Friday, July 13, 2012

Home Alone



They sent us home today.  Like I mentioned before, I don't know that I'm ready to be home, but here we are.  We're getting on with life.  It will be a whole new life, for awhile at least.  For instance, Levi had four seizures today.  My job, as stay-at-home-mom is to make sure none of those seizures last more than five minutes and that he doesn't have more than two in an hour, otherwise I have to administer emergency medication and call his doctors.  So, I pretty much have to watch him every moment of the day until we've found a treatment that manages the seizures.  And that is the next step - finding a successful treatment.

And the current treatment plan is:

We were sent home with five prescriptions!  We have already begun weaning him off of one, which will be finished tomorrow.  Another is the emergency medication that I mentioned previously, so we'll only use it if we absolutely have to.  But, that still leaves three that he has to take on a daily basis - the vitamin B6 - twice daily, prednisolone (a strong steroid) - 4 times/day, and Zantac once/day (because the steroid will upset his stomach).  So, they are hoping (WE are hoping) that the steroid will help to calm/stop the seizures.  We have a follow-up appointment in two weeks to determine whether the steroids are helping.  This will include another EEG (with all the wires connected to his head).  Depending on EEG results and whether the seizures have increased, stayed the same, or decreased they will either increase the steroid dosage, keep it the same, or begin to gradually decrease it.  We'll have another similar appointment 2 to 4 weeks after the initial follow-up appointment. The hope is that we can gradually taper Levi off of the steroids completely and stop the seizures altogether.  At the very least, though, we'd like to get them under control and potentially put him on a milder medication to manage them.

There will be more test results coming in a few weeks as well which could change the treatment plan if any of them come back revealing a specific cause for the seizures.

So, there you go.  This is the plan as I understand it. (Speaking of "as I understand it", I would like to throw a disclaimer out there.  All of the information/conclusions. in this and previous posts, from the doctors is "as I understand it".  Seizures are such a complicated condition that even the neurologists don't claim to completely understand them and then I'm expected to understand the neurologists as they try to explain something that they don't completely understand.  With that, I'm sure I have plenty of misconstrued information about seizures, etc...., but it's what I understand is going on at this point.)

Thanks again for the calls and texts and prayers!!  Even just seeing the huge numbers of people reading this everyday is amazing and so encouraging!  We have a HUGE support group.  Thank you!

6 comments:

  1. We love you guys, Keira! We will continue to pray for you. Love, The Parsons

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    1. Thanks Sarah! It has been amazing to have so many people praying for us! We have had so much grace and we know that the prayers are a huge factor.

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  2. We're praying for you guys! We love you and believe Jesus will bring healing!

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  3. Thanks Gabe!! Love you too!

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  4. So glad you got to come home...even if you don't feel 100% ready. I'm sure Levi is enjoying home more than the hospital. We will, of course, continue to pray. Yesterday, Ethan said, "How's is Keira's baby doing?" I said, "Well, the doctors said Levi could go home. Now we just have to wait and keep praying that the seizures stop." He was satisfied with that answer but Audrey piped up and said, "I thought Keira's baby was named Toby." Ethan and I looked at each other and he said, "That's the other one." I was cracking up.
    Love you and miss you.

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  5. Haha! Those kiddos! I love it! Well, thanks for praying friend. And, I miss you too. So much! Love you!

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