Friday, January 24, 2014

01/24/2014 Update

The video EEG showed Eli continued to have seizure activity through the night and early morning hours.  They were able to get them stopped with more phenobarbital.  Because they're confident the medication has stopped his seizures, they discontinued use of the video EEG.  Eli will continue taking Trileptal and his dose has been increased.  That's an antiseizure medicine he started taking on Wednesday.  However, it takes a while to build up enough in his system to do its job, so that's why he's needed the phenobarbital as well.  They'll use the combo of the two for a week or so, check levels of each in his system, then hopefully be able to wean him off the phenobarbital over the next week.

I want to take a minute and make sure you realize how important it is for him to cough.  His lungs sound really good, his chest x-rays have looked good, and his oxygen saturation has stayed at good levels.  However, the longer he lays in bed means an increased chance of pneumonia.  He does have some secretions that he's unable to clear on his own so he is being suctioned a couple times a shift.  Once is deep suctioning and the other times are usually just in his mouth in an attempt to stimulate his cough.  Deep breathing is important for him too, but can you imagine convincing a sedated three year old to deep breathe?  That's why crying is important as well, it gets him to take deep breaths and also often leads to coughing.

Even with the continued seizure activity through the night, we did have some encouragement.  Around 4am we heard him stirring around.  Unfortunately, every time we hear him moving our first thought is "is it a seizure?"  We watched him and he was just fingering the blanket with his right hand.  After a while he started crying out a little which led to some coughing.  We were pretty sure he was hurting since it had been several hours since his last pain meds, but he'd had three doses of antiseizure meds which had left him wiped out for most of the afternoon and night.  As the nurse gathered what she needed for his pain medicine, he was crying and let out part of an "ai-yi-yi" sound.  That's a noise he's been making when he's really upset & crying so it was really good to hear him say part of something familiar to him.  Then while he was crying he said "Mommy."  His respiratory therapist was in the room & heard it too, so it wasn't just me wanting to hear it.  He really said it.  Only once, but he said it. 

As the day went on, he gave us more signs.  He would open his eyes halfway and look around.  I guess he didn't see anything that really impressed him because he'd close them again after a moment or two, but it is something he wasn't doing the day before.  He also initiated coughs on his own several times.  His pupils are usually reactive to light although sometimes a little sluggish.  If we pester him much he'll cry which often leads to more coughing. He's also moving all four extremities.  His right side moves more often and more easily than the left side, but he is moving both. 

Around 5pm he had the most consecutive movements we'd seen at this point.  He had been positioned on his left side with a pillow behind his back.  His neck and shoulders were on a pillow with another between his legs.  He also had his green Elmo blanket over him.  Over the course of about 3-4 minutes he had kicked off the blanket, kicked the pillow away from his legs, shimmied his shoulders off the head pillow, and weaseled himself so he was on his back instead of the left side.  During all this he made several grunting noises, had some cries, and some coughs.  Once he was "settled" he went back to sleep and didn't move for quite a while.  When he did get agitated again, his blood pressure was rising so he received Dilaudid (pain medication) because he hadn't had any for a long time.  After that he received his maintenance dose of phenobarbital so he's been pretty out of it again for a few hours.  However, he needed the rest.  It's really difficult to balance pain control with the other meds that have sedation effects, especially when we're trying to wake him up!

All these are very good signs.  We want to focus on that but we don't want to diminish the fact that we don't really know what's causing the seizures.  As far as we know, they are under control so that's a very good thing.  There are still some serious issues we may be facing.  The way I feel about it right now is that because there's so much we don't know, we can't let ourselves obsess about it.  We'll celebrate the good things and worry when we're given something specific to worry about.  He may have had a stroke.  If he did, there's nothing we can do about it now.  He will have to recover and go through rehab/therapy.  If he didn't have a stroke, he's still going to have to recover from this and probably have some therapy.  His left side is weak, but he's moving it.  Will he ever have full use of it again?  We don't know.  He's not awake, but he opens his eyes and cries.  When will he be awake?  We don't know.  Will he be "Eli" again?  When?  We don't know those either.  Most importantly to us is that he has done some Eli-typical things.  No matter what, he just needs some time.

Another encouraging tidbit is that Eli's phenobarbital level is very high.  Yes, that sounds scary, but think about this:  Even with the high level {remember phenobarbital is a strong sedative in addition to antiseizure medicine} he's done those things he wasn't doing yesterday.  I'm very hopeful that he'll continue to show signs of improvement as the level decreases.

Despite the frigid temperatures, Bryan and I braved the cold tonight and went out to dinner.  It was nice for us to get away, but we were ready to had back to the hospital after we ate.  Even though it's a high stress environment, we're pretty comfortable here.  It really is a home away from home for us.  That probably sounds sad to some of you, but it's reassuring to us.  People here love our son.  We can't go anywhere in this hospital without someone stopping us and asking how Eli is doing!  Nurses, doctors, therapists, dietary aids, child life, transport team, chaplains, supply, housekeeping, etc know Eli.  One day when Dr. Abraham was in our room, housekeeping was working in the room.  As she worked, she was talking to Eli about Pablo (his BFF/lovey), his brother, and his food.  While they were talking, two other workers from other departments walked by and stopped to wave at Eli and say hi.  They asked him a couple questions and went on their way.  Dr. Abraham watched all of it for a minute, looked at me and said "Does everyone know Eli this well?"  I told him yes and he said "That's really nice, but we've got to get you guys out of here because no one should be that recognizable in the hospital!"  It's not what we wanted our son to be famous for, but they do make us feel at home and for that we are grateful.

Thank you all for following along and praying for us.  We've had many messages from people asking what they can do for us.  There are a couple fundraisers in the works and I will soon have information to share with you about them.  I am very excited for what we have coming up.  One is something we were working on prior to all this happening and the timing of it couldn't be better.

Specific Prayer Requests:
- we continue to get positive signs from him
- no more seizures
- pain control
- peace of mind and acceptance of whatever we may be facing

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