Well I woke up this morning feeling 100% drained. Jude had another seizure so they gave him more Klonnopin and he went to sleep. So I crawled back on to our lovely purple bed we have here and I fell asleep so hard that when I woke up an hour later it felt like six hours later. This morning the case manager came in and we received education in seizure emergencies. We also discussed his medicine therapy, and then Mike and I asked a lot of questions. My understanding is the more therapy we get him in the better chances he has. We can also work with him at home with pictures, colors, and toys. I would like to get him enrolled in the Gymboree play therapy because all the bright colors should be great for him. One good thing is when they gave him his phenabarb this morning he took it nicely. We did not have the incident this morning we had last night where I had to leave the room in hysterics. Jude also stayed awake for awhile after they gave him the meds and he played with me. Mike turned on his "Hey Jude" song and Jude got very quiet and looked towards the source of the song......he knows. He smiled at me, and coo'd in response to me talking to him. So we haven't lost the smile we love so much! We are more accepting that this isn't our fault, and just happens sometimes. We just love him very much! Sarah at my work was just so nice yesterday and said if I try to come back to work Wed she is locking the door and not letting me in..ha. My boss also called me yesterday and was SO nice. I feel like the poor guy has been through heck and back too because of all my medical emergencies. He said he was so incredibly sorry and just didn't have words. He told me to take my time and keep him update. I would love to be at home with Jude, but the realistic side is I have to bring in money and I am the one that holds our health insurance. So luckily Mike is at home right now for awhile, and we hope we can get his company off the ground so he can stay there. I will update you guys once Dr Roberts come in. Right now Jude is asleep on our purple bed with Mike playing more music to him. It's pretty cute.
Also we have tracked Jude's seizures and they seem to be pretty isolated to when he wakes up or eats. We make sure we time them each time because anything over 5 mins can be damaging. Problem is all his are over 5 mins so we are praying the phenobarb works. Sometimes it takes several tries to get the meds right, but we are going to believe this will work.
6 comments:
I'm sorry but whoever told you that any clusters of spasms over 5 min are damaging to the brain, they obviously know NOTHING about Infantile Spasms. ALL clusters of spasms last over 5 minutes. It's just a fact. That whole thing about seizures lasting over 5 min being harmful, only applies when it's ONE seizure lasting that long (and they are holding their breath causing oxygen deprivation to the brain). The clusters are actually multiple seizures, so it really can't be compared at all. Also, Infantile Spasms are commonly known to occur after waking. Sometimes it's 5min and sometimes it's 30-45min after waking. Many times this coincides with eating. Also...once you go home (they may have asked you to do so in the hospital for their records), don't think you have to count every seizure, every moment. It's just not realistic...and it's mentally exhausting.
Please read this post from another IS Mommy that dealt with the issues of needed to keep her job despite her daughter's diagnosis. http://jenellesjourney.blogspot.com/2008/10/mommy-wars-have-entered-politics.html
Thanks for the info on the seizures that helps. I get so much mixed information!!!! I think this whole thing is mentally exhausting. I feel like I could sleep for a week.
Once again - you are in our prayers!! Jennifer
I am so sorry to hear about this. I am in tears reading about what you are going through, and my heart breaks for you. My little one has been in one of those cages I like to call them at Cooks. Thank you for taking the time to tell everyone about his story! I will keep reading and hoping for positive thoughts!!!
I've been following your blog for months and I'm so sorry what you are going through. My prayers are with you...you and Mike are so strong. Keep the faith....Jude was given to you for a reason.
Jennifer,
My heart just breaks for you and Mike. I can't even begin to imagine what you are going through. I will keep you in my prayers. It sounds like you have a strong faith which makes all of the difference in the world. I'll be thinking about you and your family. Michelle L.
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