This pic was taken while at an appointment in cardiology, she picked these glasses from their prize box and then wanted me to take her picture so that she could see herself with them on...silly girl.
I have been meaning to post an update this week on how things have been going, I guess Miss Lucy decided to take matters into her own hands as she has been admitted to DuPont tonight with fevers. Times have been tough when it comes to our littlest, she has just not been herself lately. Her bad days seem to outnumber her good ones. We have been praying for answers, and now more than ever I find myself praying that if we find the source of her fevers, perhaps we will be able to put to rest some of our fears and concerns for some of her other issues.
Lucy and I spent most of the day at DuPont believe it our not, we had an appointment with neurology in which we discussed adding Vimpat to our list of anti-seizure meds. It was a frustrating appointment on many levels, but we have a plan and it looks like we are going to be moving forward with it. Talks of just how and when we were going to start the med were had, and now it appears that she will be able to get her first dose in the hospital after all.
This afternoon when we arrived home from the hospital with one minute to spare before the school bus arrived in front of our house, Lucy was crying to me that her insides hurt and that she wanted to lay down. When I laid her in her bed and connected her to her to her pulse ox it kept alarming for high heart rates. I sent an e-mail to the good doc that simply stated, "Can you please call me..." When he called back he said that he was worried because I never just ask him to call me. We discussed her current issues, and came up with a plan, sort of. Lucy went and changed the plan when her temps started to soar. We are always worried about sepsis when it comes to fevers and Lucy, so I quickly gathered as many things as I could think we would need for the night all the while trying to coordinate who was going to get the kids and where they were going to go. Megan was at dance, Sophie at music, and Jack had just arrived home from science fair when all of this was going down. It took what seemed like an act of congress to make arrangements to get everyone picked up and in one location. Thanks to all of you who were a part of this tonight, we could never do this alone!
Our nurse Helen was just coming on shift when Lucy's temps started to soar, she and I packed Lucy up and brought her to the ED. Drew met us here just a few minutes after we arrived. We have been admitted to our regular home away form home where Lucy was greeted by the wonderful nursing staff, we have started Lucy on our typical protocol for fevers. Cultures are cooking and labs were drawn, Lucy's white cell count is up considerably for her which has me even more concerned that what we are dealing with is really stirring things up in her. She is not feeling well, and is in pain, but has finally found rest. We are waiting for radiology to come up to take an x-ray of her belly as she has been complaining of increased belly pain. Afterwards I am planning on getting some sleep as I believe that we have her very complicated med schedule under control :).
I will update more tomorrow. Thanks as always for your thoughts and prayers, love and support. Like I mentioned we could never do this alone, nor would we want to!