A few rambles!

Good morning. Its too early for me to function even though its 9am. lol. I want some coffee but have not had any in over a week now. I have lost count. So I need to get some ramblings off my chest.

First: For mothers day I got a mothers ring that has all my children listed on it. Yes it has angel Robert on it and his birthstone. Well Alexus was like mommy who is that on there! There is only 3 of us here. I briefly explained it. Now she wants to tell everyone she had a brother who passed away. She says mom he is in heaven and one day when i am old and I can't move I am going to see him. I kinda laugh and say yes one day when your really old. Well I found out by her care provider that she likes to talk about it quite often. I don't know why. However I dont agree with people yelling at me for talking to her about it. She will know that mommy had a baby who went to heaven and his name. I am sorry you do not feel comfortable. And it is not YOUR position to tell me well i lost x babies and I don't count them. I honestly dont care how you manage this. I cope the way I cope. I Will talk to my child about her feelings and why she wants to talk about it. Also do not tell me well i lost mine alot further along than you and we do not talk about it so I should not. I am sorry you feel that way. I really wish people could be sensitive to other people.I will talk to her about this though. That she can talk to mommy about it and to just refrain from telling others.

2nd thing on my mind: Ms k counts are low as we had discussed before. Now we are debating about having her port put in. Poor girl has no veins for her blood draws. It takes multiple trys. Like 4 or so. Then she is so upset and over stimmed that it is so ridic. Her immuno dr in cleveland has to make the ultimate decision on the port and he sent me and email and said its up to me. I need to weigh the pros and cons.
Last I checked I dont have my MD yet. lol. I have thought about it. ;-)

Also we heard there is a tummy bug going around. Please pray that she does not catch it. Genesis threw up the other night. K counts are low and it is an automatic admission and it usually takes us about 2 weeks to overcome it.

A well needed update!

Hello to those who read my blog. I am sorry for the lack of blog updates it has been so chaotic. At least I try to keep my fb updated. So.. Since may kenadie has had her blood drawn and it has came back low. :( She is not responding to her IGG infusion like she had been. Her vitamin D, alk phosphate, lymphocytes. Yeah a list of them. So we are going to increase her infusion rate, going to increase some other meds. She is such a fighter. her pediatrician god bless his soul is amazing he will email me or call me whenever i need him. He is so dedicated to her and helping us with her stuff.

One thing I made a decision on was that Kenadie will be a DNR in the pedi world they call it AND (allowing natural death to happen). If something should happen and she has no heart or is not breathing I am not going to allow her to be resuscitated. Yes some of you may not agree with my decision on this however as a parent I need to know what is best for her. To me I don't want her living on machines. We are still doing all of our treatments I just have this lined out in case something should ever happen.
Unfortunately as a special needs parent with a chronic disease these are some things you have to think about. It is not the easiest either. However it has brought me some peace that I know what I want for my daughter.
The other day I was thinking that no parent should ever have to think about their child's mortality and such. But the world is not fair so some of us have to and some have had bury their children.
Another thing her pedi and I talked about is the way we choose her treatments now. Is this for her or to her? For her is to keep her quality life a happy one. To her is being selfish and making her miserable. Also viewing life as Enjoy the day and make the most of it because you have it not because you might not. Hell anyone of us could kill over tomorrow. So you have to just enjoy the day bc you do have it. Since having these discussions it has made viewing treatments and stuff alot easier. I can cope with the impromptu appointments better.
Last week we found out that ms k has a cyst in her urethra and some tissue is covering her vaginal area. We are doing hormonal treatments and going to go to the uro dynamics doc. She cries in pain so much because her vaginal area hurts so bad when she pees. But we have been trying to get pee from this kid for a week and omg it is so hard. She knows we are trying. We have tried u bags and a hat. everything. Silly girl.
Well thats a mini update i will try and do more now.

to my son angel Robert

Happy early birthday baby. I hope you have a great one with your grammie n granny.
Momma misses you so much. My heart aches everyday for you. Time does help. But I still miss you more than life itself.
I see what your sisters are doing and wonder what would you be doing. Would you be getting ready for pre school and having daddy teach you those crazy boy things. Would you be momma boy? Would you be like your sister n have her disease? Would you have been healthy as a horse like your dad?
I grieve never hearing mommy I love you. Or even momma your mean. Lol. I love you more than you can imagine. Please keep watching over your sister n keep her safe. She has a long fight in her journey. I don't want her to join you anytime in the near future. I am scared that one day she will and I know you will be there. Still let momma keep her till I grow old.;)
Mommy loves you. Happy birthday baby. Your a big 3!

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I have got to remember to blog this so i can tell her when she's a teen!

So today we were in the car. K is having a horrid day with her disease. Stupid TAD! So Genesis says " mom it's not fair K gets to have her meds in her tube she doesn't have to taste how gross they are." Me: I am sorry dear. She has to have a tube bc she is sick and has a disease. G: Well mom I want one. Me: Um nope. You dont want the surgeon to cut a hole in your belly do you and put it in? G: the surgeon put it there?! me: um yes how do you think she got it? G: Mom, Dad told me God gave her one when she was born like you know when she was in your belly she had one! And mom I still remember when she had a spaghetti noodle down her nose! Me: (desparately trying not to laugh!) Um hun that was not a spaghetti noodle. that was a feeding tube too. And the surgeon put it in her tummy babe. A few minutes of thought passed then g said : mom i have changed my mind i want to keep my tummy holeless. me: okay good. Ah. what a good chat.
But it got me thinking. As far as she is concerned her baby came home with these things and at her young age. Yeah she probably thought god put it there in my tummy. But you must admit the mental image is hilarious!
She is definitely starting to comprehend more and asks alot of questions and alot of whys. Why did her baby have to be born with a holy heart, and why did her baby have to have a tube, and mom why do you always have to be at the hospital. Now I must say those get hard. I try to explain that God made her special and her body needs some help from the doctors but you know she just wants her family at home more. Or at least that is what she told someone at school. I will never forget when we stayed at baylor for a month and they stayed here she told this little girl that her mommy lives in texas and her daddy lives in Oklahoma and they see each other on the weekends. That broke me down but made me look at it in her perspective. At these times i feel so inadequate. Like I can't be a good enough mother. But then again. A normal mom has issues juggling time and lord knows when you have a child with special needs you cater to that disease! Alexus recently told me she wanted to go back and live with her granddad. I asked her why. She said mom you know its hard living with kenadie. I said why hun she says mom she is always sick. I know hun. Then she reminded me of how much her granddad means to her and you know what i used to get upset but I had/have that relationship with my grandpa so go for it! If that is what brings the peace and solitude in her life. More power to her. She is going thru alot at 4 years old.
So today lady k's system thought it was a great day to shut down and not work. I guess its acting like the nfl. Shut down go home. Only problem is her system did not get the memo important personnel has to stay that means all organs in attendance and going. So lots of vomits, dumping sessions, and now we have an acid burned bottom. Yup not a lovely picture but she can give pistol pete a good running right now with his bowlegged. We called the pedi and alerted him. I gave an extra dose of zofran and she has been a content sole for right now. I mean vomit wise. Dumping is still an issue 30 mins after she eats out it goes. Makes me want to scream bc I see her in pain. I have to say I am happy that we have avoided the er! So far anyways. Please knock on wood for me.
You know she always has this way to amaze me though. All 3 of my girls do. But tonight through k feel like doggy do, she got onto the bed and we do kisses and snuggles and she came up and started it. then tried to tickle me. I swear that kid knows how to make this mommy cry. Just because I see the fight she puts out even when her system lets her down. Then she said mom i wish you could make tummy feel better. Oh hun I wish I could.
this journey that i am on a mother with a child who has a very RARE disease is not an easy road. you have so many dreams and aspirations and when you hear the diagnosis and stuff your world tends go by the wayside but when she puts those arms around me and does our kisses and snuggles it makes this journey worth fighting for that much easier.

Two naps and I am still so tired!

I took a small snooze and then took another nap. I am so beat. So a review of the week. all 3 of the girls have/had strep. Alexus has strep and pneumonia. K well she is her usual self. She gets sick her whole system goes down. As I started to write this blog k started vomiting. Ugh. We had a conference with dr b. He said that we have to figure out what is going on with her pacemaker. It is going below the settings and the only way they can figure out why the pacemaker is not catching it is her ans system is tricking it. The pacemaker expects a few beats to be off and her ans can cause one beat to be off. We seen the cardiologist on thursday n this is what the cardi said too. So they both agreed to put a holter monitor on her. I hate them just because I have to remember to drag the cell and to make sure i wake up and push the alerts on the phone during the night when we dont have a nurse. We discussed her application going to the NIH. We are praying we get approved. I love our pedi so much.. He does so much for us and not just medical stuff.
I am praying we get some answers on our pm.. I am not sure she can endure another surgery or I.

Warning it has been a crappy day!

Yep just what the title says. It has been on heck of a day. My car was broken into last night after i came home from the gym. I was going to come back out and get it and kenadie was having an issue. Yes my doors was locked. They stole everything they could easily get their hands on. Then they decided to take themselves a little shopping trip to walmart and spend 800.00. Stupid bastards! K's report from Cleveland was in there. ugh You know how hard it is going to be to get my paws on those reports?! Its going to take an act of congress almost. I called the credit card companies, bank, paypal, i need to call the credit bureau to let them know. Then re-order my drivers license tomorrow also get new ssn cards. This really does suck. We also have to go down to social security to change k's payment method. I called dhs that works with her stuff to let them know too. Just in case.

So saturday was genesis last basketball game of the season. It was awesome to watch how much her team has grown they all are newbies! lol. So it was hilarious! I can't believe how much she is changing and I feel like I miss so much of it. I remember giving birth to her and sitting outside of my work and crying for 20 mins because I was going to miss so much and my grandma was wonderful about letting me experience it first too. I never thought I would miss because of me being too busy for her. I try though. I love to hear what all she does why I am gone too. I have to say though my small circle of support was great during the basketball season. If i could not be there her daddy, nana, papa, and/or godparents were their routing her on!

genesis getting her basketball trophy.

Genesis played her last season game of basketball today. Good job g!

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Thoughts for today.

So today has been quite the day. I had clinical today and that alone was a challenge. My good friend who is usually by my side through this was not there. She would no longer be there. It was hard to walk in there and hold my head up. I wanted to cry all day long. For once I took a lesson from it. I can not want to do things for other people. I need to want to do it for myself. (I am sure this statement did not make sense) But I have to want to become a nurse for myself. Not for my family, my friends, or anybody or anything else. And today I realized that I want it so bad for myself. I love the job. Today was not a very positive day but every patient I saw I tried to help or make a small positive impact on.
One thing I find difficult is relating to normal people now. This girl was in the hospital and says she was upset because she had been in for 2 days. I was like really seriously 2 days. I have been in and out 2 years more in than out most times. But to them its a huge thing. I hate that the disease has changed my feelings and identity so much.I used to be able to say yeah my kids are driving me nuts and be okay. Now when i even remotely think of that I feel so guilty and any mom has the moments where they go my kids are driving me nuts.
So yeah. Starting this weekend I start my exercise routine. This should be interesting and you might read alot of ouchies. lol.
I will try and post a blog tomorrow. I have an email and stuff for american airlines to do. Wish me the best of luck. If it comes through I will share the news.

attempting to update while on the plane!

So as the title states I am on the plane back home. K is so far past over stimulated I believe it will be next year before she calms down.
So Tuesday we had clinic with Dr chelimsky both the husband n wife. It always so nice to see them. They are so understanding. While we are there they always make us feel like she is the normal one and we are all jacked up. Lol. So she said the nay sayers can call her. Trust me she is an irate British woman. I believe it would not be pretty. She think k gi tract is slowly going downhill. Which sucks. Everyone has to be able to absorb nutrients and poop. I know we all like to blush n pretend we don't that unless you are a man then you laugh n think you don't stink. So she wants to do a rectal monometry (sp?) Test, egd, rectal biopsy, and an ekg on the stomach to see if she is a candidate for a gastro pacemaker. Also she suggested we apply to the nih to see if we can get accepted for her rare disease stuff. So we are going to try our best. Please pray we do get accepted. This would be great for k n the Autonomic team.
So today clinic was okay. He thinks her system is in a funk right now due to not receiving her Ivig while in patient. I want to smack the terds at the hospital. So he said he wants to hold off on bloodwork until she feels better. I of course was fine with that. I hate to see her in pain. She has been in enough pain.
Overall the team agrees her disease has slowly progressed and you know that just blows monkey balls. It's hard. Especially when your spouse is thousands of miles away n he calls hey hun how was clinic today. That includes a deep breath and reciting the whole appointment in which is like another slap in the face. Ah.
So we will be venturing back to Cleveland in 6 wk and will be there for a while. Probably a week or two.
Now I have to manage my school schedule n my family. As far as school goes it is definitely a challenge. My good friend who carries me through is having her own issues. She is my sanity at school. I feel lost on what I am going to do. I already had my cry. Now I go tomorrow n keep on keeping on. I have to do what is best for my family n that is get my lpn then move to my rn. I know I can do it. Deep breaths after all we do get to add a member to our family after I finish school. So I gotta keep my eyes on the prize.

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ramblings while in the air

So right now we on on the plane to Cleveland. Lately I am so mixed emotion. I am grateful that k is here. On the same token this is nuts. I question on a more frequently basis how can I do this? I see no end in sight. Is this the way it will be for the rest of her/our life? I remember thinking the other day I did not sign up for this. I wanted to be a mom that's it. However God has kindly reminded me just bc you have a child does not mean they are going to be "perfect" I mean who is anyways. So I guess I just gotta throw my temper tantrum n keep on going. And people please spare me I know others have it worse. I am reminded all the time.
So last night I was in a serious funk. I felt like I am not good enough. But this morning. I know I am. I can't let people get to me.
I am planning on some serious lifestyle changes. I have gained 40# since k diagnosis in Aug of 09. I turn to food a lot when I get bad news. I can't take care of my child if I am not taking care of myself. Just won't happen. So I have decided I need the support to help me go to the gym n eat better.
Also if people want to say hateful stuff they can go jump in the ocean.
I am doing the best that I know how and can.

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Beware its a late night post and we are in the hossy!

Good morning. It is 0125 here. I am kindly waiting for the attending to come up and visit with me about ms kenadie. So lets do some backtracking and let me catch you guys up.:) So we finally got to go home from duke usa and came home dec 2. Got home and got some mrsa in our stoma. Thank God it did not migrate to her incisions. I am pretty sure I would have passed right now. During this time frame she had a night where she had 168 alarms yes you read that right 168. So i had a nice talk with dr b about this occasion. Ms K and the girls had a great Christmas. I swear santa was too nice thanks to quite a few friends and family members. New year rolls around. Since about september k has been fighting strep on and off. Since coming back from duke we have had it 3 times. Since september 10 times. So January was filled with seeing the ent for her tumor in her throat which is a lymphatic hyrgroma. (p.s. dont google) So ent dr g said tonsils must come out. So we scheduled that for 2/8/11. Btw in the mean time of this i passed my mental health rotations and made a 91% overall on it. So yay me. Well lets move to february. So it has been a hell month. Sorry but it has. We went to Duke jan 26th. well we get there and as usual her body decides to throw hell at us. she had 350 cc of residual in the abdomen all three nights we were there. I called dr b he told me give her miralax and lets go from there. So i did. Nothing. Come home the nurse does not listen to me and make no progress. Sunday night early monday alexus starts vomiting. Great this is not good for k. Monday the 31st k starts vomiting and cant stop. Tuesday I need to take her to the hossy but can't blizzard. So i give zofran and wait it out. She does better. Wednesday same saga. Thursday enough sun out to melt me a pathway I take her to the ER. The tube has coiled in her abdomen and she gets a new one placed. Not in the correct spot but yes placed. Friday vomiting still. Saturday I take her back. Which is where we have been till now. She got a simple 24 hr tummy bug and it shut her system completely down. So we have waited.Saturday night they placed an iv and did some blood work and cathed k 8 times. yes 8. She is torn up bad and they still did not get it. She is a bit abnormal in the urethra area. As i told them and they did not listen. So Sunday rolls around and I notice her breathing funky in the evening time. I with my great nursing education check her over while waiting for a nurse to answer the call light and see that her arm is two times the size and swollen black and blue. I ran down to the desk and told them. They came in. The iv infiltrated her and burned her 2nd to 3rd degree burns. I am livid!!!!
Well she continues to vomit I convince them to look at another xray and what do you know she is full of feces and it is partially blocking the intestines. So she gets to start enemas. After two of those and no luck we move to golytely. We were on it yesterday most of the day and nothing. Then her iv fell out. After 5 attempts i said no more. Not going to let them stick her like a pin cushion. So they ran a pedialyte drip through the tube. Today moved back to golytely and then pedialyte at night. We finally had two small bm's. Tomrrow they will decide if she gets a picc line to see if she needs the hydration and where her nutrition status is sitting at.
Tonight I was sitting here on my lovely laptop noticing the alarms going off for a 3rd night in a row. Hmm that should not be happening. So I told the nurse. Looks like the infiltration that ms k had affected her pacemaker. You better believe i am HOT! not pretty hot either. lol.
I am thinking if it were not for bad luck I would not have any at all.