An update, rambling,and emotional business.

Hello all. So here is the update. I took K to the pedi on friday and you know it is never good when she comes out and says I am putting you as the last appt today.. I need the time to talk with you. F***! So we go weigh.. 16.10lbs..25.5 inches.. and can't remember head stuff. She comes in and does her assessment. Then says that she is a bit concerned as k is going backwards on some developmental stuff instead of forwards. Eh whatever. Then says.. well dr t called me. Says he is concerned that K's stomach has not grown in mths. UMM COME AGAIN?! Same man that came out of the OR and told me all went well and he does not understand why she is having motility problems and does not understand why we are seeing flashes of blood? F him and his crap. Btw my pedi is pissed bc he passed the damn buck on her AGAIN! A little history.. when she had her major surgery.. he went on vacation that next day and left her to do all the ICU work and everything. Boy she was fired up when she found out I did not know! She casually states yeah he sent me a letter stating his concern about her stomach not growing. Then called her after the fax. Beautiful. (not!) So both her and I kind of stared at each other in disbelief. Then we discussed our options. GI here in oklahoma sucks monkey balls so NO that is not an option as they have already consulted on her. Then I mentioned the feeding programs in Texas and she says Alisha you do the research and I will back you up. Okay so I am/did. I have found many programs. But I want to know they have a good heart dept too just incase we are in need of caridac help while we are there. Now most of these programs are 6-8wks long. And I will practically have to move to another state for acouple months to go and be with her. I dont know what I am going to do. I am going to bounce some ideas off my pedi.. But my daughter comes first and foremost. I have emailed NC, Florida, and Cali thus far. I am also going to email Phili and Utah.
Now the emotional part. Right now I feel like I am letting her down. I am supposed to provide the best and stuff and right now I just feel like I am not cutting it. I dont know how i am going to choose between my job and her care. I am sure it will all work out but right now I just dont know. Her SSI is supposed to go through but when I have no idea it is the goverment. So you never know how that is going to go.
I am supposed to be taking her to the test tomorrow and to the pedi but I know if i call my boss then I am screwed. Why why why?!?????!!!!

Ms. K rocked the OR and an update on her cousin!

K before her surgery in waiting room. :)

Hello all. So ms K rocked the OR yesterday. She was such a good girl. She is in a bit of pain but we are staying on top of it. There were a few bumpy spots but that is due to the lovely institution that we were at. (LOTS of sarcasm inserted there). There was an agreement that K would be in observation for 24hrs after her procedure. But the charge nurse in step down told them she thought it was not necc but that is the only reason why my pedi agreed for this one doc to do it bc that is what he agreed to. Then the anth doc. Lord please bless her with more understanding for patients. I tried telling her k's symptoms and what not on the heart related side and she wanted to hear not a word. She just told my husband that "she LOOKS very healthy". If you recall from my last blog post or so.. I was going to punch someone that said that. BUT since we were stuck with her I figured I should not hit her. lol. I called the pedi and let her deal with it and she was FURIOUS that they sent us home. So ms K has been on her pulse ox for 24hrs and has only had one destat. We have rescue o2 at home so that is not an issue. :) Today she is back to her gummy grinning self. btw she has 2 TEETH NOW! My earliest teether.

Alexus had to go to the hossy last night also. Lots of wheezing and stuff and 5hrs of waiting finally got seen and they do two things and out the door we went. They have diagnosed her as having childrens asthma. We kind of already knew it but they can not give the diag until they are 2yros. Just sucks bc yet again I feel like I did something wrong. But whatever. Anywho.

Then K's cousin has ALS Leukemia. 90% cure rate for his age. He is on his second dose of chemo. And is holding up pretty good right now. Parents aren't but that is to be expected.

The diva being the diva and K's cousin needs some prayers fast.

Good morning everyone. Today is another day on this earth! So our weekend has been rocky. Diva keeps wanting to sleep after her bottles. Not like her normally. Then on saturday the diva decided grey feet were going to be good. (a note for those that dont know.. grey is NEVER a good skin color) So on went the pulse ox. Low it was a swift breath of O2 and she was good to go. Oh and a bit of lasix to help us along. Her granuloma (sore) is not any better. In fact her tummy is warm to touch so she is going to pedi this am to check and see if it is infection or what.

Then yesterday K's cousin Picklepuss (7yro little boy named Aaron on my dad's side of the family) was diagnosed with Leukemia. What kind we dont know right now. They are doing a bone marrow biopsy this morning to determine that. He went to the hossy very early sat am bc of a fever and not being responsive. They did bw and it came back + for leukemia. He is in fair condition in the Icu right now. My family is just in shock. We went and spent easter with him. He loved all over my mom and kenadie. He is a very onery and vibrant 7yro little boy with blonde hair and all. His mom is obviously in devastated. She went from thinking oh he has a virus to omg my child has cancer. I can not relate a bit to her but what i can relate is on the icu game. Btdt and I know the feeling of praying that your child lives hour to hour. Those machines can either drive you nuts or you can make a song out of the beeps of them. Yes if you are wondering I did. What's a mom to do when she is in the ICU for 23 hrs a day. LOL.
So yesterday after I recieved the news. I just sat and bawled in my van. I was hearing them talk about the ICU and it just brought back so many emotions and knowing that I might have to endure this game again well just sucks.
We are going to try and lend our support as much as possible. However with a heart diva that is hard to do. But we are going to try.
Many prayers are welcomed and some comfort and peace for the parents would be greatly appreciated.

eta: if another person says what is wrong with your family why do they have a black cloud or are they cursed i will punch them and then claim insanity.

Sooo.. here it is.

Hmm I dont know what to say this morning. I am okay one minute and then not okay the next. So my Diva's ticker is not behaving like well the avg ticker should post repair. First please let me tell you that I have been yelling at the top of my lungs that ms K has been having swelling and puffiness for MONTHS! I get oh it is normal or some other random thing. (not from her pedi. her pedi is with me on this) So back to the ticker issue. K's ticker has mitro valve regurg.. which we knew about. We were keeping a watchful eye on that. So forward to yesterday. I got greeted with tricuspid regurg, stenosis (can't remember the first name), and pressures are a bit on the high side. Now Kenadie's pressures have NOT been off in a while! So this slammed me hard. I work so damn hard to make sure she is healthy, does not get too upset, has the best care possible. And now I feel like I have failed her. I know in my heart of hearts there is nothing that I can do or say to make this better or go away and thatI could not cause it. But as a mother you want to do what you can. Anywho.. back to echo again. So if we had one or the other we would be okay. But now we have both. And frankly that just sucks. That is like when she had her asd and vsd. I mean if we had A and not V she would have been fine. So dallas has been called and they say there is not a contraindication for her to have the surgery so we can still go forth and if a problem should arise.. she is to be on the first helicopter to dallas!
So let me back up a bit. Yesterday I got the call from her surgery case manager. Lets call her C for this instance. C says "Hello alisha.. I am dr. t's case manager and I was just calling about Kenadie's echo since you emailed me and wanted to know about it." Alisha" okay great, let the results rip!"C says" Now I do not know much about caridac to save ones soul but I talked to cardiology already" Alisha"gulp" C says" So Kenadie's echo showed some things normal like no leakage around the asd and vsd BUT we have xyz that has come back abnormal" Alisha"oh umm really?!" C says" well i guess this is okay since cardio says that she can go forth with her surgery" Alisha"please call her cardi in dallas and make sure it is okay" C"okay great will do". So I am a bit unsettled that a case manager called me about her results. I mean umm hello.. Information you know. Thank goodness we go to dallas. They called meback and was like yes it is not good but her pressures are not crazy right now and her regurg is on the moderate side so go ahead with tummy surgery BUT know you are coming down to dallas after recovery. Okay fine with me. Her thoraxic doc is going to peek at the echo but he has already sent the email and says I WANT MY OWN DONE! Man this sounds just like him in person too! lol. Their machines down there have awesome clarity and digital gadgets and stuff. It was crazy looking at her holes in her heart when we went down there for the first go around.
Please do not say:
alisha at least it can be fixed. I DONT WANT TO HEAR IT! HEART SURGERY IS NO FUN GAME! Ask a few heart parents they will gladly tell you their thoughts of the bypass machine!
alisha at least she looks healthy. you might be missing your two front teeth.. i am tired of hearing that! looks do not get you anywhere. and IF you knew the heart kiddos i have met. you would not know they have a heart condition unless you ask their parents.
and please dont tell me that at least she does not have cancer. i might go ape nuts and have to claim insanity when i go to court for going ape nuts! lol.

So the final word on the echo and my feelers are really hurt. another echo update.

So 3 days later and we have an idea on the echo.. So fasinating! Anywho... My diva does not like to have the same results two times in a row.. I mean that would not be her! So last time our mitro valve was regurging not too bad and doing well.. Well what do you know. The regurging is a bit worse than they would like to see it at 6mos old. But we are still going to manage growth and work on our vascular till she is over 1yro. Then we are going to talk about fixing it. I am just so over this business. One moment the pressures are great and beautiful the next well mom it is a bit off. Thanks.. love it. (sarcasim) Btw we are going forth with tummy surgery and then a quick trip to dallas after we recover so they can do THEIR echo. Love it when her docs get possessive.
So i have to have a rant. I went to school yesterday to see if i could get a reprieve on my grades.. and the counselor who assisted me.. not the normal one i work with. Said just tell them in your reprieve that you were not stupid just easily distracted. EXCUSE ME?! COME AGAIN?! I explained to her that i have been living in and out of doc offices and hospitals I dont think I was distracted easily. She says well mam school should be a priority if you are going to attend. Um right.. I had to tell myself to calmly walk the hell away or I would be going to jail. This lady really needs a new line of work. I felt like a failure like I just dropped the ball on it all. I am about to graduate and had to put it off for a semester for a GOOD DAMN reason. My daughter! But I still let it get to me last night. I felt like a piece of dunk. Like i should have managed better or something.

update: i got some bad news from her echo other than what we know. i am upset right now and dont want to talk about it. when i can catch my composure i will come on and enlighten folks. please understand i am just really upset.

Happy Mother's Day and an update

Good evening. I hope everyone has a blessed evening. Today was a good day. For mother's day my husband took me on a nice quite romantic dinner that had a lakeside veiw, he scheduled the babysitter for all three, and everything! We did that last night. Then this morning he brought me a carmel frap in. Oh sweet heavens! Also one rose for every child. 5 Roses. Genesis, Alexus, Angel Robert, Angel Maddy, and Diva (aka Kenadie). I thought that was so so sweet. I went to weight watchers today too.. well lets just say DO NOT weigh after you been out to eat on a date night. But to my defense i stayed within my points. :) Anywho.. I am down 6.6lbs in 3weeks. Slow but steady and that is the best kind. Then we went and visited my mom who is still in alot of pain and got an update on my dad. He is STILL in the ICU right now. He crashed last night again on them. So no reg floor for a bit. This really does suck bad. So that was my mothers day. Oh yeah.. Diva decided for mothers day that she would give me 4 POOP EXPLOSIONS! She usually has problems just getting one bowel movement every 3 or so days but i think the bowels emptied out and just so happens it was mothers day. We went through 5 pairs of clothes! LOL!

So sorry for the lack of updates. Life has been crazy still. So we have just been on germ mode really with the diva. When we know she has a procedure coming i am even more on overkill with germs. I am too scared for her to get sick and stuff especially post op. BTDT post heart surgery that was a nightmare in itself. So i talked to the case manager this week and we are still on. We have to get some pre-op stuff done this week. We are so not used to doing all that crap outpt. I dont understand why they just can't do it when we get put in house but of course nothing is that dang easy especially at children's. Did I mention I hate it there?! Anywho. She also has to have an echo done this week. Unfortunately Diva's nurse heard a murmur this week. I about crapped my pants when she called me. Saying the m word in my house equates to the f word in other peoples houses. I am PETRIFIED of the M word. So we had our appt with the pedi on thursday and weight wise eh we are almost 16lbs now! Go chunkers go! She has two teeth that were teasing the pedi. Pedi said they would be in soon. Btw she got one last night/this morning. Happy moms day to me! lol. Anywho. The pedi and i both said echo at the same time. It was really funny. But we agreed we needed to see how that mitro valve is doing. It is the one that likes to regurgitate its food (blood). So needless to say i am very very very nervous about going for her echo. I know it can be the same or be worse. Now if it does have change we are NOT going forth with the tummy surgery. She will be on the FIRST trip to dallas. Kenadie has had her chances at a fair game and we all know how she likes to play her deck of cards so her pedi says one move and down I35 she goes! lol. She is still having purpling episodes also. Again makes me very nervous. But I have come to have a bit of peice about it. Other people not so much. lol. She is also going to have her bladder and kidney scan done while she is there at the hospital. She is having some reflux with them and we need to make sure that she does not need surgery on that also. If so they will do it while she is there.
I personally am not ready for her surgery. I hate having her sedated. With heart kids it is always a bit show when they have to go under sedation. But I know what I am doing for her is the best. Another thing that is bothering me lately is people asking about kenadie's developement. I try and beat around the question but does it really matter if she is doing "tricks"? No she can't hold her bottle consistently, grasp, or roll, but as my cousin pointed out she is kenadie and she is who she is and we will love her for that. She is a happy baby that loves to smile and just light up everyone's day. Trust me if you have met her in person you know what I mean.
I also have not learned on how to not answer a few phone calls. It would help if they called from the same number. lol. But I recieved a call and I dont know if this person does it intentionally but when they call it is so insensitive it is beyond belief. I am almost in tears when this person talks to me. Yeah i try and hang up but I also want to keep calm waters in my family. kwim.
Lately i have had more night mares too. I dont know if it is a mixture of the surgery coming up and the recent phone call. But last night I woke up crying and put my hand on her chest to make sure she was breathing and okay. It did not help that she had a severe sweating episode thursday night either. Well that is about it. I will update after her home health nurse comes out tomorrow. She has one serious granuloma on her gtube. I am very concerned about it and infection.

A Friday update!

Good morning all. Hmm where to start with everything! First this is ms K in her bath earlier this week. She just loved it so much! Oh and btw I blew a raz at my 4yro daughter while we were playing and she did it too! It was hilarious watching K trying to immitate me. Good entertainment for a while. :) Oh and I have to share this hilarious song about the swine flu! http://www.youtube.com/watch?v=t-FV-9HqXH4 Love it!

So we have a date. May 20th. May 19th I have to call C to find out what time are we admitting. then on the 20th we shall have our tummy surgery. We are not sure how extensive this is going to be due to part of it being an exploriatory surgery. So i will definitely be sending out updates all day that day. I have a new trusty laptop! Just hope I remember the battery! lol.

I have an interview on monday for a nursing tech position. Just to kinda get me in the doors. And then I take my nurse entrance exam on may 12th. I am praying this is my time to get in the career. If not it is okay. I will try again some other time.