Wednesday, September 30, 2009

CV ICU Day # 6 - Light Show Spectacular

Last night and today have been one giant blur. I haven't been in the best of moods today. Yesterday morning, Lee left the hospital and over the course of the day he developed a tickle in his throat and some other ailments. To be on the safe side, he stayed home last night which left me at the hospital with Elle. I wasn't too worried - since she came off the vent, the huge breathing machine has been taken out of her room so there was plenty of room to pull up 2 chairs and sleep in them. Her night was horrible - she was up every 2 hours and the only way to get her back to sleep was to put my hands under her back and rub her back. This took at least 30 minutes just to calm her down. I really think she has opposite reactions to pain medications. They make her go crazy - twisting and stretching and wiggling all around. Needless to say, I wasn't the most pleasant person today due to my lack of sleep! A few good things happened today. First of all, Elle pooped! This is great - except she hasn't done it again since this morning so we are praying for poop! Elle also took a few good naps today which was good. Her wonderful nurse today, Meghan, snagged this really cool light display for Elle. Since she loves lights and anything that lights up, it was a perfect addition to her room. They started feeding Elle a little bit today. They started at 15 cc every 3 hours - hopefully they will be increasing it over the course of a few days. I don't know - there is still something I can't put my finger on. Elle isn't acting herself. I just have this feeling that she is trying to tell us something is hurting her and we can't figure out what it is. I already told the doctors that she hates morphine, versed and methadone. She goes crazy when she gets them. She desperately needs to go to the bathroom. Her heart rate is occasionally dropping and so are her oxygen saturation levels. I just have this feeling in the pit of my stomach that there is an underlying cause for all her additional pain and stress. One of the doctors today put it perfectly, he said they don't want to give her pain medicines and miss a smaller detail. I agree with him but I just don't know what to tell the doctors. Elle got an echo today - and maybe that is another reason why I have this anxious feeling. We didn't get the results today which makes me nervous. I'm praying that her heart looks great and she doesn't have any problems with her heart that would be causing these other issues as well. I just pray for peace for Lee and myself. He made it back up to the hospital this evening. We got a room at the Ronald McDonald house for the night. Lee helped bring my stuff down to the room and then went back up to be with Elle. He has a feeling something isn't right too. I just pray for peace for us and wisdom for the doctors. I pray for Elle's continued well being and for peace to wash over her. I pray that she overcome all the obstacles she has in her way and return to her beautiful, smiling, laughing self. I pray for pee and poop! I pray that Elle just feels better!


amy johnson said...

You and Lee have to be her voice!! If you for any reason think something is off, don't let them sweep that feeling under the rug. You two know her better then anyone else and are her biggest advocate. The doctors have her greatest well being at heart, of course, but they don't have the history with her. Did she act differently after any of her other surgerys? You also have to remember what her little body has just been through, even though she is young and resiliant, it was still open heart surgery. She is also in the best place possible and all of the doctors know exactly what to look for to help these little people. We will continue to pray, let us know if there is anything else you need!!

Jean Beyer said...

I'll pray too.