Phase I Evaluation: Day 2 Part 2

The rest of the day went pretty smoothly.
Jace is sound asleep right now and went down at his normal bedtime.
Hopefully he sleeps as well as he normally does too.

Poor guy was tortured before bedtime though. They flush his IV twice a day here and just like in the past his IVs start to leak at the site. If it can't be save they have to remove it and start another one elsewhere. Well, after attempting to "save" the IV they ultimately pulled it out and said they would be back to start another one. Wait a minute - this child who is *THIS* close to going to bed for the night is going be woken up for another IV torture fest? I was not looking forward to that. Thankfully, a lady from anesthesia came in to get me to sign consent forms for his MRI and MEG scan tomorrow. She told me they could put him to sleep with gas THEN start an IV. There would be no fighting, no torture, and a much happier baby and mommy. I still do not know why they don't do this to start with. It's one thing if they need the IV for meds but if its JUST to get an MRI or other scan done then why not start it right before the procedure? I guess I will never fully understand hospital's methods.

The way this monitoring unit works is every time Jace has a seizure I have to push a button which sets off an alarm to the nurses station. Usually a nurse or two come running in and someone answers over the speaker on the wall. They ask to have him facing the camera so they can see what he is doing at the moment to go with the EEG info. The nurse said that Dr. Von Allmen mentioned to him that when I push the button the seizure had already happened by that point and what we are mainly seeing is the postictal state (after seizure affects - confusion, fogginess, etc). His seizures are only lasting 10-15 seconds and then he enters that postictal state. We obviously are not really catching the seizures and its the confusion/fog afterwards that clues us into that he had one. What is great about this is that the seizures are not 4 mins long like I have been thinking but the bad is that they are still occurring multiple times a day. I am guessing there are some we are not catching either since not ALL seizures have to end in a postictal state that is so obvious.

It appears that the doctor is happy with the amount of information they have received from the EEG. Now we just need to do the MEG scan and hope that it matches up with the EEG findings. (Magnetoencephalography, or MEG scan, is an imaging technique that identifies brain activity and measures small magnetic fields produced in the brain. The scan is used to produce a magnetic source image to pinpoint the source of seizures. Magnetic fields are detected by extremely sensitive devices called "super conducting detectors and amplifiers," also known as SQUIDs. The scanner, used to detect and amplify magnetic signals produced by the brain, doesn't emit radiation or magnetic fields.)

They will also do his MRI tomorrow - I am guessing this is to make sure there are no new findings since October and also that the Sabril hasn't caused any changes either (a side effect).

The lady from anesthesia said he is "scheduled" for 9:30 am. This can mean anywhere from 7:30 am to 12:30 pm since he can easily get bumped for emergencies and such. That's all fine and dandy but since he has to be sedated he can't eat anything past midnight. Might as well say nothing past 7:30 pm because I am not waking him right before midnight to give him something to eat. If he wakes up before midnight for some reason I will offer him some milk or water since he won't even be allowed that until after the scans.

 I am praying tomorrow goes smoothly for all parties involved - but especially for Jace. Poor guy is just a baby and its unfortunate he really doesn't know any different. I hate that he is almost used to the metal hospital cribs and likes "Topper", the green giraffe they give out to every child that comes to the hospital. I hate that we have so many "Toppers" that I think we can start a collection. I hate that we see some people that work here they remember us. I hate that we have to do this so often. While we are on the topic.....I hate these rooms. This is what our temporary home looks like. Keep in mind we can not leave the room. Jace is hooked up to the wall and can reach the door but no farther. I can leave but only for a second or two to get his milk from the fridge or to refill our water jug. 

I call that the Monkey Cage!

Blankets hung up to help darken the room at night - its still bright even with them up!

 I forgot to mention about yesterday's visitors. First off we had JB's brother, Nathan, stop by. Jace was SO excited to see him! It was hilarious the way he got all excited when he saw his face. Nathan usually visits us when we are here since he works in the area. Its great to have that familiar face around and to have someone that cares right around the corner if you need something.

We are blessed to have supportive family and friends!

Our other visitor yesterday was a chaplain. I did not request a chaplain to come by but what a blessing that he did. It really hit me when I started to tear up and he asked me "Do you give yourself permission to cry when you are overwhelmed?" That made me think. I really don't but I need to - I have the right to have feelings and cry too. Its healthier to let it out anyway. It was great to talk to him and have reassurance that what I am going through as a mother in this situation is "normal" (what IS normal anyway?).

I got to thinking....as much as I HATE all of this and I HATE TSC.....I hate that I may have to let someone do brain surgery on our baby boy.......I know that God has a plan for all of this. If we are going through this in order to be supportive to another family going through this one day and maybe lead someone to Christ through our journey then I open my arms to all of this.

Yestreday, I met a mother, Lindsey, of a 20 month old boy, Peyton. She said he son was 5 months old when he started with his seizures. He caught the Herpes virus that causes cold sores (not the STD) and it traveled to his brain. From there it caused encephalitis resulting in seizures and major delays. She had him at the hospital in Dallas where they told her that even though the seizures are focal they can't call him a surgical candidate. That is when she decided to get a second opinion with better tests here in Houston. We welcome her here and I hope she gets MUCH better care here for her baby boy than she did in Dallas.

Its so mind boggling how you can easily have the healthiest of children and in a blink of an eye their worlds are turned upside down. I do not blame any mother for being overly cautious with germs and people touching their kids. As rare as it is for a virus to travel to the brain - it is still scary and CAN happen.

Earlier I put in Jace's Baby Praise DVD since the ONLY thing on was Sponge Bob (HATE that cartoon!)

I am glad JB reminded me to grab a few DVDs because I would have gone insane if Sponge Bob had to be on. As soon as I got the DVD in and it started Jace was glued! I am not sure if its the voice, the pictures or what but he loves that DVD. I don't mind because I love the songs myself and could watch/listen to it over and over again.