3 days post op

And the pacemaker is already getting a workout. Last night her pm kept firing off. The nurse got very concerned. She called the attending and they did her ekg. Well they have not a clue why it fired off at 60bpm but it did. I suggested it was bc when she trends down it skips a beat. The resident was like oh no. Cant be it. Um yes can be it. I suggested it to the dr and he was like yep mom I think you may just be right. It detected the off beat and whack spanked it butt in gear. ;) She almost bought her a one way ticket back to the icu. Frankly I am so over with being in the hospital. I am ready to go nuts. So that would not have been plesant.
Today she is dumping, vomiting, and well sweating like you have her in a sauna. I want to say fix the vomiting and let me take her home. They want to nit pick which I am happy about bc we cant do any infections. But resident x seems they know everything under the sun in the past 4 months of their resident career. HA. Resident x and i had a very cordial talk and they found out I am NOT stupid by any means and yes I do understand it is pretty rare which resident x says mom you know not alot of people have it so their isnt a whole lot we can do about it. NO WAY.. i thought that was what rare meant. Again I am to my not pleasant state when people dumb down me.
Today I am full of anexity. I live I dont know how many miles away from nc and we are going to go home with this implanted device. I am scared if something goes wrong or whatever. I am scared for so many things. This brings a new life for us in several ways. As you may remember a pacemaker is not a cure. It is to help her quality of life. It wont stop her from passing out or the hr from getting low. It will stop the heart from stopping though and making it go back to 80bpm so maybe the spells wont reak too much havoc on her body. Which btw the antibiotic she is on right now. It is killing her autonomic system. Playing some very dirty games! ugh.
Right now I could go for a good margarita and some good music. I miss my older children. I hope they understand why mom has been gone for two weeks. I hope one day they dont think I am the worst mom imagineable. I would have done it for them too. I love them beyond words can say. I hope it shows.

pretty sure I am exhausted!

Today was one of the hardest challenges I think I have faced. Going thru the ohs with just my mom. Granted I could call whoever I wanted n talk its not the same. I had to prep myself for the good, badn the ugly. I actually had the thought what if she passes away? What if something happens? My brain was not to kind in the world of me. Heart surgery sucks. I wish we didn't have to put her through this but we did. This was our one shot at a quality of life for her. Not quantity people. This is not a cure n today I had to face that too. I pray his has a good plan for her. I hope the good lord uses her in great ways.

My letter to my daughter. Kenadie. I want you to know I love you with every beat of my soul. You have such fight and will. I hope you can show others just what a champ and inspiration you are. I love you more than life. I am so scared every time you go back in that or it will be the last time I see you. It kills me to watch you struggle. Know I love you and would do anything just to keep you happy n healthy.
Love
Your mom.
this post was done on the night of her surgery.. i have no idea why it says tonight.

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0 is NOT a good number!

So.. we are up in north carolina. We arrived on tuesday. Went to the dr on wednesday. K was having some issues. Her hr dropped severly 3 times during the day. Causing her to wipe out. Then thursday we seen dr kanter. He took a few looks and goes in pt you need to go. So here we are. Thursday night was a pia. We got into our room approximately 7 pm. Then all the admit stuff. Then they decided to wait till 2 am to poke my kid for an iv. Say they are getting her an mri at noon, noon rolls around and bam no mri so she got stuck for no reason at all and was npo. But she did get her echo. Then they drew blood. I could have kicked her ass from here to oklahoma. She dug and dug. My mom told her to STOP! I was in the shower. I come out.. I was like one more and then LEAVE! they weren't vital labs. So she rested the rest of friday with lots of low hr. Then the resident bright and early this morning said mam her alarms kept me up alot last night. Well excuse me ms.. but you are training to be a dr right?! Get used to it. ugh. So the day progresses and she passes out this time she has a spell of asystole! That means 0. Nada! For 3-5 seconds. Then she popped right back out and was good to go. Then she did it again. I wanted a dr to speak with. But of course I got a resident. Much love to them but I want THE dr I flew half way across the country for.
That I have to say was one scary moment. I never thought I would have to push a code button or er stat button but i was pretty close 3 times tonight. I just wish they would get their shit together and get her pacemaker in. This can't be right. ugh.

Ohio trip

Today we are on our way home from Ohio. I am so ready. I love our friends there but I miss my kids so much.
Dr s said nothing has really changed beyond lower number. He wants blood draw to be done in 5 week then be seen in 6. He thinks her TAD is what is kicking her blood. He was happy with her then we went for some rest.
Tuesday we seen the Autonomic group. They determined that she is getting worse.:( her vitamin/amino acid treatment has not been helping at all. They dont want to mess with it until we get done with nc. They agree this baby needs some help with her heart. It will give her the best QUALITY of life. N that is my goal. No one is god n they can't tell us how long we will live. But I want her to be comfortable. So. We head back in a month on Christmas break to do some stuff depending on what goes on with nc.
My mind is shot right now. I am tired. Drained. N just ready to relax some. It's hard hearing she is getting worse even though I have been preaching it this. I just don't understand any of this but what am I to do. I was put on this earth to be her mom.
We have the holidays coming n may not even be home for them yet again. Which is small crap. I just want my older girls to get to enjoy them.

One thing I want to reiterate is that not every special needs child has the look. Blood n organs can't talk. N just nc they act out does not mean they are spoiled or brats. It means they have a medical condition. K gets easily over stimulated n then we are paying for it bc her body n brain can't figure how to process it. So it gets difficult.

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