Any moms of babies that have had a stroke AND/OR have a trach & g-tube?

[HappiestMom]

Anyone that has an little one that has had a stroke and or a trach (or had a trach or tube) that has been out of the hospital for a while?

I have so many doubts and questions and just down feelings about our whole situation and need someone that is a few steps ahead in this journey to let me know it will all work out and that it is possible to deal with even though the beginning will be challenging... just having a bad day emotionally I guess..B is almost 11 months old and has had a stroke..was diagnosed with a large cancerous tumor (since removed) has a trach..g-tube..chemo port...and will be undergoing chemo and radiation later this year just to give you an idea of what I will be working with...

 

[Aidedhoney]

Hi,

My son Alex had 2 strokes age 18 months following surgery for a heart defect, he will be 2 years post strokes in december
When he first had his strokes the future wasnt painted in a good light, i learn new things every day about dealing with a child whos recovering from a stroke and am lucky enouch to be in touch with a few other mums whos children have had strokes.


Alex had to relearn how to do everything after his strokes he couldnt walk, talk,sit or eat. Less than 4 months after he was back on his feet, i was told he wouldnt make it but hes kicked ass big style x

 

[Eccleston2011]

I don't know how much help I will be... but my daughter had two strokes in utero. She is 5 months now. Her development has been slow but I think its because she is so young. She doesn't use her right hand and we go to therapy. If you have any questions please feel free to message me.

 

[Lottie86]

I can't help with regards to strokes (my only experience is with neonatal IVH) but I have *lots* of experience of feeding tubes and Hickman lines if I can be of any help. Some of my friends have children with trachies so I could put you in touch with them if you wanted xx