Just a few pics from my champ!

Hello all! Just thought i would share a few pics of my champ! She sure is a happy girl with all things considered. She was such a happy girl this morning.

So right now we are taking a week off. Her pedi is out sick this week so we are using that to rest our brains somewhat and give ms K a break. She has all her monitors and what not at home so we are good to go.

Today i am having one of those days. She inspires me so much so I think i just need to take a look at her pics when i get down or hear a stupid comment.

When we were in memphis.. a family member asked me.... now alisha.. are you sure the meds you took during pregnancy did not cause this? Really i am going through a living hell do i have to get made to feel this way? DO I NEED TO MAKE A SIGN FOLKS?! So i politely say medical research points to NO! We dont know why ms Kenadie is the way she is but really i think she is pretty freaking special.

You know some things also trigger me other than people's stupid comments. Sometimes i will be doing my work and all of the sudden it seems like a flash of her being in the cv-icu flashes in my brain. Why? I have no idea. Maybe i am not supposed to forget it. Like one could.

Oh my i have to tell you this. We went to my cousins car place yesterday to find a car and salesman M says oh i lost my son when he was 10yro due to renal probs. He said you know the stupidest comment came from a lady we knew so well. She says M you know i know how you feel.. I lost Ruby when she was 7yro. He says really who is Ruby? Ruby is their DOG! Okay folks i am an animal lover yes indeed but losing a dog does not compare to losing your child! I can't even relate to that. I can relate to the fear of losing her. Btw just for the record. We have had that same exact comment from a dr i work with. Yes she is still living. Security prevented me from throwing her out of the window! LOL. JK!

When we get our van i will have to show a pic. Kenadie needs this van as much as mom does. We have her apnea monitor, pulse ox, emergency O2 that has to travel with us everywhere, feeding pump, and normal baby equipment. Then you add my other two girls to the mix too. Yes we need the room. So uncle sam. All my taxes are back at ya helping the economy. :)

Btw Jen.. Thank you so much for your gift. I so appreciate it. If there is anything i can do for you please let me know! Your an angel dear!

Also i want to thank you all for you support and prayers you people really help me stay sane. I have a couple people irl that are helping me with my sanity. My cousin.. who has been and is being amazing. She listens to me cry, get angry, and she gives me great advice. (mother of the other K) Jill she is from the heart group. Man that woman is amazing. She can endure all my smart ass remarks and help me come up with a few too. :) She has heard me cry and as a fellow heart mom she knows the fears and what not that comes along with it.

Well i shall post more when i talk to her pt and her home health nurse. I am crossing my fingers it was a great day!

A long update. Sorry for the lack of.

Very crappy internet signal here. I have to cross my toes just to type this. lol. So we are going home probably today or tomorrow. I never thought i would find a worse hospital than the one i dislike in oklahoma. WRONG! Sad when the nurses admit it too. You tell the public you are at L in memphis and they are like omg i am so sorry. Wow. That makes me feel great. So from the start it has been crappy. We get here at 330 am after being on the road for 8hrs (could not fly as they were ginormous amounts of money, but am flying home.) No body knows who the hell we are even after telling me that the ER would. Trust me it was not because the ER was busy bc they had one back in the ER and that is it. The lady even said wow we are dead right now. Well they only have 12 beds to begin with. So yeah. Then they tell us to go burn time till 9am. Okay then say better watch your backs the crime rate here is worse than detroit. Holy lord what have i gotten myself into. So i am nuts and have not ate since 4pm so i am like lets go. We go to denny's and find out just what they are talking about. Oklahoma is so calm compared to some places. Then we get back at 6 am and the nurse bless her heart puts us back in the procedure room and let us sit back there. I call our nurse manager still nothing. So i finally get ahold of my pedi who calls Dr. K and we get the show on the road. Now the admit girl lord i would love to know how she got that college degree that was hanging on her window. She was slow and i dont mean pace either. We finally get up to our room at 10am and they tell me K has to be NPO. Okay fine. Then they echo tech comes in and does her scan he says well i heard you are in the OR in the morning. Umm DO WHAT? Then she has her ekg.. that was fine. Then they say after she has had nothing to eat or drink since 6am that oh yeah we can't get the tests done. So they ask me for the 5th time what she eats. I told them Alimentum. The nurse says oh i dont know where to get that at. WHAT?! She says oh she is going to have to wait. By that time i was ready to go home. People their attitudes and crap here was HORRID! Lets just say they were not happy we were here at all. Then finally around 7pm dr. K comes in and says get comfy let us figure out what is going on and i am too tired to do it right now. So after 40+ hrs of no sleep i was a bit dilusional. The nurse that night had to give me a play by play till i told her to HUSH! Dont wake me up to tell me she X amount of pee in her diaper. Then she was supposed to be npo at midnight. The chick does not turn her pump off till 4AM! There is no such thing as commuinication up here. It is horrible! So after all this is done and said. Ms K has a leaky valve in her heart. They are just watching that. Her patches look beautiful. Which is great. She has a vein malformation that does not connect to the heart which we found out why dr. K is not going to touch it. Then her bladder and kidneys are refluxing. So they are going to do a test on those when we get home. They are also going to do another test down her throat to figure out why she can not consume more than 2oz at a time. Personally i want nothing more to do with this hospital. Dr. K is a wonderful surgeon when you have that problem right there. He has touched so many lives. But as he told us. I am not confident i can do this so i am not. I will leave it for someone who is more versed. Now that is fine with me. However WHY did we come to TN?! I just dont get it. I am a bit rundown emotionally and right now i think i am going to take time to sulk and i will pick back up and be back in the game. As for Kenadie. We are told it is not going to make her "DECOMPOSE" so i am going to back off trying to find an answer right now. There may never be a true answer for what is going on and you know as long and she is happy and her O2 levels can bounce back. I am good. I am just so disappointed.

I need a bit of help! WE ARE HEADED TO MEMPHIS!

For those that asked if they could help financially and i said i would let you know. Well i am saying it now. We just got a call from our pedi saying they need kenadie down there tonight. AA wont let us have a medical flight unless they have 5 days notice. :( So i have to pay out of pocket for a flight to get there. It is 9 hrs drive time.
email me if you would like to. please dont think i am asking just to ask. i am addressing this to those who have asked.

if you are an iv mom.. email me if you live in memphis. hancock _ alisha @ hotmail. com (without spaces)

A good laugh and a good cry

So this morning i shall start with a good laugh. Sometimes i think God has a way of cheering us up. Yesterday after work i went to go pick up my girls from my gma's house. I see 1 huge box, 1 medium box, and 1 small box from our home supplies company. I am like okay small box is formula. Medium box is bags for machine. Wth could be in the huge box. So i see medical straws on the outside. Hmm okay they did this before to disguise her syringes and what not. So i open it up.. people.. i died laughing. It is 15000 INDIVDUALLY WRAPPED STRAWS! On the front of the box it has kenadie's tag and everything. So my gpa and I got a huge kick out of it. We were like man kenadie is going to be drinking ALOT if she needs straws already. And this is for one month supply! lol. Ah it provided good laughter. They sent us a nursing home shipment and the nursing home got our shipment. what they are going to do with baby g-tubes, syringes, and more formula.. hmm i'll never know. Maybe they were trying to make them feel young. ;) lol.
So yesterday.... I called my pedi in the AM because i wanted to convey the info about TN. I had also recieved a call from Cleveland Clinic saying that she has been approved to come to their clinic. However we would love TN first. So my pedi called me right back. That NEVER happens and it is not good obviously if she does. Esp when you have results pending. lol. So she says Alisha this Donna.. Umm hun i need to talk to you about K's bladder and Kidney scan. Okay.. Then i knew it was not going to be fine. She says something is not right with her bladder and kidneys. The bladder is dilated and so is the kidneys. Now this would not concern me but with everything else she has going on it does. And her pedi said hun i dont know how many more times i am going to have to deliver bad news. She told us she loves kenadie like her own daughter and it is getting harder each time. So then she got down to the meat and potatoes of it and just told us that her bladder and kidneys aren't working they are supposed to. :*( DAMN DAMN DAMN! I just fell silent and she asked if i was okay. NO I AM NOT OKAY. I AM TIRED OF THE SETBACKS! But i calmly said okay umhuh. She said they need to sedate K and do a dye test in her bladder and kidneys and check the quality of blood flow and what not. Then she will have another procedure to fix what is going on with her little body.

Not good news.

I am done. Ready to throw my hands up in the air. K's bladder and kidney scan did not come out good. I am so upset. I thought i would be okay but it leads to more issues and more questions. I give! I think i just need to go get a good cry out and i will come back and give the details.

Hello!

Hello all. Our weekend is trucking along. I am about to hit the sack but wanted to give a update on the diva. She is doing okay. We had to use O2 a couple times this weekend. But she would quickly snap out of her spells when she got about 1.5liters of O2. I have to call her pedi in the am to talk to her about some stuff. That will be one of the things i chat about. Also her swelling is not being maintained by the meds again. :*( Poor girl.. Looks like someone socked her eyes sometimes. Or if you remember how you get when you are in your 3rd trimester all puffy and stuff.. That is her! We will also get her kidney and bladder results tomorrow i think. I have a feeling those will come out just fine too. I mean some things we can't have simple answers for. She is recovered from her Gtube drama. Boy i check that fluid level all the time now. lol
Alexus is doing alot better. Not sounding like a whistle when she breathes anymore. Now it is Genesis. Kenadie had a cough today thank goodness it is a dry one. However she was up all night just cranky and could only sleep on my chest. She had the sweats and just was not herself. Tonight i will be making her stay on her pulse ox all night. Just to make sure we are doing okay. We have the apnea monitor if i want to use it but eh the pulse ox is good enough.
I am doing okay. This weekend i have been a bit emotional. On one hand i dont know then on the other i am like a ball of nerves every time she turns purple and every time she has a sweating epi. I try not to let it get to me but man it sucks. Then one of our heart buddies she is going to have to have another open heart surgery again. This lil girl has been through way too much in her little life. These babies should not have to endure this. The one thing that i can relate to with this other mother is i dont sleep and i am always scared that my baby is going to die on me. I hold her every moment i can and love on her every moment i can. I am so scared that if i dont i might regret it. And you know that sucks to kind of live that way. One thing this process has tought me is i can not take a dang thing for granted. It can be stripped away from you in an instant. I love all my children. I am scared that we wont find a doc for her. And that she is going to fall through the cracks. I feel like sometimes i am not good enough for her too. And people that is a crappy feeling.
Another thing. My children's godparents are expecting after 9yrs of nada. She had a mc 9yrs ago. And my goodness it feels like it is me. I want this so bad for them. I am a nervous nancy every time she goes the doc. I am scared when she tells me about an u/s or the doppler. They so deserve this baby and please Lord carry through with this one and bless them with a HEALTHY baby!
My cousin took her baby to the doc and found out her baby's murmur was an innocent murmur. I was like yeah congrats to you. But then again i was like DAMN IT WHY COULD that not be us? Aaron was like well maybe if we were in their position then we could. Trust me he is being a smartass. He gets irked about that stuff too. I know i am being selfish in those thoughts too.
Well we should have some answers tomorrow. I will post as soon as i get them. Thanks for reading my rambles if you made it this far.

Please pray that this doc works out.

Please pray that this doc in tennessee works out. We are going to get him Kenadie's information. He is a GREAT surgeon.
Alisha

Diva is a capital DIVA today!

So I thought it was when they become teenagers you tell the Lord to grant you with some sanity to help you get through their drama.. Not my girl. I get a call from my frantic grandma who said HELP KENADIE JUST PULLED OUT HER GTUBE! Holy sh#t! I tell her to let me talk to gpa and tell him to push it back in and i would be there asap. Gpa refuses to put it back in. So i drive like a mad woman. When i got there it was almost closed shut. then i race her happy butt to the ER and the nurse and doc decided to try and do it their selves. They did great work with it and got it back in and no surgery. The doc was bout to give up and then bam got it! ah! Kenadie kenadie what am i going to do with you dear!
Now if that is not enough.. while i am driving like a bat out of hell to get K to the ER Alexus has to go to pedi for wheezing. She has a sinus infection, double ear infection, RSV, and something wrong with the bone in her right leg. I am going to dig a trench... seriously folks i think I need some R&R. And hold on to your seats.. Houston is making us wait i guess for the sun to turn purple also! So we are going to look into Utah, Phili, Boston, and Cali. K also has to have a bladder and kidney scan on friday morning. 630AM! HOLY CRAPSHOOTS! lol. that is freaking early! So yes it has definitely been one of those days today.

We are home again for a bit

Hello all. We are home again. We got released Friday evening after they monitored her from anth. She had an mrv of the brain and it showed nothing. which i knew. Then the doc said that he was done and that we needed vascular. As easy as that sounds umm nope. They are few and far between. It sucks. We are going to have to travel to houston, boston, phili, or sacramento to see a doc. I dont understand why any of this can't be simple and easy.I am pissed bc they knew that she needed vascular and well they kept doing their crap anyways. What a waste of time for ms k and i. I am sorry but i hate for my baby to go through this crap.
One positive thing that came out of it is that ms k seen neurology on thursday. She has mild hypotonia (weak muscles) and a bit developmentally behind. Well the attending who i work for said alisha i was thinking about ms k and i want to test her for Riley-Day syndrome. She explained it and said it could be a huge possibility that she could have it. Okay great. So Friday they sent out the bw. It takes two to three weeks for it to come back. ugh. I was doing good by not looking it up until i got to work and one of the girls said she had looked it up and was not impressed. Lord please keep the comments to yourself! So i could not help myself and i looked it up. Now i know she might not have it. But if you look it up yourself you will see ms k has quite a few of the stuff going on. Then it says that she has about a 50% of making it to 30! Holy shit.. I am 25 and that is still young to me. I want to be a grandma. I mean we have an arranged marriage already. ;) (oh Jane!) So this really did not help me at all. Sometimes i wish people would keep their remarks to themselves.
Please pray for ms K though. I think she is sick. She has a dry cough, stuffy nose, and just flat irritable. That is not normally her. I have also got a cold or something. So ms K needs those stay away germs prayers. We need her healthy till we get to our vascular doc.
Her pedi is going to call me today and we are going to have a small chat. I am supposed to take her in for her weekly check tomorrow since she is going to out on spring break.
Here is a pic of ms k getting her EEG (brain wave test) (just click on pic to see the pic)

Ms K has an attitude! (edit added to bottom of post)

So ms K has an attitude. This morning she was supposed to have a swallow study. We get down there. She is npo. Ready to devour a steak. ;) Then the lady hands her the barium bottle.. Umm lady that is ice cold! So K is like HELL NO this is not flying. So the speech lady and the radiologist is like we have a busy schedule so we can't wait and blah. Well fine. We go back up to our room and ms K now wont eat from a bottle period. NADA! I told that lady to warm the crap up. erh! I know it does not have to be ice cold because i have had one before. So now she is on an eating strike. She also wont breastfeed either. Which she was getting descent at. So needless to say i am not the best person to talk to today. I think i am going to make my husband come up and do hospital duty for a bit. I am over it. I feel like one doc says abc and the other says xyz. Can't they get their brains together and do what they need to?!
I met this special little girl yesterday. She has a dismorphic feature on her face but she is so beautiful. Full of life. She is 9yro. Has a trach, g tube, and her tounge split in half a few days ago. (Hence why she is here) That girl is a spitfire. Seeing her drive really motivates me. Maybe i need to go hunt her down this morning! She told me that boys are mean to her. I told her that i would go whoop some butt for her she got all excited. She just loves kenadie. They dont live too far from us either so i hope to stay in contact with her and her mom. Pray for her surgery today too. That they can fix her tounge. You never know how important something is till it is endanger of being taken away. Or so i am learning.

Eta: My baby now is sick. She started running a slight fever after her test this morning. She does not want to eat by mouth at all. :( I TOLD them she was not acting herself but NO i dont know anything. TERDS! So now i am wondering if her G tube is infected bc it does look really red. I try cleaning it and i have told the nurse numerous times when they do her care to CLEAN her G tube! ERH! She is also going to get another sedated study in the morning. Why hell i dont know. They say it is out of their hands and they can't do anything for her and that she needs to get down to dallas. Umm yep knew that. Well come to find out dallas may not have the doc we need. K needs a vascular doc. Tons of them for adults but very very few for peds. We are looking at memphis, boston, phili, or houston. I am hoping someone is willing to take her case and see just what is going on with her.

An update and left with more questions!

Here is a pic of ms K. I also have a vid of her being her! :)

Okay so i am very very frusterated! K's prelim results for her mri came back okay. However there is a cyst in the brain. I dont know exactly where i will know more tomorrow. But right now i am just broke down. I am so done! Kenadie turned purple today for her anethesia doc. Then tonight before logging on her butt, back, arms, and legs turned purple combined with rapid breathing. :( I am just over this mess. Then this weirdo came in and said she has sleep apnea too. I mean people if you met him you would know he is CREEPY! lol. So yet another thing that is on our damn list!

Btw THANK YOU BRENDA! I so appreciate the laptop loan. The computer room is closed tonight and well i am sitting here on the laptop. :) I was so frustrated earilier i did not want to come on though.

I will try and write a longer post tomorrow. But right now.. I guess i just need my good cry. Part of me wants to say okay i am done. But somehow i will dig deep and fight hard for this girl! http://s182.photobucket.com/albums/x185/alishaandaaron/pic download 09/?action=view¤t=100_1501.flv

Hello there. Sorry for the lack of updates.

Good news first! MS K ROLLED OVER FOR THE FIRST TIME! YAY!

Sorry for the lack of updates. My laptop is mia due to being broken. Sucks but oh well. Ms K is haning in there. She had an episode and i caught it all on my digital camera so i could show the doc. He was like HOLY COW! Yep see i am not lying buddy. So they have finally agreed to do the MRI here where we are at. Then if indeed it shows a brain avm then she will have to be transferred to dallas because her cardi thorasix surgeon is there.
Please pray for her issues to be shown tomorrow during the tests so we can get them fixed quicker. If dallas wont take us i think i am going to call memphis. A couple of the ladies in our group their children have been treated by this doc and they are doing wonderfully.
I have to say thank you so much to brenda, jill, and kim. Brenda thank you so much for keeping us company the other day! We appreciate it! You were also there to see ms K roll over for the first time! Jill and Kim i can't say thank you enough. You ladies are heart mommas and know this roll. And right now this roll SUCKS! I am so close to pulling my hair out and you three ladies have kept me sane!
From my bed breaking in half last night to the cafeteria refusing to send my order up.. I am done! I hate being here. Only the cuban makes me happy. ;) lol. ( I will elaborate more later on that!)
I will try and post more tonight. My husband is here and my computer time is up. :(

a mini update w/ ramblings

good morning. forgive my typos I am emailing on my phone.:) ms k is being such a fighter. when she is awake which is not often she just smiles and coos. god knows that is what keeps me sane. we are waiting on the docs to figure out where they want her to go. if dallas won't take her then we might be going to houston or alabama. both of which are so far away from home. as long as she gets the care she needs I don't care I will travel anywhere. my kids are my life. my biggest fear is something happening to my baby.
I am trying to keep faith in the docs that they have her best interest at hand but it is hard when they almost killed her. oh and the next nurse or person that says I bet ur tired of hosps or ur pretty emotional I am going to smack!
I was thinking of getting kenadie a journal so I could write letters to her and how I feel.hmm I wonder if I can get someone to bring me one up. lord knows I won't leave ms k.

a mini update

k is doing okay. we r still waiting on a bed in dallas. she is having some breathing probs. they can feel her liver again. :( she has an AVM (artery and vess meshed together) you can also hear a pulse in the brain. not good either. I need prayers that god will bless the doc with all the answers we need. well I will try and post some after I get a nap. I am so emotionally exhausted and physically.

PLEASE PRAY! K is in the hossy

I almost lost my baby yesterday. She stopped breathing a couple secs while at the pedi's office. We dont know why other than her heart failure. We are at a local hospital and are waiting on a bed in dallas. This all just sucks and has been a horrible nightmare. I will post details when i have a chance!

I love this video!

http://www.youtube.com/watch?v=Pihnu3Qlx30

God must really love me!

Just not in a good mood.

I am just not in a good mood right now. Today is K's appt and she was having some problems this morning. Gagging and wretching all the way to my grandmas. Swelling in the eyes. I swear one of them swells and looks like she has been punched. Her breathing is a bit more rapid. I just feel beat down today. :*( Watching her struggle is so hard. Well i will write more in a bit.

Hello! (with an afternoon edit)

Hello. I finally decided to come on and do an update. Sorry it has been so long. But as you know that my life is nuts! K is doing okay. She had some edema going on last night. I decided to give her lasix a bit earlier and right away she was doing so much better. I wish she would not do that to her mommy. I can't take it! We still have not heard word on dallas and frankly i am going to be crawling up their caboose if i dont get an answer SOON! Ms K looks like she has lost some weight this morning. My gut feeling is that she has. So i am going to have her nurse tell me exactly how to fortify her formula again just so i can tell doc J that i am doing it right and have had the nurse double check my work. kwim.
Lately i am just an emotional ball. One minute i am great the next not so much. I hate when people ask me stupid questions about her condition. It makes it that much harder to deal with. kwim.
I am working on Campaign Kenadie though. My dh and I are working on raising money for pediatric heart disease awareness and research. We are also striving to add one meal card and a fleece blanket in the bag that you get at Dallas Cho from a local organization. The last thing a parent should have to worry about on surgery day is if they personally are going to eat. That kid needs a strong mom and dad! Also the blankets that you get in cv-icu are so thin. I know i love having a blanket to cuddle up with. So that is something we are working towards. If anyone wants info and wants to help raise funds for us. Just email me at campaignkenadie@hotmail.com
i will post an update after i talk with her pedi!

so my afternoon edit is that when i went to pick up ms k today she was a happy lil camper and then had a big sweating spell. clothes are damp and all. ugh. :( i am so DONE.. DONE DONE DONE! tomorrow is our appt i am going to lay my feelings on the line. i know kids have far worse things going on.. but man this crap scares the bejezzus out of me!