- hi amanda
how are you doing i hope jacob is feeling better,is he home from
the hospital im sorry i dont know if he is or not I hope he is or
soon will be . I would like to wish him and early happy bithday I do
hope that he will enjoy his day.Please take care of yourself talk
- Dorothy, Thanks so much for asking about Jacob. He is home, but
still a little sick. He is having a much harder time than before
coming off of the vent. He is kind of stuck at 6bpm and doesn't
like being off. He may be telling us something - maybe he needs it
more than we think. Oh well, I guess time will tell. He may just
need a few weeks to recover from a pretty significant pneumonia. I
am still just really shocked how quickly it came on. One day he was
fine - high sats, normal hr, off the vent, playing, just being
Jacob - then the next day, it was a completely different story. I
am just usually really good about knowing when he is getting sick
and being able to start more nebs and cpt before he gets too bad.
We actually have a nurse who started today. She will be helping me
out at least until Jacob is back to himself, and also help me take
him to dr's appts. I am excited to have the help, but it is going
to be hard to adjust to having a stranger in our home.
It is hard to believe that Jacob will be 2 in 6 days - he is getting
to be such a big boy. I think we will be putting his party on hold
Happy birthday to Nic, also!!
Take care, Amanda
--- In Myotubular_Myopathy@yahoogroups.com, "dotj67"
> hi amandafrom
> how are you doing i hope jacob is feeling better,is he home
> the hospital im sorry i dont know if he is or not I hope he is ordo
> soon will be . I would like to wish him and early happy bithday I
> hope that he will enjoy his day.Please take care of yourself talk
> again soon,Dorothy
- Amanda, So glad to hear Jacob is home. Sending lots of (((((healthy
vibes))))) that is soon back to feeling great!
He might be letting you know he still needs the vent to an extent. Not
sure dont have any experience with them
Keep us posted. take care pat