Can I get a little sedation please?
October 9, 2008 | Updates
Well, two more days gone by and I finally got a call from the neurologist today. Of course, no one calls me for 2 days despite numerous phone calls to them and then today, both neurologists I’d been trying to reach called me back. They both gave me game plans for switching to depakote. Funny thing was, their game plans were totally different. In the end, we took Samuel to have some blood drawn to ensure his liver is functioning well before we go trying this new med since it can cause liver failure. Apparently, the risks are 1 in 10,000 if you are under the age of 2 and zero if you are over the age of 10. So, Samuel’s chances of this medication affecting his liver are somewhere inbetween those two. At this point, though, he is so unhappy, that I don’t see another option.
I reduced his Keppra to 2 1/2 mL’s twice a day a few days ago. Today, I reduced it to 1 1/2 mL’s twice a day. This is the dose he was on before this whole mess began. Tomorrow, we will start him on some form of Depakote if his blood draws come back good. Poor kid, though. Tonight I gave him a bath and he soaked us both. I’m thinking from now on I’ll wear my robe over my clothes while I bath him and then I can just hang it to dry when we’re done instead of walking around with one side of my body soaked for a few hours :). After the bath, I gave him clonidine, melatonin and ambien. I hate giving him a lot of medication, but he hasn’t slept for 3 nights now and I can’t live with him crying all the time AND no sleep. He fell asleep a bit ago and then I took the time to bandage up his little hands.
Both his hands and his feet have been rubbed raw by him constantly rubbing them against the sides of his crib or the floor or me or whatever else is near him. He doesn’t do it on purpose. He has just been writhing around constantly for 9 days now. He’s also got a cut above his little eye that I don’t know how he got. And his little arms are bruised from the blood draws today. His little lips have been really dry, too, from breathing through his mouth as he cries most the day.
You know, the next time someone asks me if I can just live with his irritability for a week or so to see if it subsides, they may be sorry they asked. The last 9 days have been awful - for both of us. Maybe I’ll tell them we’d be happy to do it as long as they sedate us BOTH :)! Otherwise, I don’t think I’m going to be game.
I’ll leave you with a few pictures of all the little bandaids on his hands in an attempt to keep him from rubbing them completely raw. His feet aren’t as bad, but are headed that way. And a picture of the bruises from his blood draw. Not sure why I even let the guy doing the blood draw even try. He was obviously a greenie. And Samuel is about the hardest person to stick. I have got to learn to “just say NO!” Ah, poor guy!
In better news, I gained another niece today! She weighed in at 9 lbs 13 oz. Crazy! That’s almost twice what little Nathan weighed when he was born. But he’s done A LOT of eating since then to catch up in size. I’m a little jealous of her birthday. I mean who can forget 10/9/08? Anyway, she looks really cute!
Well, I have to go. I can hear Samuel awake and upset in his bed! Honestly, all that medicine and he only slept an hour. Calgon!!! I would take a nice long bath with lots of bubbles, a little chocolate and ear plugs right now. Doesn’t seem like much until you realize that a few moments of peace has not been on the menu for 3 weeks now and it’s not about to end soon.
Ok, I’ll stop complaining now. Thanks for listening. And thanks for all the prayers. Keep them coming.
Love,
The Jewkes
Update on the Update - Samuel wasn’t just awake when I went to his room. He was awake and had somehow moved around in his bed in just a few minutes so as to unhook his feeding tube from his extention tube. In easier terms, his bed was covered in all the contents of his stomach which had leaked out his tube. So, a new bath, new sheets, new clothes, a load of wash and we’re back in business. I even held back the tears. And it’s already after midnight, so the good news is, he probably won’t be up more than 2 more hours. Ugh, I think I’ll go bury myself in a large bowl of ice cream :(! Let’s pray for better news from me soon, ok? Thank you :). Until then…
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October 10th, 2008 at 8:46 am, Caradie & Corbin Says:
I wish I could come help you, Corbin’s issues seem like nothen compared to what poor Samuel is going through.
Caradie & Corbin
October 14th, 2008 at 5:34 pm, Cindy Says:
Hi, I have been reading your blog for quite a while now. I thought I would post a comment to your post. I am praying for Samuel. I pray his little hands heal and I pray that you can have some peace in your daily routine. Please post again soon!
Cindy in California.
October 14th, 2008 at 10:34 pm, La Donna Says:
He sleeps as sweetly as an angel. The pics are beautiful - despite the bandages/blood draws, he is lovely.
I know this sounds strange - but sleeping problems ABOUND in my home. We have recently been recommended to try lavender linen spray and - as crazy as it sounds - it has been GREAT! I got a bottle for six bucks at Bed Bath & Beyond. We spritz our pillows before going to bed & I have also started spritzing the kids. I used to rub lavender lotion on them before bedtime and don’t remember ANY results like this. Crazy, but true.
Doesn’t address at all what you are dealing with, but every new and crazy idea is one step closer to the right solution.
LD
October 17th, 2008 at 10:31 am, Darlene Says:
Teresa,
Sending out lots of warm hugs and many prayers to you and your sweet boy. I wish I lived closer to help you out.
much love,
Darlene
October 18th, 2008 at 12:25 pm, Natalie Says:
Man, ya gotta love when the g-tube comes open. Good times. I am so sorry to hear things haven’t been going so smooth lately. I wish I was there to bring ya a big Dairy Queen Blizzard and sit with Samuel so you could rest! So I’ll do the next best thing–I’ll pray for ya!
Love ya,
Nat