Heart Cath 11-4-11

Hi everyone,

I just put a VERY OVER TIRED, OUT OF CONTROL toddler to bed. It required laying next to her in her toddler bed rubbing her ear and telling her that no one was going to hurt her when she woke up. I am really tired and might not make a ton of sense but it's been a bit since I wrote last so bear with me..

First of all the important stuff, her lung and artery pressures are all still normal and her cardiac output is "good" as Dr. Turner put it so we shall avoid the possible transplant talk once again, phew:) As usual I LOVE OUR DOCTORS AND NURSES. Dr. Turner is very laid back, easy going, never seems to be rushed or in a panic and even if he's busy he really takes his time to chat and make us feel comfortable. I never worry about Charlotte's care when he, and his cath team are with her which is a huge relief in the scheme of things..

We were second in line today so things took a little longer than usual to get going. The nurse let her pick out a toy to play with while she waited and she had a great time with the Mr. and Mrs. Potato Head. She took almost all of the initial oral sedation medications but the middle one of three is disgusting and the third med she pretty much spit entirely out. Luckily they give her the important ones first and the last is just an anti-nausea med. IV team never showed to give her an IV so we actually took her up to the cath lab to put it in. Everytime before this she has been pretty well out of it once we got up to the lab but today she was chit chatting with everyone, laid down for her IV and although she tensed up a lot didn't even cry when the nurse did it. Once they gave her the IV sedation she was out in about one minute so Jason and I kissed her and left her in their hands. We got there at 8am and they took her back about 11am. It was probably only a little over an hour when our pager went off and we arrived back to the lab to see her. She was already awake which again is a first, and was crying a bit, still pretty groggy. They apparently had to give her a half more dose of the sedation meds and even that didn't keep her down.

I brought my Biology to study because she has always slept for at least an hour after the procedure but this time she was up and somewhat alert so once in the recovery room she sat on my lap half laying down and we watched Curious George as the groggy, drunk, bossy, and moody Charlotte came down. We have to wait four hours after the procedure and she's supposed to be laying down for most of it but in true Charley fashion that NEVER happens. The hardest part about these days besides the no sleeping the night before, getting up early, not eating or drinking, pokes, etc., is keeping a roving lunatic of a sedated toddler occupied. She can't eat or drink anything from midnight on so you can imagine that on top of being cooperative all morning while being poked, prodded, and moved around in a strange and scary place is enough to send her over the edge.

After four hours it gets maddening, and she by that time is exhausted and pissed off at EVERYTHING. Jason was trying to draw a family of ducks on her magna doodle and he just couldn't get it right and she was throwing a fit, if I moved the DVD player one inch to the right she was throwing a fit and smacking it back into place. Hours of this go on and because we are evil parents we start to just purposely do stuff to tick her off because we might as well laugh at her antics while she is so over tired and out of control. In the car on the way home we kept saying you need a nap as she was slapping and complaining at her Minnie Mouse balloon and she would scream "NO I'M NOT TIRED" at us, but as soon as I started videotaping her she was all quiet and coy in her soft little voice. She's hilarious, that's all I can say for that child, cute, cunning and she sucks everyone around her in.

Dr. L'ecuyer came in to see her and she told him all about Halloween, her Jessie costume, preschool, and CANDY. He said her BUN and creatinine (kidney function) were good, and we upped the dose of one of her meds quite a bit so we'll see what happens with that. Dr. L'ecuyer is awesome, he and Dr. Turner are excellent examples of the team they have there. Again always making me feel at ease that we are at the best place for her, that they are knowledgeable with her disease, answering my unending curiousities about it and still stumped at how well she looks compared to how sick she is. I like that they don't act like they know everything perfectly but that they treat each child differently because each child handles the disease entirely different. Jason and I were driving home and we both agree sometimes they look at her, shake their heads and say "it's amazing when you look at how well she's doing". It kind of chokes me up really, we tend to think these people are God, instead of doing Gods work but it's never perfect science, things never always go according to plan and I'm okay with that. I just know that they care about her and us, are incredibly knowledgeable, and if they don't know something they'll take the time (quickly) to try and figure it out.

Charlotte should have left us a long time ago and I take pride in knowing that the people helping me keep her here work with me, not above me if that makes any sense.

She SO needed a nap and I was shocked that she didn't fall asleep on the ride home. She was over the top hyper by the time we got here. Acting rambuctious, aggressive, a drunk person really but kept jumping, dancing, and climbing as if she were sober so my Mom just tried to corral and grab her up constantly to protect her from herself all evening. At bedtime she just couldn't get settled, was fighting us, and kept asking for cake for some reason. At one point she said she didn't want to go to sleep because she didn't want to get hurt. I'm wondering if maybe she didn't wake up in the lab earlier than expected and that's why they hit her with another half dose of sedative. I hope that's not the case but she's never acted like that before. Regardless, I just laid with her, rubbed her ear, and tried to reassure her that there would be no more ouchies for awhile and definitely not when she woke up tomorrow.


All in all, she was phenomenal as always and everytime we face things like this her strength and endurance never cease to amaze me; and Alaina and Jake's belief that everything will be okay with their sister gives me hope. We laughed because Dr. Turner was saying goodbye and said "nothings going to keep Charlotte down", and while I am still scared to death of the future, and it feels more unease now than ever, I also feel capable more so than I have ever felt before. I have always been told I was a good Mom, a patient Mom, but to be told by her doctors that they aren't sure how she's doing so good is a force unlike any other. Not just for myself and Jason either, everyone of you who read our story, or send me a comment, or continue to be my friend when I'm a raving lunatic. You who ask how she is, or help out with our kids, who pray faithfully, or who give me so much without asking much in return should feel a force as well. For the first time since Charlotte's diagnosis I have gained a sense of girl power unlike anything I've ever experienced before this happened in my life. As most things seem to be, sometimes I'm not sure it's a blessing or a curse but it feels good to have confidence that I can take care of people so well, and that I can help other people see all of the good they have even amidst the bad. I'm not perfect and everyday is a struggle to stay in the here and now, but while I can't control what happens to someone, I can absolutely do my best to care for them while they are here. To encourage them to be a better person, to take better care of themselves, to nurture their spirits, to volunteer any special gift they can. I literally can NOT WAIT to work at this hospital and be part of such an awesome community.

When Jason and I were eating our usual Subway cath lab lunch, I was looking out the window of the hospital thinking of how we got here to this place. How three years ago this hospital, and the Childrens Cardiomyopathy Foundation meant little to nothing to me. Now I sit here a lot of days brainstorming ways I can help them when I get some more free time. It's not just the hospital either, we are all part of so many communities that we don't realize, all of the places where we know our way around, feel comfortable, have friends/family. It is up to us to care for those communities no matter how big or small they are.

When we are there now it's comfortable, we know the drill. We can tell other families where things are, or what elevator to use, share tips and tricks for getting a child through a test, etc. We forgot change for the vending machines and I said "we can go to the 4th floor they have the credit card vending machines", something as simple as that made me feel at home. We are forever connected to it, and the people who not only work there, or frequent it but also to the people who are just starting their journey with it. That is how we take care of each other, we nourish the communities we love, because in many different ways some good maybe some bad they nourish us too. Sometimes in ways we can't always see clearly until we take off our rose colored glasses:)

Love to all of you, thank you for always being here to support me:)