Free At Last

I had a hard time keeping her awake yesterday, not sure why and not sure why she will sleep at the hospital and not at home. Oh well, it did make things easier for both of us.

We got 30 minutes off the unit yesterday and spent it in the cafeteria. Anna had fun pulling around the wagon. Apparently she didn't think she was supposed to ride in it.

Day one right after the lead placement. She cried for about 15 minutes and then she was out!

Daddy/Daughter Day on Thursday

Having fun in the playroom a.k.a. Mommy's break time

Finally, we are home. We skipped the pediatrician's office. I was pretty sure one more doctor/office in my day just might push me over the edge and turn me into a homicidal maniac. I try really hard not to rely on my mom (a nurse practitioner) or my sister (MD) for medications because I feel it is unfair to them. If something went wrong I would never want them to feel any responsibility for it plus I think sometimes it is hard to really be objective when it comes to family. Today, I broke my own rules and I relied on my mom. (She didn't think homicide was a good idea either.) So we have antibiotics. Here are the pictures from our adventurous week. All in all, both girls handled things very well and I could not be more proud to be their mother. Kenneth and Carly had a daddy and daughter day yesterday and went looking for deer. Carly had a blast and has decided she wants her room decorated in camouflage now. Um, not so much dear. Anyway, I am so glad to be home. I can't wait to crawl into my own bed tonight, even if Kenneth is snoring...

The Neverending Story

Good news! The MRI report is "cystic lesion of right temporal lobe unchanged" and no other new findings. Bad news! Our pediatrician will not call in any antibiotics without seeing her first so when we leave here we get to go to yet another Dr appointment before going home. Dr Malik said he will get the EEG report to Dr Hernandez and we will hear from or see him next week. Until then we are to keep all medications the same. That is all for now.

Almost Done

They got us up at 5:30 and got all of the leads off of Anna's head. I got her bathed and got her hair washed although I will still be picking glue out of her hair for many days or weeks to come. We got her earrings out and all that stuff and then we were off to meet anesthesia. I swear it never gets easier to see your child gassed and know intubation follows. I am a bit nervous too because her oxygen saturation was hovering around 92 this morning which is borderline. She has had a junky cough for a couple of weeks but no fever and her lungs sound clear so I assumed it was just a cold. Maybe not. I am so ready to be home! I will post some pictures from this whole experience when I get home but I am blogging from my phone and can't figure out how to insert a picture. My prayer for today is that the cyst or lesion (it depends on who you are talking to as to what it is called) that is in her right temporal lobe is unchanged or gone. Please join me in continued prayers for healing for Anna. I am not specific about how the healing will come, that's God's deal. Thank you again for your continued thoughts, prayers, calls, visits, and love. I will never be able to express how much it means to us!

Exerting Control

I somehow just erased my signature on this post but oh well, it isn't like you don't know my name by now. Today has actually been a relatively good day. Anna slept in until almost 9. She woke up happy and off to the playroom we went. She played for a few minutes and then just fell asleep sitting up. We came back to the room where she ate a few bites of pancake and then proceeded to fall asleep face first into her breakfast tray. I wiped the syrup off and laid her down. She slept until 2 pm. I talked to the nurse because I was worried about her sleeping so much. She just could not keep her eyes open and she has never been like that before. We reviewed her medications and they are the same here as at home. She said it was just stress. I don't really buy that but whatever. She finally woke up and although she still looks kind of drunk, she has been playing nicely since. She is funny though. I guess she feels so little control in this situation that she has decided to exert what control she does have. That has come in the form of refusal to speak. She will say a few words to me and she spoke to my friend Amy (because she brought tacos and queso last night) but when it comes to staff she is mute. She will flash a cute smile but that is it. The anesthesiologist came by earlier and said her MRI is scheduled for 8 am. I hope we get to go home soon after that. Not much else going on here. Just sitting around waiting for, well, who knows what we are waiting for...

4am

Anna slept like a rock (and so did I) from about 9:30pm until 2:45. That's great except I was beginning to worry that she wasn't going to have a seizure. It's not that I want seizures but we really need them to happen while we are here so the doctors can get a closer look at what is going on. She laid awake until a little after 4 and then I finally crawled into her bed with her. She is used to sleeping with Kenneth and I so I thought that might help het fall asleep. Indeed it did. She was asleep within about 10 minutes. Then as quickly as she fell asleep, a seizure started. I felt sadness but relief as well. The nurses came in and messed with her but she was out. So now here she is sleeping soundly and I am wide awake. Since her seizures have been clustering I feel like I need to stay awake to catch the next one.

Getting Settled

We got here a little before 10 and so far things have gone quite smoothly. Registration is always a breeze and the staff has been great, as usual. I just met with Dr Malik who is the neurologist on this week. He seems nice and quite smart but I miss Dr Hernandez. That was the only part I hated about moving the testing up. It meant our neuro wouldn't be here. He will ultimately make any final decisions about treatment though. What I think is one of the worst parts of an EEG is getting the child hooked up. It went so smoothly today though. She cried for about 10 minutes and then she fell asleep and slept through the rest of it. We got back to our room and she was napping nicely until the nurse practitioner woke her up. That was the end of her nap and it ruled out one for me too. So now we are in the playroom and she is happy. I am already exhausted and only a few hours into this but I guess it has to be done and it is honestly not any more exhausting than nights at home have been lately.

Moved Up

Anna had another really bad night last night. I called the neurologist's office again because they want to be notified of her seizures. They decided that her EMU stay cannot wait until the 16th so she is being admitted this Wednesday. We will stay until Friday and she will have her MRI on Friday. I am nervous and relieved all at the same time. I just want it to get better!