Saturday, June 28, 2014
so on wednesday we went to the children's hospital to have an 24 hr eeg. that went fine we caught 3 seizures so thats good. the drama part comes from the vns incisions again. wednesday her neck started to look nasty and her chest started to swell around her incison. the neuro team at the childrens hospital called infectious disease. infectious disease came up saw her and called to the hospital in our home city and got the records from the last time. based on that their consenses is that the leads are infected and they need to come out. and the reason her chest is swelled is that their is a pocket of infection there as well. well they called neurosurgery and neurosurgery cant take them out the surgeon has to. they called the surgeon and he told them to tell me to call and get her scheduled. i assumed she would be getting them out sooner like this week but nope he scheduled her for the 28th of july. so then i called the neurology nurse and told her and she is going to talk to the vns rep and the surgeon on monday and see if she cant either get him to remove them pronto or put her on antibiotics. the thought is that its staph infection like before and if she doesnt get it taken care of shes going to get really sick. my thought as well but i cant seem to get the stupid surgeon to listen to me. ugh
Saturday, June 21, 2014
so a few days ago lexi got what i thought was a diaper rash. so i started using cream and even antifungal cream when the diaper rash meds weren't working. well wednesday night it got so bad she started crying and was bleeding from it so i got her into her pediatrician on thursday. her dr took one look at it and was like thats strep. i didnt know you could get strep on your body but i guess so. so now lexi is on 10 days of antibiotics. just frusterated since she just got over a staph infection last month and now has strep. other than that lexi has been good. shes in a phase where she has to change clothes 20 times a day no joke. its annoying but at least she puts the clothes back in the drawer instead of in the dirty laundry lol. shes also not sleeping at night not sure what is going on with that but hopefully she begins to sleep again since the less sleep she gets the more seizures she has.
Sunday, June 15, 2014
im not good at keeping up with this blog as you can tell but then again i doubt many people read what i write anyways. since the last time i wrote lexi has stayed out of the hospital. shes had seizures but they are controllable. we had to take her off of depakote and switch her to topamax because of the major anger issues caused by depakote. it was horrible iv never seen lexi act the way she did on depakote. we are scheduled for a 24 eeg down at the childrens hospital on the 25th and then we see a intractable epilepsy dr on july 3rd. im anxious but hopefully we will get more answers soon. this week we see the neuro and developmental ped and i have a few things i want to talk to her developmemtal dr about so its good that the appointment is this week. besides all of that she has finished her first year in kindergarten. she will be going and repeating it again next year in hopes she will progress enough. im glad its summer and that shes able to have some fun. not sure why the other pics on my blog disappeared but i will be posting some