A very long day with the docs

Today was a very long day at PCMC.  Mikayla had an EMG which is a needle test that gauges her nerves and muscles.  She was a trooper! They didn't have to sedate her and then she just looked at her book and didn't make a sound as they were sticking electrodes and needles into her muscles-A-MAZE-ING!  The doctor was able to get a little more information and they have scheduled a muscle biopsy for  a couple of weeks from now.  We have hope that his new neuro-muscular specialist will be able to give us answers where so many have failed before, although we mostly want to make sure that there isn't anything degenerating going on.
Carter had his follow up with his neurologist who tweaked his medication and is still hopeful that we can control the seizures with medication.  It was working so nicely for almost a week there! (dang that stomach flu that set us back 2 weeks!)  He's still having several little seizures/drop attacks an hour and they get worse when he's tired but he loves wearing his helmet which helps set mom's mind at ease and mostly we just bribe him to stay on the couch and watch tv so he doesn't get hurt...  The doctor has a few ideas for a diagnosis but its too early to tell and I don't want to name them and have you all google them and get scared so you'll just have to wait to find out.  
For now know that we love you and appreciate your concern.

A slight setback

Carter had a slight set back this week.  On Wednesday he woke up and started throwing up and kept throwing up throughout the day.  Probably just a flu bug, but when you can't keep anything down that means you can't keep meds down either, which in Carter's case meant a return of the seizures.  He had been doing so well and and back to his happy, smiley, cheerful self since we got home form the hospital.  Long story short, we ended up in the ER all night getting him rehydrated and administering his meds through an IV.  This worked really well and calmed everything down, however he has had a bad reaction to one of the IV meds they gave him, dilantin, which has left his incredibly weak and floppy--its like having a 34 lb infant!  Its been really frustrating for him to not be able to hold his head up or feed himself, not to mention walking around and playing. So we're staying pretty close to home these days and hoping the dilantin will leave his system with no trace, fingers crossed.
Thanks for your continued love and support!

We finally got home last night!  Best Valentine's day ever!  You can have your romantic movies and elegant restaurants, we just wanted our family under one roof again.
We got news around noon that Carter was stable and there wasn't anything he needed done that couldn't be done at home so we opted not to stay another night and come home.  We still don't have an explainating for what is going on or its cause, and his wake-time brainwaves are still a concern.  But he hadn't had a clinical seizure in 24 hours and he was responding favorably to the medication.  Since he had been monitored the entire time they have PLENTY of EEG to review.  After fitting him with a seizure helmet and sending us home with half of the pharmacy we were finally able to step out in the fresh air, for Carter the first time he left that room in 8 days!

I can't say thank you enough to all of our wonderful family and friends for everything you have done and the prayers that you continue to send.  Its going to be a long road but it is comforting to know we won't have to walk it alone.

Cautious Optimism

Happy Valentine's day!  First let me say I have the best valentine in the world!  Everyone thinks they have the best spouse but I think recent events prove definitively that I'm the winner in that category.  So I wish we were together today but with you, every day is Valentine's day!  Love you SOOOOOOOOO much!
Now, onto the news about Carter.  He has now had 3 nights of normal sleep activity (yay!) but his wake-time brainwaves still don't make any sense.  Still, we've made great strides.  He has had little to no seizure activity since his grand mal yesterday and last night he started talking again.  He is once again bright eyed, although still very tired and a little spacey.  Since things don't seem as critical today his doctors are spending more time trying to find a source of the problem so he has a lot of labs ahead of him today, but hopefully the blood-draw will be the most traumatic event of the day.
There is a chance we will be going home, but we've heard that before.  So for now we are practicing cautious optimism.  We'll keep you updated as the day progresses.  Thanks for your continued prayers!

Roller Coaster Ride

The last 24 hours or so have been a roller coaster ride.  Carter had a hard day on Tuesday, feeling not great and quite out of it most of the time.  Made for a very whiny kind of day.  The good side was that Daddy came up and stayed with him while Mommy went home for the first time and took a bath and slept in her own bed and played with sisters.  Daddy had a little bit rougher of a night, with a boy who didn't feel well, threw up his medicine and refused to take more.  And then this morning upon waking decided to scare everyone with his first grand mal seizure in nearly a month.  Poor boys!  I guess they really needed mom back.  Because since I came back this afternoon he hasn't had a single seizure!(disclaimer: we think, sometimes we can't see them)  And the neurologist told us that his sleeping EEG was once again normal so we're calling today a victory.  Trending towards normal is good.  The other good news?  He said "cracker" tonight!  It sounds strange, but since I haven't heard an actual word in more than 48 hrs we found it pretty exciting.  Here's to hoping things keep trending up!
And for those of you wondering, there is a slim chance we could come home late tomorrow night (maybe 10%) but most likely it will still be Friday or Saturday, assuming no more setbacks.

Finally some good news!

Carter woke up this morning doing much better!  YAY!!!!! This new medication will take a while to take full effect, but so far, so good.  It seems that the predisone is bringing down the inflammation in his brain and giving him some relief. As this condition is always changing on us we still have to be continually monitoring, and he is still having seizures but they were not nearly constant upon waking as they have been so this is a huge improvement.  If he continues to do well Christopher and I will get to switch places today and spend time with the other kids (ie I'll head home and he'll come stay the night here), although one of these days ideally we would like to spend some time with each other (really hoping we are home for Valentine's day!)!  Thanks for the prayers, concern and help.  I don't want to jinx anything but trying to be positive--hopefully we are on our way to recovery.  Have a great day!

Meetings, Meetings, and more Meetings...

Today wasn't as great as we were hoping, as evidenced by the fact that we are still in the hospital.  And after a minor meltdown on my part, we finally have a new plan.
Carter's EEG is showing a lot of seizure activity which in and of itself is worrisome, but the other problem we are having is that between seizures his brain activity is still abnormal.  We hope that the same medication that will control his seizures will control the other brain activity but we aren't sure...and we have to control the seizures first!  So here we wait, watching out boy and trying new medications.  The last 12 hours he's been REALLY out of it, only having brief moments of lucidity.  Thankfully that medication is wearing off and hopefully after a good night's sleep (and the new medication we'll start tonight) he will be a little more awake and vibrant tomorrow.
But we spent the day talking with lots of doctors about all of our options.  Since he doesn't fit in any box, and he isn't responding to "standard" protocols we are having to think outside the box and come up with solutions on our own.  Where's Dr. House when you need him?
But after meeting with pediatricians, hospital neurologists, radiologists, clinical neurologists, and pharmacists we have something new to try and hope to at least get a clue what direction to go in. It means we will be here at least 3 more days, but we hope and pray to be home for Valentine's day.  Keep us in your prayers and thanks for the love, concern and service we have received.  We are so indebted we could never repay you all.  Thanks!

Sunday's Wild Ride

We had great hopes this morning that things would have normalized and we would be on our way home by dinner time.  However, Carter had another bout of constant brain-wide seizure activity this morning and so we were set back a day.  We have started some new medication that hopefully, in tandem with his current prescription, keep out boy's brain quiet so that we can get some sleep tonight and be home for lunch tomorrow, fingers crossed.  I'll let you know how it goes in the morning.
And a quick thank you to all the wonderful ward members who helped Christopher in nursery today.  You are a God-send and a great big reason why we are grateful to live exactly where we do.

Update- Saturday morning

Last night Carter got a visit from Dad and sisters!  How exciting! It was short because children aren't allowed here during cold and flu season, but it seemed to regenerate his spirit and it was great to hug my girls!   Makes you realize how important it is for your family to be TOGETHER, something I think we take for granted so often.
Unfortunately, Carter had a rough morning, having as many as 15 seizures in 1 hour!  The EEG results are telling us that his neurons are firing all over the brain and constantly.  What this means is that we need to stop all the activity so that we can continue to treat.  So he got some medication to quiet his brain and hopefully help us to determine where all of this activity is originating so that we can learn how to stop it at the source.  We are increasing his medication today and hopeful that if it works we won't have to add a secondary medication.  Fingers crossed for an uneventful afternoon...we won't know more until tomorrow afternoon more than likely as changes can take 24 hours to take effect.  Keep the prayers coming and we love you all!

Carter's Adventures at PCMC

Just before christmas Carter decided to liven up life around here by developing seizures.  They started out short and separated by longer intervals, however that got too predictable for out little guy so he has decided to have many different types of seizures at many different times.  It became necessary this week for us to be admitted to Primary Children's Medical Center (PCMC) in SLC for continuous monitoring to give the doctor's a chance to try and get these episodes under control.  While seizures are not fun for anyone, the only medical problems that have arisen from them have been a couple of bumps on the head.  Nevertheless we feel it is important to be at the hospital to give Carter the best chance of overcoming this little setback so he can continue with his boistrous life! While we are here he is being continuously monitored and his medication is being tweaked.  

So far being at PCMC has been wonderful!!!  Its almost like being on a cruise!  Seriously!  They have an activity cart that brings art and crafts around (hence the painting he did), room service anytime with anything you want, as much as you want, for FREE (for the patient only, of course), playrooms and movies for free and even and XBOX 360 in every room.  Plus there are volunteers that do everything from music therapy to bringing a dog around to play and do tricks with your kid.  Its AWESOME!  We are so lucky to have such a great children't hospital only an hour away!
And speaking of things to be grateful for, we are so grateful to you, our family and friends, for the love and support and offers of help, not to mention all the care packages and balloons.  We are truly humbled by how many people have reached out to us in the last 24 hours and want to help out family during this "inconvenient" time.  We love you all and are forever indebted to you.  Thank you also for your prayers on our behalf as we feel the comfort of the Spirit with us continuously.  Thank you!
P.S. And for those of you wondering, we will be here at least through Sunday, possibly into next week.  It just depends on how he reacts to the medications.  Christopher is fortunate to be able to work from home and he'll spend Saturday with his parents and us here at PCMC.  We'll just have to see what Monday brings for us.