3rd hospital stay!

Have a child with SM/Chiari? Share issues unique to children and their caregivers.

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3rd hospital stay!

Postby Catherine » Sat Mar 27, 2010 11:49 pm

Hi,

My daughter, Catherine, 4 yrs old had decompression for Chiari 1 on Feb. 23. Since then she returned to the hospital twice for pressure issues. She was just released yesterday after 8 days in PICU. She had a lumbar drain and drained for 7 days and was observed for another 24 hours. She had a lot of problems in the hospital. She was completely out of control and they had to use a lot of meds to keep her down. In fact when they went to take the drain out they gave her anesthisa to put her to sleep and she never went to sleep! They even gave her an extra dose! We had Psychology and Psychiatri, and Neurology visit us. I had to stay there almost around the clock because I was the only one she would kind of respond to. At the end though after she had been drained she was doing pretty good. She even started painting and talking and laughing with some of the nurses and doctors. We were released last night and she started throwing up when we got home and has had a terrible headache all day today. She finally just fell asleep (I don't know for how long). I am just beside myself. I can't stop crying! I don't know what to do at this point. She's miserable, I'm miserable. We have 2 other children and I just can't do anything for them because I'm the only one she'll allow near her. During all of this we found out that she has Long QT, which is a heart condition that I have, so the other 2 just had EKG's and my 2 year old has it as well along with another heart condition. My 6 year old has symptoms but his EKG was fine, so all 3 of them are going to see the Cardiologist but I don't know when because I may have to take Catherine back to the hospital, again!

I'm so depressed. Any thoughts on this situation.

Crystal
Catherine
 
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Re: 3rd hospital stay!

Postby lcolangelo » Sun Mar 28, 2010 7:16 am

I am so sorry you are going through this. I'm sending you prayers for strength to get through this-- hang in there.
Lisa
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Re: 3rd hospital stay!

Postby jupes » Sun Mar 28, 2010 8:02 am

Crystal,
So sorry you are dealing with all of this! You are a terrific Mom so hang in there! Sending you (((HUGS))) and keeping you all in my prayers!
Julie
14 yr old DD with CM 0/SM and mild scoliosis.
"Trust in the Lord with all your heart and lean not on your own understanding" Proverbs 3:5
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Re: 3rd hospital stay!

Postby Sara » Sun Mar 28, 2010 8:47 pm

Was a shunt discussed for your daughter? If she was symptom free while drained and symptomatic after the drain was removed than it sounds liek she is suffering from raised ICP. If this were my child I would want to know what the reasoning was behind removing the drain and sending her home. Usually when they do a trial like that they will clamp the drain and make sure the child does not have a return of symptoms before removing it and sending them home. Is she on meds to lower her ICP such as diamox?
Sara
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Re: 3rd hospital stay!

Postby nature » Mon Mar 29, 2010 11:36 am

I am so sorry for your situation. I wish there were words to help! I am praying for your family, I too am so worried about my child. Please keep us updated and I will be praying for you all! Hang in there! We cant ever give up!

Nature
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Re: 3rd hospital stay!

Postby memom » Tue Mar 30, 2010 8:35 am

Hi Crystal,

I just wanted you to know I am thinking of you and your family. I hope and pray and that you find answers and peace. I know how hard it can be at times, but you must be strong for yourself and your children. Please keep us posted and know we are with you in spirit.

Lauri
Mother of a beautiful 9 year old girl with CM 1.5, SM T 5-8 and Hypermobility. Decompressed 7/09.
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Re: 3rd hospital stay!

Postby Catherine » Tue Mar 30, 2010 1:54 pm

I wanted to say thank you to everyone for the responsightytes. They did clamp her drain and test her pressure levels before removing it. On Sunday morning we returned to the hospital for severe headaches and vomiting. We had an MRI yesterday and it looked good, the best one yet. I'm confident now that she is not building up more fluid we just have to try to manage the pain at this point and hopefully that pare will resolve soon. She was not able to handle the Diamox at all and is still having psychotic episodes. She has stopped vomiting and stopped complaining of headaches now. We actually were released from the hospital at 10 last night because they could not handle her pyschotic episodes and felt she would be better off at home. I'm hoping these go away as well. No one has an answer for me about these. She did have significant changes to her brain structure so they are not saying it is all behavioral but they belive it could be a combination of factors.

At least we are home.

Crystal
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