Friday, July 3, 2009

Why Is This Happening?

Wednesday
Wednesday was a really horrible day. Lila started off the morning with a seizure. This seizure was different than Friday's seizure activity. She was catatonic, unresponsive to her name/ my voice, and her limbs were limp like a rag-doll. It lasted about 45 seconds. I called the pediatrician to tell her about the new seizure. I told her that Lila didn't lose any oxygen and she remained conscious after her seizure. She asked me to go get labs drawn on Lila to see what her Phenobarbital level was--in the event that they needed to tweak her dosage. After we had the labs drawn, Lila had another catatonic type seizure. This one was brief and lasted only 15 seconds. We went home and Lila had two more seizures. I called the pediatrician again and she told me to go to the UCLA Emergency Room and demand to be admitted. She didn't want us going to Cedars again to see the horrible neurologist that they have on staff. When we arrived at the Emergency Room at UCLA Lila had another seizure in front of the nursing staff. They observed the seizure, took her vitals, made sure she wasn't losing any oxygen and then told us to go to the waiting room. We waited for 3 1/2 hours to be seen by a doctor. Lila had a series of several more seizures in front of the doctors. Hey, at least she has good timing. After 9 1/2 hours in the ER and a measly 12 seizures later they sent us home. They told us that because she wasn't losing oxygen, her demeanor immediately following the seizure's was normal, and the fact that we had an appointment with a neurologist in the morning-we were in pretty good shape to go home. The highlight of our ER visit was the deranged fellow in the room next to us. Here's a re-cap of his conversation with the ER Nurse

Nurse: Sir, why are you here?
Deranged Fellow: I crushed up a CD and swallowed it.
Nurse: What!?! That's crazy!
Deranged Fellow: Mumbles something
Nurse: You also ate two toothbrushes! Uh, why do you have an IV in your arm?
Deranged Fellow: They discharged me with it from the other hospital.
Nurse: Right.

Thursday
Thursday morning we went to meet with our new Pediatric Neurologist. She is terrific. She assessed Lila to be developmentally on track and with her age group. She is weaning Lila off of the Phenobarbital and is putting her on a new anti-seizure med called Keppra. She said that it may take a little tweaking to find the appropriate dosage to control the seizure activity. The Neurologist is starting Lila off on a very low dosage. Hopefully it works. She also said that she believes that Lila's seizure's can be controlled with medication and Lila will eventually outgrow the seizure's without any developmental delays. I hope and pray that is true. She re-scheduled us for an EEG for this Tuesday. Yay! She is hoping to get us an MRI soon too. Lila rounded out the day with five brief seizures. Not so terrific.

Friday
Today was an ordinary seizure filled day. Nine seizures. All brief. Each time Lila returned to her normal self. The only thing to be noted about today was that Lila is more tired than usual which is most likely because of her meds.

I think that this past week has finally caught up to us. We want answers. We want the seizure's to stop or at the very least be under control. We're tired of watching our beautiful little girl go through this. We had the whole "Why Us" conversation with a rundown on what a difficult journey we have already been through to have Lila. It sucks. I wouldn't wish this on anyone. We're coping as best we can with this hand that has been dealt (more like bitch-slapped) to us.

12 comments:

Kerrie and Mark said...

I am so sorry to hear what you are all going thru and poor little Lila. Why is this happening...can you not get an answer? It must be so scary and so frustrating. I am praying that the meds work. I can only imagine you are on super high alert at all times now and this must be so overwhelming. The MRI cannot come soon enough.
Kerrie

Amani said...

I am terrified for you and Lila. Can you not put her into hospital until they find an answer?

I trust you are doing all you can as new parents, but really, this is a time for you all to be rejoicing and being happy and being togther. I am so sorry you have to face this awful situation.

Sending love and prayers across the miles.

xxx

Carrie Jo said...

I was hoping so much that when you had a new post, this would be gooc news.

My mother had childhood epilepsy back in the 60's and she is healthy and normal today. Keep in focus that Lila is going to be all right. This is terrible, and no parent should ever have to go through this, but it sounds like you have wonderful doctors who know what they are doing.

Praying for you and will continue to.

jojo said...

i stand by my last comment - we live in an age where medicine works miracles. this is a horrible thing for all of you to be going through, but i feel very confident that you will all be ok.

yes, it is unexpected and not ideal, and certainly not something you thought you'd have to deal with after fighting so hard for you little one, but this is your life. and it sounds to me that you are the best mom lila could ever wish for.

you are so strong. i wish you love and hope and deep sleep when you need it so you can fight for your little girl when she needs you.

lila will be ok and so will you. it's just a crap thing to be going through right now.

i'm so sorry...but you are very strong and you will get through this.

xxx

Rhonda and Gerry W said...

So, so, so sorry to hear about all of this. I can't even imagine what you must be going through. Seizures are very scary to witness and on your newborn is unimaginable. I am with Jojo, it sound positive that Lila will outgrow these and your neuro Doc sounds terrific.

Just sucks you have to go through this experience. Sending good thoughts your way.

Johnny and Darren said...

Guys, this is sad news & not something as new parents one wants to go through. Like others have said I'm sure your docs are doing all they can for little Lila.

You're all in our prayers.

N said...

I'm really sorry you are going through this right now. It is so unfair after such a long journey. I hope so much you get answers soon.

Daria said...

I am sorry to hear this is still going on. I hope they find the reason real soon. You and your family will be in our prayers!

crystal said...

I hope that they can find out what is wrong with Lila, so that the seizures can stop. You are certainly in my thoughts!

Crystal

Mandy said...

It really saddens my heart to hear what you guys are going through. You guys are such strong wonderful parents and i hope for the best with Lila.

She must be so tired and you guys as well. I hope you have the answers you guys are looking for hun. Keeping you in our prayers.

Sandra said...

I am so sorry to hear about Lila -- nothing is more frightening than seeing your child in distress and feeling powerless to help her. Stay strong and continue to enjoy the amazing and beautiful baby that Lila is as much as possible. We are thinking of you.

HammockGuy66 said...

I decided to visit this blog a few days ago and was shocked to read about what Lila is enduring. I would hope that you have received some answers by now. You all are in my thoughts and I wish nothing but the best.