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Autism - Support Across the Spectrum Autism - Support Across the Spectrum

Samuel update

Posted by on Mar. 4, 2014 at 9:22 PM
  • 15 Replies

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I guess things could def be worse. As most of you know we spent a week at children's hosp of Philadelphia. I keep having to bring Samuel to his ped as he isn't improving. Last night was our 3rd visit to the dr. Samuel is wheezing, coughing, and has horrible diarrhea with a diaper rash now. The dr switched his formula once again to soy and told me to add rice cereal. His Zantac is increased to 3x a day. We got new butt creams. His lungs sounds have worsened so he gave us albuterol with a Nebulizer. He has gained a few ounces so I'm grateful. We are being referred to GI specialist at chop now. The Nebulizer went horribly wrong. He was gittery which I expected as Ryan was on albuterol as well but it made his tic worse so I had to stop it. Well Samuel was hysterical for 20min after his treatment. He couldn't catch his breath. Samuel seriously never cries so it was so hard to see. We tried one more treatment and it went the same. I called the dr and he said to stop. So now I'm just doing his chest PTs and we go back for a weight check. Through all of this Samuel is a fighter who still smiles. I'm truly lucky to have him. Thank you all for your prayers and support while Samuel was in the hospital and now too.
by on Mar. 4, 2014 at 9:22 PM
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Replies (1-10):
Momof4AEMW
by Gold Member on Mar. 4, 2014 at 9:25 PM
1 mom liked this

I always smile at his pics.  I just want to pinch his little cheeks!!!  Did they rule out RSV, pneumonia, influenza?  Poor little guy.  Hugs and prayers!!  Hang in there mama! 

MomOfOneCoolKid
by Gold Member on Mar. 4, 2014 at 9:32 PM
1 mom liked this

 

Quoting Momof4AEMW:

I always smile at his pics.  I just want to pinch his little cheeks!!!  Did they rule out RSV, pneumonia, influenza?  Poor little guy.  Hugs and prayers!!  Hang in there mama! 

 me too. Hugs mama

NiyasMom1
by Bronze Member on Mar. 4, 2014 at 9:32 PM
1 mom liked this
He's adorable!!! Hugs and lots of prayers for you all!!!
charley31
by Bronze Member on Mar. 4, 2014 at 9:34 PM
He tested positive for rsv and negative for the rest. No chest films which I wish the dr would do. But he isn't running any fevers so they don't think pneumonia. He's still at risk for it so I can't give him tyenol for the pain he's in since the drs are afraid it will mask the early signs of pneumonia. Thank you for your prayers.

Quoting Momof4AEMW:

I always smile at his pics.  I just want to pinch his little cheeks!!!  Did they rule out RSV, pneumonia, influenza?  Poor little guy.  Hugs and prayers!!  Hang in there mama! 

Momof4AEMW
by Gold Member on Mar. 4, 2014 at 9:38 PM

That's right.  I do remember that now, but forgot.  

Have your doctors talked to you about a synagis shot?  It won't heal an RSV break out, but it is a shot that helps prevent it in very young children so may keep him from getting it again this season.  It is a terribly expensive med though, so you'd want to make sure it could be approved and covered.  My triplets had the preventative shots their first couple years of life because they were on oxygen and lungs could not handle an illness like this.  It may not be right for you or your family, but if you are interested, I'd ask your doc at your next visit about if it would be an option for him.  You guys have been through so much, I'd hate to see him get this again! 

Quoting charley31: He tested positive for rsv and negative for the rest. No chest films which I wish the dr would do. But he isn't running any fevers so they don't think pneumonia. He's still at risk for it so I can't give him tyenol for the pain he's in since the drs are afraid it will mask the early signs of pneumonia. Thank you for your prayers.
Quoting Momof4AEMW:

I always smile at his pics.  I just want to pinch his little cheeks!!!  Did they rule out RSV, pneumonia, influenza?  Poor little guy.  Hugs and prayers!!  Hang in there mama! 

 

ineedcoffeemom
by Brittaney on Mar. 4, 2014 at 9:41 PM
1 mom liked this

Poor little one is going through soooo much .... and so are you! This dreadful winter needs to clear up, some sunshine and warm weather would be really good for his healing process. Hugs!!! Hope the soy formula works out.

charley31
by Bronze Member on Mar. 4, 2014 at 9:46 PM
Thank you for the info I'll ask the dr about that. His dr told me his lungs took a heavy hit and he's soo young so we prob need a pulmonary consult in the future.

Quoting Momof4AEMW:

That's right.  I do remember that now, but forgot.  


Have your doctors talked to you about a synagis shot?  It won't heal an RSV break out, but it is a shot that helps prevent it in very young children so may keep him from getting it again this season.  It is a terribly expensive med though, so you'd want to make sure it could be approved and covered.  My triplets had the preventative shots their first couple years of life because they were on oxygen and lungs could not handle an illness like this.  It may not be right for you or your family, but if you are interested, I'd ask your doc at your next visit about if it would be an option for him.  You guys have been through so much, I'd hate to see him get this again! 


Quoting charley31: He tested positive for rsv and negative for the rest. No chest films which I wish the dr would do. But he isn't running any fevers so they don't think pneumonia. He's still at risk for it so I can't give him tyenol for the pain he's in since the drs are afraid it will mask the early signs of pneumonia. Thank you for your prayers.
Quoting Momof4AEMW:

I always smile at his pics.  I just want to pinch his little cheeks!!!  Did they rule out RSV, pneumonia, influenza?  Poor little guy.  Hugs and prayers!!  Hang in there mama! 


 

Charizma77
by Carissa on Mar. 4, 2014 at 10:00 PM
1 mom liked this

Heartbreaking to see that sweet face knowing what all he's been going through. I wish I could hug him!

samomama
by Sally on Mar. 4, 2014 at 10:11 PM
1 mom liked this

Sweet sweet baby! I hope he feels better soon. I'll keep him in my thoughts.

aakeiser
by Silver Member on Mar. 4, 2014 at 10:13 PM
1 mom liked this
I hope he feels better soon.
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