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Help for my 1 month old. Dr or Neurologist?

kjcba8101

kjcba8101

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Dec 9, 2007
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my one month old got RSV and went without oxygen for a while. Her vitals are good, brain function is low. Is there anything we can do during this recovery period? Such as reading to her or playing music, to help generate brain function.

We are devastated. Any help would be amazing.

Thank you.
 
Not a Dr. or neuro but I can throw a prayer your way. Both my daughters had RSV but never got serious. That is just terrible. Hang in there.
 
I cannot help in the way you are asking but will certainly offer some prayers on behalf of your daughter for a full recovery and for strength for your family.
 
Thank you fellas. We are hanging in there. I'm trying to do everything in the world to help my daughter.
 
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Thank you guys. The hospital neurologist came by and said there has been a marked improvement in her brain function. She really gave us some hope when I didn't have that much. We are a long ways from being out of the woods but there is reason for hope.
 
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I'm so sorry to hear this. My heart truly aches for your family. We will put you all in our thoughts and prayers.
 
I'm hoping that you get another good report. Prayers being sent from us.
 
Thanks guys. We will be at the hospital for multiple days. Not sure where it's gonna go from here. The Drs seem to be saying the right things, but I don't want to get unrealistic about what to expect. Appreciate all the kind words.
 
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There's nothing more heart-breaking than children in the hospital. Having an infant there is hard to imagine. I told my wife and we've been thinking of her all day and will continue to hope that the doctors are able to keep bringing better news every day.

The human body is amazing and at your daughter's age, if she's showing improvement already, I believe her brain will recover and continue to grow and mature and she'll not be affected by this.
 
Elijah ended up with RSV when he was five weeks old. Scared the crap out of us. One of the things I'm a true believer in is the NoseFrida Nasal Aspirator. It seems really gross but I highly recommend for anyone with a new baby.
 
Thank you, gentlemen. Your prayers and little things that help are awesome. We are at st Francis children's hospital and the care has been great. We just hope our little one continues to fight and make progress.
 
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Wow, thoughts and prayers for sure. Please continue to update. Any parent's heart aches at something like this. I hope someday this is a story of overcoming adversity for your family.
 
Update-the neurologist said today's EEG looked good. We have gained hope. It's been an emotional roller coaster for us this far and it's not over yet. Tomorrow they will do an MRI. They are reducing her sedation and are weaning her off the ventilator. The MRI will tell a lot. We pray that it shows good things. Today was one that gave me hope. I know that tomorrow may bring something different, but today was a good day. Please continue to pray for us.

Thank you all.
 
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kjcba8101 said:
Update-the neurologist said today's EEG looked good. We have gained hope. It's been an emotional roller coaster for us this far and it's not over yet. Tomorrow they will do an MRI. They are reducing her sedation and are weaning her off the ventilator. The MRI will tell a lot. We pray that it shows good things. Today was one that gave me hope. I know that tomorrow may bring something different, but today was a good day. Please continue to pray for us.

Thank you all.
Click to expand...

There we go! Now we're getting somewhere! Glad to hear the great news. Keep it coming.
 
Thanks AB. I'm trying to temper my optimism. My brother was killed in a car wreck in 03 when he was 20, so I'm a bit jaded and sometimes overly concerned when bad things happen to my family. So, I'm cautiously optimistic. We will see. People keep asking what they can do for us. I keep telling them that we just need the support and kind words from friends and family. That's what makes this thing tolerable. I say in the most sincere way possible-thank you.
 
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Update from my wife:
MRI will not happen till Monday or Tuesday. So they will be re-weaning her from Ventilator and Sedation today and through the night. Hopefully to be fully off by this time tomorrow morning. They will however need to re-intubate and re-sedate to perform the MRI which is not what we hoped for. But the fact that all signs are positive and we are a go to fully wean her is great! Prayers that her little body handles the weaning well and that mommy can stay strong watching the difficult process. They will have to fully wake her up to ensure she can breath on her own and then they will remove the vent tube. So she will be completely aware that all the cords and tubes are in her. Praying for a speedy process!
 
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kjcba8101 said:
Thank you guys. The hospital neurologist came by and said there has been a marked improvement in her brain function. She really gave us some hope when I didn't have that much. We are a long ways from being out of the woods but there is reason for hope.
Click to expand...

Great step forward! Prayers for your daughter and your family. Please update when you can.
 
The primary doctor said really good things today. I'm cautiously optimistic. We are so thankful to be where we are now. We are in the pediatric ICU, so we are constantly reminded of the situation we are in. We have posted everyone's name on the wall (post it notes) who is praying for us (from a Facebook group) . Not sure if you guys were able to see the Facebook updates or not from that link I posted. Anyways, Blaise is doing better. We are making progress. Praise God.
 
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kjcba8101 said:
The primary doctor said really good things today. I'm cautiously optimistic. We are so thankful to be where we are now. We are in the pediatric ICU, so we are constantly reminded of the situation we are in. We have posted everyone's name on the wall (post it notes) who is praying for us (from a Facebook group and friends and family that we know of) . It's pretty cool to see all those peoples names on the wall. Not sure if you guys were able to see the Facebook updates or not from that link I posted. Anyways, Blaise is doing better. We are making progress. Praise God.
Click to expand...
 
Not sure if you can see this, but here is a picture of the sticky notes with everyone's name who's praying for us. Note-I don't know any of your real names so I didn't add them. If you'd like to, I will put your names on the wall. Don't feel obliged if you don't want to. It's pretty cool to see so many states and even countries with people praying for us.



 
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Hang in there! Will be praying for continued improvement.
 
Wonderful news!!! Keep the updates coming. So happy for you all. Will pray progress continues.
 
My niece spent her first month in the St. Francis infant ICU. It was touch and go for what seemed like forever. She had to have emergency attention from the doctors several times. That was 5 years ago and she is a healthy, beautiful little girl full of life.

Your in the right place. I know in my heart your daughter is going to recover from this. Baby's are amazing in their ability to regenerate.
 
She has been off the ventilator and sedatives for about 8 hours now. I was pretty nervous as they took her off the ventilator, but she did as good as she could have. We have an MRI tomorrow. Please keep praying as we know God hears our prayers.

Thank you all for the encouragement.
 
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Amazing how resilient children can be. Great news, hopefully a lot more on the way.
 
Praying for more good news today ! Thank you God for the progress so far
 
Our daughters MRI came back perfectly normal. No abnormalities seen or issues at all. We are so thankful for our babies health and for everyone that has been praying. I feel like my girl has been given a new life. I cannot tell you how thankful I feel. Say some prayers of thanksgiving.


 
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