The Calm Before the Storm

That should've been the title of my previous post.  Thank God we got to enjoy ourselves for a few days because the storm has definitely arrived.  We got to Cleveland on Monday and had our first appointment on Tuesday that went pretty smoothly.  Tuesday night the craziness started when Mila started to get sick throwing up and awake all night.  She couldn't keep anything down including her medicines for the first time ever.  Not easy caring for a sick kid in a hotel room.

We had to cancel our first appointment on Wednesday for the eye doctor and needed to make some calls to see if we should still keep our appointment with the neurologist in the afternoon.  We we're also scheduled to be admitted to the hospital and begin the EEG testing.

We did keep the neurologist appointment with Dr. Gupta and had a pretty good meeting with him.  Marcela and I have a pretty good understanding on what we're facing and he had some questions for us and kind of gave a game plan on the next few days.  He decided  we should still admit Mila to get her some fluids and medicines through iv if needed.

Hooking up the EEG is always a disaster with Mila.  She is terrified.  We knew going in this was not going to be good.  She has had this done five or six times and this was probably the worst.  On top of being sick, having no sleep and being hungry she had to do this.  She was screaming, crying, begging for it to stop the whole time in fear and terror.  It's the worst thing to watch your kid go through.  You can't calm her down, you can't explain why we have to do it, you just have to hold her down and watch.  I don't wish this situation on my worst enemy.

After about an hour to finish hooking her up, which I believe took way too long, she finally started to calm down and began to fall asleep.... And then she went into a seizure.  It was only a matter of time.  It happened at our last EEG.  She gets so extremely worked up that it sends her into a seizure.  This one lasted about four minutes.  I find it ironic that she rarely has seizures but she has them in the hospital.  The weird blessing in this is that they captured it on the test.  So they can locate where in the brain it came from.

I stayed one more night at the hotel and Marcela stayed with Mila.  I went back in the morning and I hear it was a horrible night.  Mila's now got a bad case of the runs (sorry honey when you get older and read this).  So the worry now is dehydration on top of everything else.  They tried to get an iv hooked up in the afternoon but failed.  This is normal.  They can never get one on Mila.  At least they said they would only try once.  We've seen her poked in both hands and feet and not get it.  Poor thing had little scars before she was three months old.

So now it's up to us to keep her hydrated, rested and getting healthy.  Not easy.  A hospital is no place to rest.  When one nurse, doctor, social worker, food server, janitor leaves the room, another walks in.  Thats how it goes.  Eventually you get tired of it.  So you need to get one of these.

We met with the epileptololgist Dr. Wyllie and had another good conversation with her.  Getting any questions answered and keeping us informed of the schedule and game plan.

Friday started out a little better.  The girls got some sleep Thursday night and I checked into the Ronald McDonald house and stayed there.  Mila seemed to be getting back to her usual self.  She had some art and music therapy come by to entertain her and she loved it.

Then it started to go back down hill.  Nap time getting constantly interrupted, Marcela starting to not feel well and Mila getting sick again.  Tired, sick people need rest and it's just not happening here. 

They want to keep us in here and on the EEG until Monday.  We have a rescheduled eye appointment that day.  Tuesday is the doctors and surgeon's main conference to discuss Mila and we meet with the neurosurgeon, Dr. Bingamin.  If they recommend surgery, it is scheduled for next Thursday.  They've made it known that it is only a tentative date.  If we aren't ready, if Mila is not healthy enough, if we need more time to come to terms with it, they will work with us.  Especially since we are coming from so far away,

So it's Friday night, I just had some coffee to prepare me for however the night goes.  I'll be staying with the girls tonight.  Should be good times.