Isaiah has surgery on 1/23

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Isaiah has surgery on 1/23

Isaiah has been having a lot of trouble with his symptoms. His neurologist feels it's time for a Deep Brain Stimulator. He is scheduled for 1/23, which is less than 2 weeks away. I'm very nervous about this, as it is brain surgery. I really hope it does the trick.

He is out of school right now. His doctor wants him to stay home until his surgery because he is so unstable. He will be getting homebound instruction.

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you and your family are in my t& p. I can not imagine the stress you must be feeling!! ((HUGS))

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Oh my gosh Deb, I am so sorry you are going through this! You family will be in my thoughts- please KUP!

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You are in my thoughts and prayers. I hope and pray all goes well.

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Thanks everyone. We figured out why he is so unstable all of the sudden. He has an ear infection on the right, starting on the left, a likely sinus infection, and a possible dental infection. He started antibiotics last night and is already doing a little bit better.

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I'm so glad you can make things easier for him!
Best wishes.

Lots-o-Tots's picture
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Thinking of you. I don't know the back story . . . can you fill me in?

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Good luck with his surgery--I'll be thinking of you. I'm sure it is nerve-wracking to have a child go through surgery. My ds had a simple eye muscle surgery at 4 yo and I was a mess!!

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Poor kid to have so much going on! Hope the antibiotics help. KUP!

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Oh hun, what a stressful time for you all. (((((HUGS))))) Healing thoughts and prayers are winging their way to you all, and here's hoping the antibiotics kick in quickly and that the surgery goes better than expected!

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My thoughts and prayers are with you and your family. I would be a nervous wreck!

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Thanks. The antibiotics are helping, and he has slept through the night 3 of the last 4 nights, which is better than he has slept in months. I'm trying not to think about the surgery, because I need to be able to function as a mom right now. I can't believe it's barely a week away.

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Sending T&P your way! I hope everything goes well!

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How is everything going?

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"Lots-o-Tots" wrote:

Thinking of you. I don't know the back story . . . can you fill me in?

Sorry, I missed responding to this earlier. Isaiah has a neurological condition called dopa-responsive dystonia. Kids that have it often move like kids with cerebral palsy, but chemically, they are closer to Parkinson's patients. Back in December of 2010, the pharmacy gave him the wrong medications, and it sent his disorder into hyper-drive. Ever since then, he's been needing more and more medication to keep his movement under control, causing him to be on well over the recommended maximum dose for a child his age and size. This is why he needed the DBS.

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-XP- Surgery went very smoothly. We have had a few bumps along the way. For instance, he pulled out his catheter and hurt himself, so every time he pees now, it's a painful ordeal. And he's having trouble swallowing, so we had him on tube feeds, but he threw up, so now he's back on IV fluids. The good news in all this is that they turned on his unit, and he's actually doing well. He hasn't needed an extra dose of medicine all day, even though before we went into the hospital he was getting 4-5 extra doses per day. If he continues on this trajectory, we will be doing very, very well. We won't be able to go home, though, until he is able to tolerate feeding and is able to pee without needing morphine.

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Thank you for updating us Deb!! I am glad to hear that the surgery has worked!!! That's wonderful! Poor sweetie , he has to use morphine to pee- that sounds so painful!! Hopefully the site heals fast for him.

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I know. But, that sort of injury supposedly heals fast. We've moved him off of morphine onto percocet, and I hope to have him off that by tomorrow. He's not in as much pain now. If we can get him to keep down some food, we should be able to bring him home (maybe tomorrow).

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Im soo happy for you!! I am so glad that surgery went well and the extra medication looks to be able to be stopped!! Im sorry about the other trouble along the way...but it sounds like his injury is healing....I really hope he will be able to eat for you soon and you can get home!!! Thanks for the update!! Ill keep you in my t&p until you are home and this ordeal is behind you!!!!

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I am glad the surgery went well and I hope the recovery goes smooth. Your a strong mom! Sending prayers and thoughts!

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Hi all. Since the last time I posted, we only used the Percocet once and switched to Motrin. He only needs that once or twice a day. His peeing issue resolved pretty quickly. He was very constipated, though, but we resolved that over a couple of days. He got to go home on Friday. He's still not eating well, but we have a g-tube, so we are doing supplemental feedings. He had a few bites of oatmeal today. I'm hoping we can get him to eat a bit of lunch. He's back to needing some of his extra meds, but I attribute that to stress, constipation, healing from surgery, and not sleeping. He did sleep well last night, and if we can get a couple more good nights of sleep, he should be feeling a lot better. The down side is that he is peeing the bed 1-2 times a night because we increased his nighttime feeds. I hope he adjusts quickly.

The other great news (I forgot to mention) is that we were able to get rechargeable batteries, which means it will be 9 years before he needs surgery to replace the batteries!!!