April 10, 2011

Hi everyone,

Well if you don't already know through facebook, email or a phone call from someone close to us Charlotte was admitted to Children's Hospital today. I brought her to the ER this morning and she is currently staying the night in the old familiar ICU here. She started vomiting Friday evening, into Saturday morning and then seemed to be on the mend, still laying around, not active but got up a couple of times yesterday and walked around. She bossed me around a couple of times Saturday night so I thought today she would be golden. She stayed up late and slept in until I woke her at 10:30 in the morning. She seemed a little pale, her diaper was dry (totally unusual, they are usually HUGE in the morning) her color not that great in her fingers/toes but she ate a bagel while laying on the couch and drank a glass of milk. She really seemed out of it though, after her bagel she just kept looking worse and telling me she was scared. I couldn't get her to stand up or walk, and her feet/hands turned purple and were cold. From all of this Mom training I've gathered during this process cold/purple hands and feet are not a good sign and when I pinched them the blood was slow to return. So of course I started panicking, and called Jason at work to calm me down. I gave her another half hour to perk up and then literally threw all of the kids in the car and called the on call cardiologist on the way down to Childrens. He agreed her symptoms were worrisome and to the ER we went. It took most of the day, 2 x-rays, an EKG, an ultrasound of her intestines, IV, and labs to figure out the only thing we're sure of which is she is dehydrated, and her intestines are sluggish.

Dr. Mastropietro came down to the ER to tell us that some of her numbers were concerning, and they were admitting her to his care in the ICU. I was sick to my stomach all morning and of course in the ER they don't tell you jack shit until you start bugging them. I was unusually patient today, but relieved to hear from Dr. Mastropietro because even if its scary news I just know I trust him, he's honest with me and fills me with information which I crave on days like this. I am not good with being told only parts of the story and I like to have ALL of my questions answered until I'm satisfied and like Dr. L'ecuyer he doesn't seem annoyed by my being that way. He's great!!

He reads these blogs sometimes so I want to assure him that I am not a mental mess all of the time, only on the days when I post to this blog. So everyday you don't read from me, is usually an okay day, give or take some of course. This is just a large adjustment to our lives and we still aren't pros at it as was evident by my absolute terror all morning. I told Jason that the hardest part is thinking that every little thing, every reason for an ER visit could be something that they can't fix and I don't know how to feel safe again in that regard. I remember with Alaina and Jake I never felt like they were going to die when I had to take them in the middle of the night with croup, but with Charlotte EVERYTHING feels that way. I just pray it gets easier over time, that's what I pray.

He isn't quite sure why Charlotte is dehydrated, and her symptoms of vomiting, not eating, the kidneys being dry can all be signs that her heart could be declining again so they have her on milrinone an IV medication to help assist her heart, and are giving her fluids to help with the dehydration. Her color returned almost immediately upon entering the ER, go figure. She was very lethargic today and honestly slept most of the day, she didn't fight any tests or pokes because she was just too worn out. I have never seen her like this which was incredibly scary, even when she suffered the dehdydration last year with her heart cath she was not how she was today. Even almost two years ago when we brought her to this same ICU in heart failure she was more active than she was today.

The numbers related to her cardiac side of things were actually not bad and Dr. Mastropietro is confident that this is not heart related (99%). He doesn't know if it was a stomach flu because aside from the first few hours of vomiting the episodes became irratic where usually you just keep throwing up even if nothing is in your stomach. The only other option that has been thrown out there is bladder infection which I just heard was negative. When they did her ultrasound the tech said she had a really full bladder and yet she didn't urinate the entire day. They started her milrinone and we had just discussed doing a catheter to test for a bladder infection when she finally urinated. And it was A LOT, so today was a banner day of being thrown up on and peed on:) As I sit here writing this in the same clothes, the nurses and doctors must want to vomit when they talk to me. LOL. GREAT DAY:)


Within the last few hours she has really perked up, still tired, still whining a lot but talking occasionally. She's watched movies and read books. She put up a fight when they did her catheter and her cheeks are rosy, rosy. So whatever was happening, the medications are helping. I won't know more until tomorrow and we may be here another night but hopefully we'll figure this out as I am not ready for the tranplant chat just yet. I admit after the initial terror of the morning once I spoke to Dr. Mastropietro and he told me her BNP number was only 111 my fears calmed and I realize no matter what happens we'll get through it but it takes a toll mentally and physically to get through these days.



Jason starts a brand new job tomorrow so he went home for the night, so I'll be going it alone tonight. She seems improved, still cranky, but better. Thank you for all of your kind words today and facebook posts of encouragment and prayers.

-C-