Friday, July 25, 2014

restless night

so after surgery yesterday lexi was in a lot of pain. i know she had surgery but every time shes had surgery before she was fine after ward. but yesterday was hard to keep up on the pain med. she didnt sleep that much last night and then was up at 2 playing. today was another day of pain which im happy i cancelled her therapies so she could relax. i'm hoping she can sleep tonight and the pain will lesson once i change the dressing tomorrow.

Thursday, July 24, 2014

surgery is done and a lesson

lexi did good during surgery. the surgeon was able to take the whole wire out of her neck. he thought he was gonna have to leave some in since it was coiled around her vagus nerve but he was actually able to get it out. he also opened up her chest incision and when he opened it up there was a ball of grannulation tissue so he removed that as well and cleaned it up. she's in pain but doing ok. the surgeon when he came to talk to me said that hes thinking of writing this up because hes never encountered it before. i told him he should because it would be a learning experience for people. i told him if there was a first for something then my child would have to be the one to do it. the lesson i hope he learned though is i hope he learns to listen to parents better. i may not be a dr but im with my daughter and i know when something isnt right. when this whole thing began i told him and the neurologist that something wasnt right. how do you go from no gran mals in 2 yrs to the worst ones iv ever seen. their answer was oh its her epilepsy getting worse. true her epilepsy is bad but the infection made it worse and they made her suffer. and then when i asked him to just take the leads out hes like we dont want to do that incase she wants to use the vns when she gets older. if shes allergic i highly doubt there is a chance she will be getting another vns placed. now let me say hes not a bad surgeon. he does listen i think he just wasnt exactly sure what to do. i felt at ease when i sent her into the or with him and i know he did what was best for her.

Sunday, July 20, 2014

back from the er

so friday lexi was really tired acting well around 430 her incision on her neck swelled up with puss. then less than 5 minutes later it busted. so i called the after hours number for her surgeon and they called me back 20 minutes later. he told me to just put a bandaid on it and put some bacitracen on it. well saturday it was bleeding and was hard to keep a bandaid on it . i figured eventually it would stop bleeding. well this morning lexi woke me up at 530 and was covered in blood. so i put gauze on it and took her to the hospital. the er dr cultured it, took blood work and called the surgeon. her surgeon said we need to be patient and wait until thursday when he can remove the leads from her neck. the culture shows she still has staph so they switched her antibiotic to keflex and sent us home. i'm so over this staph and the whole wound not even healing. im praying that when they remove the leads that her body can finally heal the way it needs to.

Friday, July 18, 2014

surgery is sooner

this tuesday we went and saw lexi's surgeon who placed her vns. he took one look and said he for sure wants it out and sooner if better. so we scheduled her surgery for thursday the 24th i believe. i just know its this coming thursday lol. he has booked the or for 2 hrs and hopefully it will be outpatient. if for some reason she needs to be inpatient he will have to have her transported to the hospital since he is doing the surgery at the surgery center instead of the hospital. the dr also decided to put her back on antibiotics in hopes that if it is infected it will help. im nervous for the surgery but hopeful this will help her feel better. wednesday we went and saw the dietician and she said that even though lexi has gain a little weight she needs more so we are still doing 2 feeds through the gtube. we are hoping by august 5th she will have gained back the weight she has lost. we will see though.

Saturday, July 5, 2014

long week

on monday night we lost power from the storms we had. we assumed we would get power on tuesday but unfortunatly we didn't get it back on until friday afternoon. let me tell you as soon as we got power i started jumping for joy. i can do without tv but not electric or water. on wednesday we headed down to rileys for an appointment with an epilepsy specialist. unfortunatly that appointment was very nerve wracking. first the dr was behind then she came in and freaked out on how many seizure meds shes been on and how shes not even on the right seizure meds for generalized epilepsy. but the thing that pissed her off the worst was her vns site. she totally freaked out went off on me saying i needed to stand in the surgeons office and not leave until something was done. sad thing is iv been trying to get something done but the surgeon is taking his sweet time. anyways she gets mad and calls the surgeons office herself. well the surgeon wasnt in the office and she went off on the nurse and hung up. the nurse calls me and asks me what does that dr want done. i told her she wants it removed asap and the nurse said well the surgeon is out of town for a week and he has nothing sooner that the 28th. i then ask what about antibiotics since they are pretty sure its infected. so the nurse calls the surgeon before he gets on the plane and he puts her on batrum. we also see the physician assistant on tuesday to see if the surgeon needs to find a day sooner to remove the vns leads. the antibiotics arent helping but if its staph that antibiotic wont work. the epilepsy specialist did say though we are to wean her off vimpat and start her on lamictal so we are doing that and will see her again in 4 months. glad something is being done for her epilepsy