Friday, November 1, 2013

Tipping point,

I despise the saying when it rains it pours. Sick baby. Took her into the ER last night when she woke up with all most no voice, and a cough that too me sounded like RSV and sats in the high 60's. Just two hours before when we put her to bed she was fine! We did not trick or treat or take her to swim yesterday cause she had a slight fever the day before but otherwise no symptoms. Took her into the ER at around midnight. I HATE our local hospital ER. There is absolutely nothing like a children's Hospital. I love CHLA. Here the ER is dirty, I mean pea tree dish dirty. I want to burn my shoes that I wore. Plus the drs and nurses treat me like I am just some young naive girl who has no clue what my babies saturation should be and precedes to tell me that if she has RSV they would do nothing differently so there is no need to test her!?!? EXCUSE ME??? At that point I put my foot down and said umm, if my daughter has RSV we will be on the road to CHLA before you get a chance to discharge us. His response is " we will do a test then"( clearly annoyed with me) and darts out of the room without another word. Did I mention how much I miss CHLA? Oh and lets not forget to mention our RN comes in with a mask on telling us all how sick he is and then coughing right at me ( yes he was wearing a mask but turn your head or please DON'T come to work in an ER sick) As we wait two extremely drunk underage kids come in and proceed to throw up for an hour in our shared not so private bathroom. That was lovely to listen to laying there with my sick baby for. Just when I thought things could not get worse dispatch calls and says they have a trauma coming in, what you ask...a multiple gun shot wound.  We do not live in a large town, this is not a typical night in the ER, gun shot wounds that is. They finally come in do her X ray, do an RVS swab and notify us that her RSV swab came back negative ( best part of the night) The Dr comes in says she might have a slight ear infection and that he is going to put her on amoxicillian.......really!? I had JUST got done telling them her medication list. She has been on amox twice daily since she was born! He says " oh right, okay well continue that"- ( yes thank you, cause if you said otherwise we might have stopped it????) Why must we be so far from CHLA!?!?  Discharged, with no answer home by 4am. Ella up at 6, Brady off to work at 8 and now here we are. Tired, worried, annoyed, sick and oh did I forget to mention Ella broke my phone yesterday? Yes I am having a full blown pity party for myself right now. I try to stay positive most of the time ( try being the key word) but I need a pause button. I am still trying to get used to this damn diabetes crap and that alone is making me a grouch and this is just adding fuel to my already large fire. Rant over, for now. Happy Halloween!

Saturday, March 16, 2013

It has been a while...

     For the last couple weeks I have been having a harder time then normal. While Ella is doing great, I am finding myself more sad than scared lately. The other day while Ella and I walked to the grocery store we passed the elementary school down the street from us. All the kids were out playing on the playground and in true Ella fashion she waved to ALL of them, telling them "hi!" and then proceeded to just stare at them and smile. This happened for a good five minutes as we traveled around the entire school. It was so sweet but at the same time completely made me burst into tears. It was as if she was wishing that could be her, she was in Awe. At one point she just laid her head on the tray of her stroller and gazed and smiled, watching them all play. It broke my heart. I do have very high hopes for my daughters future and want to believe she will live a VERY long life, but sometimes things like that just get to us heart moms. Things like, will my daughter ever go to school, have friends, swing on the monkey bars, or sit on a swing  talking with her first best friend at recess? For instance tonight when I laid her into her crib with her bottle and she waved to me as I left the room. It made me not want to leave. I know she was just saying bye because she was going to bed. I always go back in and tell her "no baby it is not bye bye, just goodnight" The problem is I still have that fear of every time I leave her that it could be the last, it really messed me up.... blah  However  today was a special day and reminded me of how strong and determined our HLHSers are.
   Today Ella and I drove down to Ventura, about two hours from us to celebrate one of her heart brothers 2nd Birthday!! Lucas is HLHS as well. To top off this day there were also six other HLHSers at the party. One of them was Jeni Busta, being one of the oldest HLHS survivors at 28 years old. Many of you may know her she and her husband have stayed with us many times as well as been to many of our events. Today our 5 HLHSers under the age of five, celebrated one of their own at a park. ;) They ran ALL around, chased bubbles, laughed, swung on the swings, fell in the dirt, ate way too much candy and did everything a "normal" healthy toddler would do. It was amazing to be amongst so many others that knew exactly what we have gone through and too just see how well they are all doing..... that is priceless. There were five heart moms, five heart kids and one heart adult ;) all thriving, all LOVING life, wearing their moms out and eating lots of candy! HA! Not one stood out amongst the MANY other kids playing on that playground. ( okay maybe a few of them were a little blue from the cold, but hell we'll take that!) So my point was today was an awesome day, a typical day that any mom would spend with her kids celebrating their friends birthday. Taking pictures, singing happy birthday, and eating cake. This bunch just happens to be extra special, and damn I am so proud of all of these miracles and their families<3
        Thank you for sharing your special day with all of us sweet Lucas!
 Here are a few picture of our warriors<3

                                                        On our way to Lucas' 2nd birthday!                              

Trying to get a good shot of all our warriors! lol  Jeni Busta ( HLHS as well) you sure did try!! ;)


                                                                  LOL I have no idea!

                                 Ella and Townes swinging ( Townes is HLHS post Fontan)

                                                             On our way home<3
                                                         Amazing day, so grateful! <3