Okay so here it goes.. *warning* i am still in self pity mode!

Good afternoon. I hope everyones saturday afternoon is going well. It is a nice and warm 30F outside and winds gusting like hell out. Uhh.. Not good for retail therapy! lol. So when i am too upset i usually place myself in my computer room so my hb does not have to see me cry or my kiddos. And you guess it that is why i am on the computer. I figure if i type it out i am good to go.
Yesterday started out okay.. Usual day in the life of me. Ran late to work and such. So i take ms K to the doc. Talk to the nurse. Tell her my list of issues with ms k. Then i hear a comment outside by our pedi.. "SHE CAN'T KEEP DOING THIS TO ME! I HAVE PAITENTS TO SEE!" My feelings were so hurt. I dont want to call her at every whim so i write a list for when i see her. So she comes in and sits down.. asks me what is wrong. I am very standoffish as i heard what she said. She says wait one min i have a return visit. Brb. Great. She comes back I open up more to her because if i dont tell her what is wrong it could possibly hurt or kill kenadie. I then tell her. My pedi grabs her own head turns it away from us. Then takes a deep breath and says with tears in her eyes.. Alisha I think she is in heart failure again. COME AGAIN?! She said i knew it when my nurse told me you had alot of things you had to tell me. She was hoping the lung xray would clear up thinking it was just the cold. No such thing. She has fluid on the lungs because of the blood being pushed through at a rapid pace. She also listened to her fontanelle (aka soft spot) and heard a swoosh.. You are NOT supposed to hear one! :*( Right now my heart aches badly. The one person i look to for strength was RUDE or so i thought till she opened up to me. Her dh just left her after 20yrs of marriage. So she was having a horrid day. Then she breaks down and says how much she cares for my ms k and how she is so scared her self. I know drs are humans i work with them every day. But sometimes i think we forget they have emotions too and they have good and bad days too. She told us she has never had a patient with this condition and from what she has read it is so RARE. We may not even be able to get treatment in Dallas. We may have to go to the mayo clinic or shriners (chris from sf group if you are reading this shoot me an email please!). I personally am just baffled by this. I am like please tell me i am flipping dreaming. I am so scared i am going to wake up to my child dead or something. Now on top of this i might lose my job. If i lose my job.. i lose my house, car, and well you know how the shit rolls down the hill.. well that is what it will do. Honestly i will focus on that later or try. But right now. I feel like i have been punched all the way back down to ground zero. A minor set back i can handle.. but this?! Not so much. So needless to say i was an emotional wreck at the docs. The ladies that are in the office are just amazing. They comfort me when i am by myself as i was yesterday. Dh went to the funeral for his BFF. Her pedi did tell me to call her anytime and let her know these things so she is not bombarded on thursday and maybe we can solve somethings before our thur/friday meetings. Ah okay will do. We are the last patient scheduled on Thursday though. So no worries about taking too long next week. lol. We may very well be in dallas next week. I guess we will find out in no time at all. Welll i will explain more later. This is just so hard on me.

Not a good appt

and right now i dont feel like elaborating. I am just upset. We are dealing with heart failure again. :( I will try and pick myself up and write more tomorrow on this issue. I am just sad right now.

Hello All!

Alexus watching baby einsteins in her room: Kenadie sitting in her sisters high chair:

Good afternoon. I hope everyone is doing well. I thought i would just say we are dealing with more of the same. I can't get anyone to get my daughter the proper tests she needs for her brain and i am about to be one p'd off momma. My pedi says if we can't get it locally we will have to go down to dallas. Which i think is a crock of sh#$! I mean come on! Then they say they dont want to do the MRI here locally till May. umm hello blood flowing condition is not like a hangnail my friends! Ugh. So yes. Then ms K decided she wants to destat this morning. Not really my cup of tea but she self corrected and was fab. She came to work with me for a few minutes bc i was running late. Everyone coo'd over her. I will update after our appt tomorrow. I am nervous about it but eh it has got to be done right?!

A mini update

Good morning. First off my dh needs some prayers. One of his bff's passed away. I got a call yesterday morning at 545am from one of his friends. J said alisha i have to let you know that L passed away. OMG do what.. please make sure i am awake. So he said it again. Then he started bawling saying i just need my friends. So i called dh at work and had to break the news to dh. Then dh called him. This is one of the guys that stood beside him when we got married. His drinking buddy, clubbing buddy, and the reason we are together. The night we met him, L, and J were all out clubbing and they were drunk and hungry. I was working at denny's and had been J's waitress for a long time. They came in and i was like omg.. He is hot! L was like hey you come over here and be our waitress. So I did. And then i was like eh you i think your hot.. And well 6 years later and 5 kids later (3 daughters, 2 angels) here we are! So my dh is kinda taking it hard. I am just trying to be there for him when he needs me.
So now the rest. Ms K is doing okay. Weight wise we are still about the same. Respitory virus.. still got it. A little rattly (if that is a word). She now has an O2 monitor at home. We keep her on that when she sleeps and when she is looking purple in her extremities. She is such a happy baby for the most part. Loves to give you those gummy smiles. Sometimes i cry my eyes out just seeing that gummy grin. This baby loves me so much to share that with me. She is certainly a momma's girl. She will put up with her daddy but when momma is in the room.. it is tough as nails for her to be with anyone else. lol. We have our team meeting on Friday this week. And frankly i am NOT looking forward to it. I should have not googled anything about her medical conditions but I did. Thanks to Dr. K for telling more about the pros and cons.
Oh ms K has found her hands! She is club fisted alot.. But this past weekend she opened them and looked at them and SQUEALED! She loves her hands. She also tried to grab my nose of all things. Man she needs those nails CUT! lol. I am so excited for ms K that she is doing this. Today also in the car she was just cooing and giggling. She usually is pretty fussy. So it was nice to talk with her on the way to my grandmas.

Insane weekend and Ms K needs some thoughts and prayers(long post, some ranting)

Good evening everyone. This post is going to be scattered as ms K is demanding of my time right now. But our weekend has been insane. We went to the doc on thursday and ms k was wheezing with low O2 stats so they sent us to the hossy for xrays and to start neb treatments. We got those done and headed to the big D. All that night I was unsettled and just nerved racked. I asked the good Lord if there was anything that was wrong with ms k to please show it to us tomorrow. So we get up and go and I tell the cardi about her edemia (swelling) of the face, purple hands, and marbled extremities. He says eh i bet everything is fine but if not we will tackle it. Well they could not sedated ms k due to her being sick but she slept through 90% of it anyways. :) What a big girl she is. So we wait and wait. He comes back in and says well mom.. I need an EKG. Okay great. Then says well.... the heart function is good, leak is getting to be good, valve good right now. Then he says.. Mom you were right. Something is not right. SHIT! So he says it is not the heart itself but she has another congenital defect. It deals with a vessel coming from the brain to the heart. He was actually looking to see if an area was blocked causing the swelling.. Nope. Not blocked in fact pouring blood an awfully rapid rate. NOT GOOD. I dont know the name of this defect off the top of my head. I knew it friday.. but alot has went on. So he says Ms K is going to need some extra tests and another surgery. :( So I look at him in disbelief and walk out and schedule her next appt. Then run into our cardi throasix surgeon he says more of the same and says alisha i so did not know she had this. But he gave me more light on this and it is a neuro/cardi problem. So i called one of the docs i work for and describe what is going on. The main symptoms this problem poses is stroke and HEART FAILURE! Umm yeah.. Check done! So now Ms K has to be closely closely monitored for a while until we can get this next surgery done. She will be getting an MRI, MRA, and a MRV done. She will follow up with Neurosurgery in Dallas and her cardi throasix surgeon also. We will NOT allow ms K to have her surgery here in oklahoma bc the thorasix surgeon has to be in on the surgeries. Also this problem is commonly found in syndrome babies which makes me ever more anxious for her results. Dr. K is going to talk to me monday more on what to watch for, expect, and to be cautious of. He stressed on the phone to make sure we keep her away from germs as much as possible bc if they need to the surgery asap they can. So they discharged us from Dallas Cho and we were back on our merry way home and got landed back at baptist. The staff at bapitst were great as usual. The ER nurses fought over who was going to care for her. They dont get alot of special needs kids in anymore bc of oucho takes them. So we got the top people from all the depts. I just got home a little bit ago bc ms K decided eh i want my O2 levels to be 78. Not good. So they got them back where they need to be and we are home with nursing care again. God bless our nurse Beth. She is so sweet. We need ms K to get well very very soon.
I am also in need of prayers for my job. I got a distrubing letter from my job stating they might let me go if i can not fulfill my duties there like i need to. Honestly i am doing my damn best but really right now that is not cutting it for them. With this economy it will be tough as nails to get another job. So i really need mine. I have to have a home to keep my family in. I need them to have just a little more patience and understanding for me as the next operation will take us a bit out of commission. I will be in dallas for about 2 weeks or more. Ashley dear.. I might just have to hit you up and say hello to you, weston, and davis. Anyone else in dallas let me know.. When we are down there we love visitors as our family is all in oklahoma.
Another thing is I need some people in my family to be a bit more understanding when i call and give the updates. I know they are frustrated but I just recieved this news so frankly i am not ready for their.. you wanted this baby comments, or how much more can this small baby do, why do you seek xyz treatments. I am doing my best and trying to communicate what i know and any additonal fly remarks would be appreciated not said to me! Please people.. dont ask me how i do it.... or say omg i could not do that. It really is NOT an option and you just do it.
Ah also cousin X called me tonight to ask how we were doing. I was like eh hanging in there. X was like well it will all be fine... hang in there. Life has it way of working out. You wanted a third baby and you got her. At this moment i felt like saying stick a pole up your nose. Then X proceeds to let me know about their child and how they are doing and when is kenadie going to do these things since she is almost 4mo. Okay.. please dont let me snap your head in two.. but kenadie is not a "normal" child as they have already pointed out to me.. so she will do things on her own schedule. When that is i dont know and frankly as long as she is alive i dont care when she rolls over or grabs a toy I am just excited that she is alive, coos, gives me that gummy drooly grin, and snuggles with her momma. All those other things are extras in life.
I know God has a plan for Kenadie and I know that she is one special little girl. I just wish he would cut her a break for a bit. She is teaching me so much about myself though.
As for me right now.. I have many feelings going on. I dont get why.. I guess i will never understand why. Did i do something wrong to get this?! I ate healthy, took my vitamins, stayed on bedrest for upteen weeks, really i am just frustrated. In my heart i know i could not do anything to cause this but my heart still aches. It hurts when people stare at my child.. snicker at her. I about slapped a man when he walked by and said EW what are doing to her. First off dingy i am giving her food and secondly could you have presented that question a bit different? Then as a mom I want to protect her and heal her boo boos. Right now i feel like i am failing her. This just sucks. She just screamed when they did a test on her and she looked at me with those eyes and those eyes say alot. Well i am going to go get my good cry out right now.. and then go on to bed. I am very tired. She has not really slept for the past 3 nights.
Btw.. I have to say how much our pedi rocks. She is just an awesome lady.

Good Morning.. we are leaving for dallas today!

Good morning everyone. I wanted to start my blog off with a pic of ms K from the v-day heart banquet. She is very sleepy in this photo. She got lots of lovins and attention. :)
So ms K has her sedated echo tomorrow. I am praying we still get to do it because she has a really wet cough. If her condition gets worse tonight i will take her into dallas children's hospital before our admission time. I sure dont play with ms k and her medical antics. LOL.
So our week has been okay. She has had a couple incidents. But nothing too traumatic. She almost got herself an er visit when her nail beds were purplish on Tuesday. I dont play around with that business. She got to meet the govenor of oklahoma. I will post a pic when i can. The MLH (mended little hearts) group went and had their pics done with him and he signs a bill yearly for them. I had to leave so my mom was there to be with her. She also had a surgeon visit on tuesday for her G tube.. He wants to give her a different size of mic-e button. So i will talk to the pedi today about that. He was impressed on big she has gotten. I swear she has had a HUGE growth spurt. Length wise. Weight wise she is still hanging around 11.5lbs. Well i will try and update when we get down there. It is looking like we will have to stay at a hotel tonight because the rmh is filled up.

Hello!

Hello.. I hope everyone had a great Valentines day. Mine was okay. Ms K did okay over the weekend. She was pretty sleepy and was today also. I still dont have an answer from her cardi as to when we are going down there. Tentatively Friday afternoon. But again we shall see. She has had a bit more blood in her tube. So my mother is taking her to her gastro surgeon tomorrow. Hopefully he will give us some answers. Also ms K is having her pics taken with Gov. Henry tomorrow with the heart kiddos in our support group. Thursday is her pedi appt where i am going to raise some concerns that i have about her. If it is not one thing it is another right?! Her weight check today went okay. Same weight as thursday so at least we are not losing right. Well i will update more tomorrow. I am exhausted today for some reason.

Good Afternoon

Hello there. First off happy early valentines day. I hope everyone has a wonderful one. So now on to business. First Alexus bw came back okay with her cbc. If it continues we will look into other things. So no we wait more on the derm appt.
So ms K.. well where in the heck do i start with her. First ms K is gaining weight so that is good. We are happy with that. Now comes well the complex part. As ms K gains weight her murmur is getting louder. Not a good thing when it comes to my kiddo. Especially since she has been having sweating spells, fussiness, and sleepiness. So pedi called cardi and he said that our valve problem might have to be solved before we wanted it to. DAMN! So yeah. Then ms K's g tube is irritating her stomach. Like the balloon inside is causing her irritation. But we are just stuck with that because you dont get your choice of G tubes. :) So as long as she does not start bleeding alot then we are good to go. Then ms K has decided she likes the color purple and red when she does tummy time. So now they are concerned about a circulation issues. Ack! So now i am more anexious for the appt in dallas than i was.
Today everyone was feeling better though as far as stomach viruses and what not. So that is good. I started my counseling sessions today. It was really refreshing. She is a grandma herself and got a bit teary eyed when we talked about ms k's life so far. But she gave me some good tips and I am going to try some of them.
I hope everyone has a wonderful weekend. Btw if you have any fundraiser ideas for pediatric heart disease shoot me an email or leave a comment and i will answer ya. hancock _ alisha @ hotmail . com (without the spaces obviously!)

Hello!

Good morning. I hope all is well. Ms K is doing okay. We had our genetics appt and now we just sit and wait for the news. He has a few concerns but says he is not going to say anything till we have our bw results back. She had her blood drawn and of course she is still a hard stick so it was pretty traumatic for her. They ended up doing a heel slicer and finally got all the blood. I hate that it takes 6wks to get the results but we have quite a bit of things to do. So we will just try and focus on those things. This morning i pulled out a pea sized blood clot out of her tube. But we have an appt today so it should be okay.
Alexus is having some issues. She has lesions everywhere and has had them since November. We have tried many many treatments for her and still we are fighting this. It scares the bejezzus out of me bc she has bruises that are not healing, fevers every now and then, and when you work in the medical field it scares me! well i will post more after an appt.

Ms K's great gma is home and K's update

Hello all. First we start off with good news. Ms K's greatgma is home from the hossy. They released her around noon today. We are so excited. We just have to try and keep her healthy along with ms k.
So ms k's update. Well the kiddo has since decided that she is going to lose 1.5oz for her home health nurse today. She has been a bit more alert per my mom today. So that is good. We just have to figure out the weight issue.
Ms alexus is sick. Has a temp. She woke up saturday throwing up. We thought it was a fluke and let it pass by. No fever great appetite done. Well i call my mom for an update on ms k and she tells me that ms alexus has a fever. NOOOOOOOO! GG just came home and K has a crappy immune system! So needless to say i told her to lysol everything and keep Alexus far far far away from her!
Tomorrow is our genetics appt at 810am cst. We will not have any answers. It is more of a hi its nice to meet you let me take some blood, family history, and your money! lol. We will have the blood results back in about 2-4wks where our peditrician will give us the results. We have asked that it be this way just in case we get something wonky coming back and she is just awesome and compassionate. I just hope they can get her vein great tomorrow bc she is a really hard stick due to her heart issues. I bet gg and gp give her lots of loving tomorrow. Oh yes and 1wk till our sedated echo.. The closer we get the more anexious I get. I know it is not in my control but it is still scary none the less.

Okay so tonight i am a bit bummed! (warning very long and lots of ramblings!)

So first things first.. updates. K's grandma is doing much better. She is still in the hospital but recovering nicely. She got an infection that went into her blood stream. But they are getting her healed up nicely. We have not been able to go see her bc of Kenadie's immune system. Lord knows we don't need anything else piling on. So ms K.. well we went two days without calling the doc. I am holding the call until the morning. But she is doing okay.
So i am bummed a bit. Last night ms k was out at the store with me and she turned a nice shade of red/purple.. Now those colors look great on clothing but not on my baby. She self corrected after about 5 secs. Breathing a bit irratic and self corrected about a min. So i tried to put it out of my mind. Well tonight her aunt tonya was with me and she decided she was going to turn pale and grey and sounded like she just could not get much air for a sec or two. I quickly snatched her out of her carseat checked her pulse rubbed her sides and the girl was SCREAMING! lol. I dont know if she refluxed a bit or what. But really she is just not acting her self so i will be calling the pedi.
Tonight i feel like crying. Why.. I really can't nail it. I might just need to sit down and have a good cry. Realisticly i know why. I let some stupid as# teenagers get to me. I was at the mall with ms k, lexus, gene, and her aunt tonya. K would not take the bottle and there were 4 teens sitting across from us. So i go about my merry self and start hearing chuckling and look over and they are staring at my baby and laughing. I wanted to haul off and smack the shi# out of them. This is my baby who almost went to heaven and you want to laugh at her. What crap. So i try not to let it bother me.. and the little teeny boppers just kept staring. So i calmly got up took ms k to their table and said "while you are staring at my daughter.. i thought i would let you know this is how she eats. she almost died of heart failure and had open heart surgery and she has to eat this way due that and some other issues. so next time you would love to joke around just remember that!" Genesis asked why they were talking about Kenadie. ARGH! I really want to protect my daughter with all my being. She is my miracle and sometimes people just dont get that. Another thing that gets to me.. is i constantly feel like i am watching her. I am always assessing her. Watching her breathing, looking at her skin tone, making sure she is not sweating, analyzing her eating habits or her behavior.. why can't i just get to enjoy my baby. Why can't i just be okay with it all! This sucks. I guess tonight i am just having a really rough night. I honestly would liketo know why God trusts me so much. I keep telling myself that God needed a special mommy for kenadie and he just would not pick just any random person so he picked me. Sometimes though i feel like he is putting me through a nightmare. Like two losses was not enough. I know i am blessed to have my child living and doing well. Please know i am grateful. Just tonight i am struggling. When i am face to face with people.. I really try and act like i am handling it well. I really try and push it far far away. And i think it finally catches up to me and says gotcha.. you still have to deal with it. I was also asked how i go to work. How can i do it. Realistically sometimes i look forward to it. That is my escape. I am not there to analyze every little thing and i dont have to think about it for a bit. That is until my co-workers decide to bug me about her heart issues and what not. And really i get tired of talking about it. Some days it is okay others NO just leave it alone! Especially when they ask me stupid questions.
Another thing that bums me out is our neighbor girl looked through our door and she said why is your house a mess? Hmm let me see i have 3 children.. 4,2,3mths and if your not feeding kenadie or doing meds your getting the next one ready. I am trying.. I am going to school, work, taking care of kids, trying to be a wife, and everything else under the sun. Ah i dont know what isup with me tonight beyond the fact i am just emotional. I think part of me is really trying to deal with this wide range of emotions. I am getting so angry and hurt again. I thought i was at peace with those feelings. But no i am not I guess. I dont get things. I dont get why a baby has to die or why a kid get cancer. Or why my child has to have a heart defect why some crack addict gets a perfectly healthy kid. Or why my friends baby has to stay in the hospital for a long time and a dhs baby gets to go home right away. I know life is not fair.. I just dont get it.
I think i am going to start going back to counseling and see if the lady's at the support group can shed some light on how they cope with things. I know my child's heart condition is not as bad some others but for me.. it is bad enough. kwim. Thanks for reading my ramblings if you read them. I have offically had a good cry now and i think i am going to go to bed.

Good News Friday w/ a hint of a scare!

Good morning. I think I am going to take a leap of faith and report a bit of good news. Guess who is over 11lbs now? Yep you read that right. She is 11.3lbs now! HOORAY! Oh and she is now 23inches long. Birth length was 17 1/4inches. So we are definitely making a bit of progress. :) As far as the bleeding goes she took cultures of the specimen that i brought her and yep i was right it is blood. Where we dont know. It sucks but we are trying her on a different med. So we shall see how that goes.
Also K's grandma has NOT had another stroke! YES OH YES! However she does have some kind of infection and was running a fever of 104. Last i checked her temp is back to normal, hb is not erratic, and blood sugar back where it is supposed to be. Ah.. my grandma is going to help me make a trip to margaritaville! :) I called to check on my grandpa and he is doing good also. They have been married for 52+years. I think i have lost track on how many yrs it has been now.
Now for the scary bit. Ms k had a severe sweating episode. It was one of those where she looked like she had been in the sauna for a bit. Temp was fine in the house. Not too many blankets. In fact i was chilly. Hands were clammy. Rapid irratic breathing for 80 secs. Then self corrected. Please tell me why being a heart parent can't be simplistic like her cards said it would be.. They said oh once she has her repair you should be off to the races. Done completed. Unless you are that 1% that just has issues. Well he#@ what percent is kenadie in the 1 freaking %! Anyways.. sorry i had to get that out. I wanted to start my blog this morning with a bit of good news!

Kenadie's great-grandma needs a bit of prayer

K's great grandma is in the hospital. She is very dehyrdrated and they are doing stroke work up on her ( she fell and was abit disoriented) . She is a prior stroke victim so that always scares the bejezzus out of me. My grandma is a very special lady. She has helped raise me when my mom was on her own with 3 children and has always been my guardian angel. I tell my grandma and grandpa quite often how much they are my angels. We are praying that she has an infection that can easily be treated.

Then ms kenadie decided her great grandma can not have the spotlight to herself and decided to show mom that she had a bit of blood in her G tube again. So i called and she has an appt today at 2pm so she decided she would make further decisions then.

I had to include this pic. Her sisters thought that she needed mr potato head's glasses on. I find it hilarious!

Not much to really update on but i have to let out some of my feelings!

Good morning. So ms kenadie is stable and doing well. She is back at home this morning. They ran one test on her tummy and there was not any huge bleeds. They also took an xray and yet again nothing. Her blood values are great. We are just baffeled as to where the bleed is coming from. Her doc is pretty optomistic that is nothing really severe. I am going to try and hang on to those thoughts. :) Oh yeah as for the infection.. we think it has hit the road now. She has an occasional low grade fever but we think it may be due to her tummy issues. The respitory virus.. well it is hanging on for dear freaking life! I swear i am going to protest the freaking thing! lol. She has an appt tomorrow. We shall see if we get to keep that one or they see us today. Wish us luck. Her home health nurse is coming out. Never know how those visits are going to go or if they come now.
So now my feelings. I had a conversation with family member X (name not revealed as some family does read this for updates) and the conversation was in my mind hurtful see if you are with me on this. I was giving an update on ms kenadie and was told you just had to have another baby alisha. You could not stop with the two healthy ones that you have. Then that family member continued to go on to say hurtful things about her G tube and what not. Then in the same day i was questioned about the meds i took before conception, during pregnancy, and all that jazz. Please people. My heart aches right now and i worry about my child. Don't pour salt on the open wounds. I do not tell them how many children they can and can't have. I have been through hell and back with just getting pregnant with my children and keeping them to where i can hold them in my arms. All i am asking for is emotional support that is it. Not a dime from anyone. When one gets pregnant there is no guarantee that child is going to be 100% healthy. It happens. That is life from what i getting to know of. Kenadie just happens to be one really special girl that was given to me for one reason or another. So please if you can't support us in a positive way dont call or anything. We have our own battles that we have to focus on. Sorry i know i got off on this post but my feelings are just really scrambled. I know it is alot to take in for others also but i wish they would realize how much i am going through with my daughter.
My daughter has taught me so much so far. Before her i was/am such a control freak that did not/does not like to ask for inch of help. With her heart condition it has taught me that i can not always control everything and i have to rely on others and try and trust them to take care of her medical well being. I have also had to learn how to ask for help. I am learning I CAN'T do it all. I just wont spread that far. Hmm if only i can spread like my hips did.. you think?! jk!

My drama queen displays yet another scary skill

So my drama queen decided that she wanted to display yet another scary skill. This morning i heard her whining in her bassinet and checked her out. I tried calming her down a bit and then noticed something brown in her g tube. Then checking out more. I noticed it is old blood. I drawed back on the tube and got some fresh. HOLY SH*T! Talk about freak me out. I called her home health nurse of course no answer. I call her doc she gets this scary tone in her voice. She said hold one sec alisha and calls the pedi surgeon. He says have the home health come out NOW and check her bp, temp, resp rate, and lung sounds. So they get out there. Bp is okay, temp is a bit low, resp rate fine, and lung sounds great. So now we are just waiting for a bed to open up so we know what is going on with ms kenadie.
btw i just got a call from her doc. i am to check her in at 1pm or so. please wish us luck and hope and pray they find answers!

Some pics of ms kenadie

I took ms kenadie to have her pics done on the 25th of jan. Dallas CHO gave us a partial gift for the pics since she had not had her pics done. Here is the link where i uploaded them. http://www.msnusers.com/Kenadiespics/shoebox.msnw We are sending this one to the American Heart Association. Btw she was 10.2lbs when this picture was taken.

I am still waiting on her home health nurse to come out. She did finally call me and practically said it was my fault. And that i am supposed to call them directly. The triage nurse lost our message. My pedi also called and i told her what was going on and she said she would give them a call. She is very protective of ms kenadie so i feel sorry for them. ;) lol. Anywho I thought i would post the link to her pics.

Really irritated! (Just a venting post!)

So i have to vent for a moment. Yesterday as i posted ms kenadie is sick. I called her pedi and she said wait for home health to come out and do her o2 stats to check and make sure she is not destating. Well we waited and waited and no one showed or called. I called back again last night and still nothing. Thank goodness she has not gotten worse. I am miffed! I am paying for this service to ensure my daughter is doing good and what happens.. they dont come check on her. It is enough that I live in fear pretty much every night that something is going to happen to my daughter. Really i dont need this added stress. I did call her case manager this morning and left a voicemail for her to call me back. I find that is very unacceptable for them to not even call me back. What CRAP! So now i am waiting for her pedi and home health care manger to call me back.
Now really i dont know what we are going to do if ms kenadie has to keep going to the doc every day. It is 25.00 a day. Now you say that is not much. But umm when you take 25.00 a day multiply it by 5 it is 125.00 a week. Our pedi does not take medicare as a secondary so we are kinda put out on that. then one of her meds cost a fortune (90.00 even with inusrance). But we are working on the med part. Pharm companies are pretty good about helping out. I wont be getting paid until april 1st bc i have had to take so much time off with her and still having to take some time off.
Then my body has decided it is going to go ape nuts on me. I have yet to stop my postpartum bleeding. She is 3 mo old now. This is getting to be crap! I can't take the cramping anymore. I called my ob and he said i have to go back on hormone therapy bc he thinks my endometriosis is back with a vengence and until i can go on lupron ( a med that induces menapause) then hormones is what we are going to have to do so i can have enough blood in my body to keep it running. I am going to go on iron supps bc it is pretty low and i have zero energy even when i get some sleep. Do you think Always will name me vice president of stockholder? I mean i contribute enough! lol.
Okay sorry. But i had to get my rants out. I will try and put on my smile today and come back with some positive stuff!

We need a few prayers for Kenadie

Hello.. just a short post. Ms kenadie has decided to throw yet another element to the party. She started wheezing a bit this morning. So i called her doc who was at church and said well call the home health nurse have her come out and then we will decide. Our home health offers respitory care at home so if she decides on breathing treatments then we wont have to go to the hossy. As for the infection her cbc is higher than normal but they are going to repeat on monday. Her doc thinks that is where the fever is coming from. She thinks she might have gotten some resp virus. So we shall see what is going on in a little bit.