave the vacs i told her i thought something was off with kenadie. She said okay that we would watch it. Well last night she decided to spike a 101.5 fever and be very very cranky. So I called the on call nurse she told me to call the doc so i have to call the on call nurse to get ahold of her. She says be in the office at 815am this morning. So we do. They take a pee sample and ms kenadie is still running a fever. Do a chest xray and it is a bit fuzzy and hazy. So they decide to do blood samples that we are waiting on. Her urine test was spilling out white cells in it. So that equates to an infection. So they gave her a shot of antibiotics and now we wait to find out if she has to go in hossy for antibiotic drip or we can do oral. Her cbc will tell us the story. She has also lost 2 oz in weight overnight so her doc was a bit skeptic. She was trying to decide on throwing us in the hospital now or wait it out. I chose the wait it out method for right now. Until we have a firm answer. Just because like she said the hospital is a germ breeding ground and she has a piss poor immune system right now so we can't afford her to get anything she does not already have. Oh while they were doing her xrays they noticed that her gi tract is thickening and they are going to have to watch that and make sure it does not do anything funky.
Ah funny story.. the xray tech that did my daughters chest xray said "did you know she has wires in her chest?" oh my people i was so tempted to say no but i said yes. I mean seriously.. did you think i did not know?
So anywho.. we are waiting on the doc to call and let us know what is going on. She said bw would probably come back in the morning.
Now i have a mini rant. I am feeding kenadie this morning in the office.. a lady tells her dh that i should cover her up and her child should not have to see that. Umm do i tell her to cover her baby when he eats?? NO! She told him it is unnerving.. IT IS A FEEDING TUBE PEOPLE! NOT AN ORGAN HANGING OUT! I can understand.. It took me a bit to look at it. But really it is not horrid looking or anything. Plus do they really feel the need to say stuff loud enough to where i can hear it? My child is precious in every way in my eyes. So really i dont care just makes me irritated at how stubborn folks can be.

We are back from dallas!

My ms kenadie while getting her tube feeding before going to see dr. nutchent in dallas. :)

So we finally made it back from dallas. We were greeted with a wonderful ice storm on monday preventing us from coming back home. Then on tuesday more of the same and the highways were shut down. Then dallas got hit on Tuesday night wednesday morning. But by the afternoon we were determined to come home and drive slow. So a drive that should have only been 3 hours turned into about 5 hours long. Not cool for a baby who is having issues with her G tube. Sunday night her G tube started bleeding around the site and is causing pain to her. So that made for a fun and interesting trip. The ladies at the RMH were awesome when she was being cranky. There was always someone asking to take her off my hands. One of the mothers said it helped her cope since her baby was in the NICU due to prematurity and she could hold and love on kenadie. I was like girl go ahead. :)

I spoke with kenadie's pedi last night on the phone and we chatted about the update and what to do. She would like kenadie to go ahead and have the chromosonal testing done just to rule that out. I personally dont care what the results are as long as we have an answer and how we can go about getting her treatment under control. kwim. When we talked she said she thought kenadie did not have the outward appearances of syndromes but she has seen babies without them. So we just have to remain positive about everything.

I love my baby so much and it really takes alot out of me to know something may be wrong and to see her in pain. I get so frustrated and angry with the whole thing. My heart just kind of aches right now. One thing we are doing right now is just trying to live our lives normally. As normal as you can get with doc appts and nurses being in your house.

well i will update more when i get back from her appt. it is at 130pm cst. sorry it is so scatterbrained.

Just an update from dallas

Hello all. So we are in dallas right now. We got down here about 730 pm last night and we are at the ronald mcdonald house. Everyone who has seen her comments on how big my little one is getting. We seen dr nutchent today. And well we dont have any answers right now. He wants to do a sedated echo on 2/16/09. He says we can then get a good measure of pressure in her heart and see what exactly is going on. Should she go into distress before then they would obviously move it up. He said if you look at her outward appearance you would not know that the lil miss has a heart defect. But this is the same baby that you really could not tell she was in total heart failure either. Then he thinks we have another issue dealing with weight. He says it could be something hormonal, malabsorption, or some minor disease. Okay you can not just throw out a disease word and expect me not to freak out. But i am trying to stay calm till we have answers. It is just that kenadie does not do so good when you throw % at her. Only 1% of babies have a congential heart defect and 3% of those have to have them repaired and of those 3% only .5% go into heart failure before their operation. Hmm let me see here... We are not doing so well with percentages. So no rolling the dice with my kid. So i am left with no answers again. We dont understand what is going on with ms kenadie. My heart and my mind and really exhausted right now. I am trying to be strong for her but i am just tired.
Being here at the ronald mcdonald house (rmh) is really a humbling experience. It helps in a sense and then just makes me down right pissed. I mean why does a 1yro have to have cancer???That child has not even gotten to go potty on a regular potty. Ride a bike, have fun with mom or dad? I just dont get it. And you know through this process these moms here have never made us feel like our problem is small. They just support you through it. I do ask for prayers for the kiddos here. There is a few cancer kids and a few transplant kiddos. WEll princess kenadie is sounding off. Gotta go.

Okay so i tried to brave face it

I guess i tried to hide and put my brave face on. Really right now i am scared out of my wits. I can't stand the fact that i have to watch my child's breathing. Some nights i am so scared to close my eyes for 5 mins in fear that she goes into heart failure. Once you have been there it changes your life forever. I seen her sweat tonight and it was like enough.. I can't take it anymore. This baby deserves a break and fankly i think this momma deserves a mental one also.
I was listening to the mary tyler moore theme song and she will make it after all. :) In fact that is what got me to crying.. I know she is going to make it.. Just tonight i am hurting emotionally and mentally and i am exhausted emoitionally and mentally. sometimes i feel like i am going to break into pieces mentally. like i have had enough and i am done. but i know i can't quit. i am her mother. i am supposed to be her rock and her strength. frankly this sucks sometimes. Just right now.. I guess i just need to cry it out.. kind hard to type while crying but hey the key board needs a good cleaning.

well i leave you with the video i was watching and listening.. i am going to cuddle up to my pillow have a good sob and just pray we get some answers and hope that all will be just fine. I will keep telling myself that she will make it after all. Btw i used to play the mtm theme song when i was pregnant and going through my issues too. I always told my self i could make it after all!
oh and another thing that bothers me a bit.. i am back at work.. so i get the lovely pleasures of coming in on the residency floor of the ob floor. you get to hear of how they dont want to be pregnant or their baby is annoying them. or you see some lady you know who is had one too many hits on crack with a healthy baby. really life is seeming so jaded and not fair to me right now. my friends child dies of brain cancer, another one of my friends children has kidney cancer, and my daughter has heart issues.. and this seems fair HOW????? People keep telling me God has a plan.. I am really trying to believe it. I know these children are so special and will touch many lives but it just does not seem fair. okay well enough for now.. i am tired and i am going to try and get some sleep while aaron is taking his shift of watching kenadie breathing and stuff.

Well CRAP!

So as you can tell i am very frustrated! I was going to come on and be upbeat and what not. But after i got off work, done with school, and went to my gma's house i picked up kenadie and her hands were clammy and she was sweating. I asked my gma how long has she felt sweaty and she says oh since about 5pm right after i tried to make her eat from a bottle. My heart dropped and i wanted to scream NNNNNNNNNNNNNNNNNNNNOOOOOOOOOOOOOOOOOO! SWEATS = BAD! So i called Kenadie's pedi who had me take her respiration rate, capillary refill rate, access her retraction of her breathing and check her bluing. All checked out okay beyond the resp rate which we figured would be off due to her having these symptoms. So now ms kenadie wants to have heart symptoms again. What crap! Some how i was just hopeful that we would go down and all would be fine.. Well in my imaginary world anyways. My pedi told me to watch her tonight and if i think it gets worse or anything she will direct admit to the hospital and have her flown down asap. So at our appt today she lost another .5oz and our pedi was very frustrated she could not understand what the heck is going on with her. She did not lose this much weight when she was in heart failure the first time. But she did decide to wait until monday for us to go to dallas. Then she told me to call and let her know what is going on down there. Before her appt i was like if they mention repair i am going to say WAIT! But now no way.. Fix it now!
Oh btw.. her insurance approved us till feb 15th. Then we have to go see someone local.. yeah right and the sky is green all the time. We are doing another appeal then too. Well i will update more tomorrow when i have dry eyes and i am not so frustrated where i want to throw something.

So i called the on call last night

So last night when i got off work it just was not setting with me well that kenadie had lost 2 oz of weight. So i decided to call the on call last night. Which i must say i do not like the on call protcol because you have to talk to an operator then a nurse and then she decides if you need to speak to the doc. Okay so i told her eh my child is a heart baby and dr johnson said to call her if i needed her. So i did. So doc J calls me back and says so glad you called me. Then she ran through her noodle of what could be causing this and then said bring her in my office tomorrow at 1130cst to see what is going on then i may admit her due to weight loss and go from there. If the conclusion is her heart then she will have her flown back down to dallas so that they can deal with that there. In my opinon i want to go there anyways so i have the confidence that she will be okay. I know how they work and i know their client care. And i must say i have a wonderful pedi that agrees with me. So i will be taking her to the doc here in a little bit. Part of me is hopeful then part of me just says whatever will happen will happen and i have no control and i just have to have faith that all will be just fine in the end. So i will do my best to try and update when i can.
alisha

Ms kenadie update for today!

Hello there. Well the home health nurse called me with our update for today. Obviously kenadie did not recieve my message that she is supposed to gain weight and not lose it! She has lost 2oz since monday. That is not helping our case for her heart repair to wait. We were hoping with weight gain that the lil ms would gain and we could argue our case to wait a couple months. That may not be on our platter now. Her cardi and pedi are both out today so i have left messages and i will see what they want me to do tomorrow. I am wondering if we are going to going down to dallas sooner than monday. My pedi says she will shoot us down there quicker than you can say i and she does not care what the insurance has to say about it. :P Speaking of we have not had an update from them either but from working in the medical field i know they move about turtle pace or slower. Ms kenadie has been sleeping alot again also. This concerns me. I know babies have their sleep routines and peaks and valleys of awake time but i also know what too much is for her too. So i wait till tomorrow and then find out what to do. Btw the pic above is my little queeny sleeping in her car seat on the way to an appt the other day. She does have quiet the cheeks. :)