Gonna keep on keepin' on

So... I haven't blogged for a few weeks (mostly due to my lack of blog-worthy material), but here we go again. I am still holding down the fort (or apartment) while Em and Maya are in Wyoming. Em has been getting steadily better, and has now gone a month without a seizure. Though the recovery seems near complete, she is still easily fatigued and doesn't know if she is yet able to be alone with the little-girly all day while I'm at school/clinic. People keep asking when they are coming home; the answer is...well...I don't have an answer. We origionally planned that they would come home after the neurology appointment on Feb. 17th; but if she does that, less than 2 weeks later, I will be gone for 10 days interviewing for a residency position. We are thinking that she may just stay there until after I interview, and we can just all come home together. We will see.
So after a lot of complaining, I finally got a video of Maya taking a few steps. This is from a few days ago...I think Em said 4 steps in a row is her personal best.


This one is Maya doing a little dance while playing with her toy dog.

Lately, we have been able to communicate despite the distance thanks to the magic of technology.

1200 miles have never sucked so bad...

School has started for me again, and with clinic hours this semester I am gonna be really busy. Emily and Maya are still in Wyoming until Em is recovered enough to come home. Yesterday the headaches had gotten bad, and she was vomiting again, so her mom took her back to the ER. They did yet another lumbar puncture (spinal tap) to check the pressure in her head/spine. Normal pressure is apparently 15 or so mm/hg. Last week the pressure was up to 47, and yesterday it was 52! After the LP her headaches get a lot better. This time her white cell count is finally normal, so her body is actually winning the battle. She was released with more medication (this one to bring down the pressure). She went home and slept most of the day and night (ativan is a good drug). She is feeling a little better today, but exhausted as usual. Maya has been getting better and better at standing in one place, and today actually strung 2 steps together. Unfortunately, nobody had a camera turned on, so I will have to wait to see it. Her favorite words are: mama, dada, kitty, wow, and almost says uh-oh. She is learning patt-a-cake too. Even though this sucks for me, our parents are really enjoying the bonus time with Maya. 1200 miles is way too far away!
-Branch

Stagefright...

I get the feeling that Emily has stagefright, and is shy about having a seizure here. She has been off her Kepra for 2 days now, and has not had an "event". The Doctors think she looks a lot better now, and I agree. She is about to go for one last MRI, and if nothing comes back abnormal (besides the usual abnormal mind she has always had) they will release her. They are going to put her back on Keppra again to prevent future seizures... I can't help but think she is going to have one just after they cut her loose. They took off the EEG leads, and she has a lot of work to do getting all the glue out of her hair. She actually allowed me to take this picture full-well knowing it was going to end up here on my blog. Em is in good spirits, and though it will be a few weeks or more until recovery, she will be fine. Thank you all for caring, calling, texting, praying for, or just thinking of us.... It will (without a doubt) be a Christmas vacation to remember forever.
-Branch

Change of Plans...

So this morning the doctors came by for rounds as usual, and the plan for Emily was changed a bit. As I had said in the last blog, Emily is on twice the Kepra (anti-seizure medication) as she was before this round started, but they were looking for seizure activity on her EEG. This morning the docs said that they were going to cut her Kepra by half so she could have a seizure or two. They ran this by the epileptologist (a neurologist who specializes in seizures) who told them that it was a stupid idea, and they should just take her off Kepra completely so she will just have one. Unfortunately, she had already taken 1000 mg of Kepra just before rounds, so she may not have one until tomorrow. If they catch a seizure on the EEG, they will be able to see where they are starting. Then they can do a focused MRI on that area of the brain to see if there is a problem. They were looking at her getting out of here tomorrow, but now it is looking more like Tues. or Wed. I would put up another pic, but nothing much has changed since the last one. Thanks for following our story, I will keep you all updated!
-Branch

EEG Head... or is it EGG Head (maybe both)

Emily is doing a lot better again. She is more with-it, and hasn't had any seizures since yesterday. Actually... the neurologists won't accept that she has had any seizures at all until they see one show up on the EEG (electroencephalogram). So the plan is to keep her head covered in little sensors that monitor her brain activity until Monday or so. We see holes in this plan though. They are keeping Emily on anti-seizure medication (double what she was prescribed last time we left the hospital), but they want to see her have a seizure so they know what is going on... How is she supposed to have one, when meds are working hard to prevent it??? We have asked, but their answer doesn't make sense. Both Emily's mom and I are a little annoyed that they won't accept that she has been having seizures. She is an ER nurse, I have a lot of experience working with epileptics. We have both seen our share of seizure activity. So if they weren't seizures, then what were they?
Emily has this white hat made of bandage to cover the EEG leads, so we decided to make it more fun. Her sister used my sharpie to lighten-up the situation. Emily and I want to thank you all for reading and caring about her.

Round Four

Heres to the longest day I can ever remember. Emily had been feeling a lot better, so we headed down to Wyoming to visit more of our family. On New Years Day, Emily and I took it easy in the morning, and we went to my parents house to watch football and to visit. Emily took about a 3 hour nap, and didn't seem to feel well, so we just took things easy. Later on that night (back at her mom's house) Emily started to experience some different symptoms. She started to have right arm/leg weakness, tingling and numbness. She started having difficulty finding the right word for things, and was confusing names and things. She had ataxic gait (meaning she walked like she was drunk), and she was really upset about everything that is happening to her. Within 15 minutes or so, the numbness resolved, and she was pretty-much back to normal again. We went to bed, but I decided to just keep an eye on her for a while. Just before mpdnight she woke up with intense back pain and headache, and shortly thereafter she had another seizure. We took her to the hospital in Rock Springs (where her mom works) by ambulance. Some time in the ambulance after she left Green River, she started speaking nonsensically. For about 30-45 minutes she would look right at and talk to us, but she was stringing together random words making no sense whatsoever. The look on her face made me think that what she was saying made perfect sense to her, though it was gobbledygook to everyone else. She then had a long seizure, and was thought to have gone back into status epilepticus (constant state of seizure) which is dangerous. She had a CT scan, and was given lots of meds to try to stop the seizures, but she really needed to see a neurologist. There is no neurologist in Rock Springs, so protocol was to get her back to Salt Lake City. She went in an ambulance to the little Rock Springs airport, where she flew by airplane to SLC. She then took another ambulance from the SLC airport to the University of Utah Hospital. Emily's mother and I left Rock Springs as they were about to load her into the ambulance, and we got to the Neuro Critical Care ward as she came in (great timing) She has had more tests (i.e. another spinal tap, a chest X-ray, blood tests, and she is back on another EEG). The doctor just came in to tell me that the preliminary results for the spinal tap show high white blood cell count, and they are still seeing viral meningitis. She either has relapsed, or (more likely) it never was fully delt with. We should have some more results in the morning, and hopefully some answers. For those who don't know, Emily and Himaya will not be coming back with me to Texas next week. They are going to stay here between Utah and Wyoming... we have a lot of family to keep an eye on her and Maya while she continues to recover until she gets her strength back.