Surgery date set for January 23

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Joined: 12/01/05
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Surgery date set for January 23

Isaiah is scheduled to get his Deep Brain Stimulator on January 23. He will have the surgery at another hospital and then transfer to Children's to recover. (They will transfer him asleep and recover him in the PICU due to previous complications from surgery.) I'm very nervous about this as it less than 3 weeks away. But he is struggling so much now, it's beyond time.

Joined: 05/05/04
Posts: 435

It is never easy to send your kiddo into the OR! Hopefully this gives him what he needs though. (((hugs)))

sarahsunshine's picture
Joined: 11/29/06
Posts: 1462

That's coming up quick. We're thinking about him and hoping for the best.

Joined: 11/28/06
Posts: 848

I can't even imagine how nervous you must be! I lose sleep over doctor's visits! lol
Definitely praying for your family right now!

Joined: 12/01/05
Posts: 1000

Thanks, you all. I have him home right now. His symptoms are so bad right now and so unstable that I can't send him to school. His neuro wants me to keep him home until after the surgery. Fortunately, we have an aide during the day and a nurse at night, 5 days/nights a week, so that helps.

sarahsunshine's picture
Joined: 11/29/06
Posts: 1462

Wow - That must be tough on everyone. How are the other kiddoes dealing with this?

Joined: 11/28/06
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Poor thing! Continuing to pray for him.....

Joined: 05/05/04
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(((hugs))) to you and the whole family!

Joined: 12/01/05
Posts: 1000

"sarahsunshine" wrote:

Wow - That must be tough on everyone. How are the other kiddoes dealing with this?

They are all kind of taking it in stride. It's been over a year since he started to get really bad, so they are used to it. We are trying not to talk about the surgery too much because it will cause him major anxiety and make his symptoms worse. The little ones are cute. They seem to understand what's going on with him. They will help him out with things and say, "he can't do that right now because he's shaky." One day, our 4-year-old daughter said, "If Isaiah doesn't sleep, he gets the Sonic." I had to think about it for a minute before I realized she meant he gets "dystonic." lol. But amazingly, we haven't had a lot of acting out. That may come later, during or after the surgery.

sarahsunshine's picture
Joined: 11/29/06
Posts: 1462

I'm glad everyone else is taking it in stride. I know that Ivy has been amazing with Skyler and his surgery. She was always excited to go see him at the hospital, wanted to make sure that no one hurts his “big owie”. In fact, now she’s always asking if “Skyler’s owie is all better.” In fact, last night, she was playing with a stuffed animal who was “sleeping because he had a big owie on his chest and needs to sleep to make it better.”

I hope that things stay quite calm around there, and that this helps Isaiah. Thinking of you guys often.

Joined: 12/01/05
Posts: 1000

Thanks. He had a pretty big setback that was likely related to a sinus infection, but he is hopefully getting a little more stable now. We just need to keep him stable until Monday.

Joined: 05/05/04
Posts: 435

There are some seriously bad colds going around my area, with lots of sinus problems. I hope he gets better quickly!

gardenbug's picture
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All my best wishes for you next week!!!! :openarms:

Joined: 11/28/06
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Thinking of you today!

CamelNoodle's picture
Joined: 07/28/04
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Thinking of you and Isaiah today. :bigarmhug:

sarahsunshine's picture
Joined: 11/29/06
Posts: 1462

Thinking of all of you today. Sending positive vibes your way...

Joined: 05/05/04
Posts: 435

I hope we get a good update from you soon!

Joined: 12/01/05
Posts: 1000

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.

p.s. Sarah, I forgot to mention that it's so cute about Ivy and the "big owie." Cherish looks out for Isaiah and tries to help him out. She says, "Isaiah can't do that right now because he's shaky."

Joined: 05/05/04
Posts: 435

That cath issue sounds painful Sad Other that that, I'm glad that it seems like the surgery did what it needed to. I hope he gets better soon so he can get home!