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Well, I hate to come on here and bring this up often, but I know a lot of you and some are like extended family. Thought I would add an update to the previous thread on my little girl.

We took her in for some tests at Children's on Thursday. When my wife gave her her morning meds and food, she started wretching and wanting to throw up. She is not able to throw up, due to a surgery she has had to prevent aspirating liquids or vomit into her lungs. She ended up sleeping completely through a bone scan and blood draws, then my wife tried to feed her again. Again she acted like she was going to throw up. Since my wife was already at Children's and my daughter has not been acting right, she decided to take her down to the ER.

With her symptoms of being lethargic, wanting to vomit and having had close to 80 siezures in the last 20 days or so, they got real concerned about the shunt she has in her brain. They took her back for a cat scan and noticed the ventricles in her brain were swollen.

The neurosurgeons and neurologists decided to relief some pressure from her brain by using a needle to go into the valve behind her ear. They removed some spinal fluid and kept her overnight for observation.

At this point things are a little tricky because if she perks up, it could mean her shunt is not functioning properly. She did perk up, and at this point has been discharged to us to keep an eye on. Most all of her doctors know that we (especially my wife) are very well in tune to her. We have to keep an eye on her and see what goes over the next few days. If she starts having the previous sypmtoms again, they may have to work on her shunt.

We are very nervous about this because her shunt has had to be externalized and revised before. Previous to this, the shunt worked great. Then Children's screwed up one of her feeding tubes, and the tubing had to be moved from draining into her abdomen to going directly into her heart.

I can't say how much the well wishes and prayers from you guys help. My little girl is everything to me, and needless to say I am scared to death right now. Please, again, keep her in your prayers. She is a special little girl.

Jim
 

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I wish nothing but the best for your daughter and your family.

I am not a deeply religious person but I believe there is a god and I believe it cannot hurt to say a few prayers in times of need. In return I try to do some good for those in need. Your in my area so if you need anything let me know.

I can only imagine what you are experiencing. I have a nine month old baby girl and I feel helpless when she is hurting and I can't solve the problem. I only know I can be there to comfort her. Again, I send my best wishes and I hope everything works out fine.
 

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best of luck to ya.

I hope they get everything figured out soon!
 

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Keep heart, kids bounce back from things that would knock you or I on our asses. Happens all the time. Good luck to you and yours.
 

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I wish you guys the best.

If you don't mind me asking, what is the diagnosis? I am not sure I saw the other thread.

My wife is an SLP on the inpatient rehab team at Children's. If you have any questions at all regarding speech/swallowing/cognitive abilities, or just want another resource at the hospital, PM me and I will pass along her number and email.
 

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My prayers and best wishes to your daughter, you and your wife.
 
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