"Miracle Girl" or "Trouble"

Lucy has a new nic name in the NICU.........."Trouble" This was adopted on Tues. at noon when she sent everyone running with yet another SVT. It had been since last Fri. just a few hours away from 5 days of no SVT. They had taken the IV out that they had put in last Thurs. night when she started having them again. So they did the bag of ice water smothering her face a few times, tried gagging and while they were doing those things two nurse practitioners were working on getting another IV started. They tried twice in her hand then once inside the elbow. Her veins were squirming all over the place. She was crying and whimpering and I was holding her other hand and helping her keep her pacifier in. They ended up getting one in through her vein in her scalp. If was not fun. Even less fun was realizing how many times this had been done before when I was not there and able to talk to her. As soon as they got the adinison in everything was better. Then everyone was scratching their heads. Dr. Cheng, her Cardiologist, pulled out his last card for the current medications. He doubled the dose on one of them. The only other option if she does have another on this medication is to replace with a stronger medication that has a fine line with the dosage between fixing Lucy's problem and causing a different arythmia which is more dangerous. There was a nursing student named Chris there shadowing Mary Kay, Lucy's nurse that day. Mary Kay had said in the morning that Lucy was flirting with Chris because she kept starting at him while she was getting her diaper changed. Later after she had been converted from the SVT Mary Kay was pretending to talk for Lucy and said ,"well, I was just thinking with Chris being a student and all that he needed to see something more than bottles, diapers and sleeping babies." It was very funny.

She is continuing to progress with her eating. She has been waking up and crying sometimes before it is time to eat. Until a couple days ago she would be woken by her diaper change, temp. and blood pressure read and then she would start eating. They will probably take her feeding tube out tomorrow and let her eat as she wants and see how she does. She took her feeding tube out on her own earlier today. She had a sneaky strategy. I was changing her diaper. She sneezed and it moved out of her nose a little. I reached up to try and push it back in a little and at that moment she pooped again but her diaper was open because I was still cleaning her. Then my attention immediately went to the mess that was now spread beyond the perimeter of the open diaper and that is when Lucy went for the feeding tube hook with her hand and pulled the thing all the way out. She was not happy with the nurse putting it back in for her.

Dr. Baker would like to see her go 5 or 6 days without an SVT on the new dosage of the one med. That will probably also give her enough time to get all the way up to speed with her feeding. From Tues. when they increased her dosage that would put us at Monday as the possible going home day.

Candace, the pediatric ER nurse from Salmon Creek that had called us last week dropped by today to say hi and see Lucy. She was happy to see how healthy and peaceful Lucy looked as she was sleeping. If we do end up having to take her to Salmon Creek once we are home due to her starting an SVT that I cannot stop Candace assured me that everyone knows her and knows what is going on with her so they will be able to do what she needs right away.