To Jodi R

[Guest guest]

Hi Jodi,

is only 8 days younger than Jillie having been born on May

16th! Can't wait to meet you both. I'm arriving Thurs am and my appt

with Dr H is at 2pm.

Does have a fundo? I assume he does have a GT.

Normal respirations for a 2 yr old should be in the mid 20's to low

30's. Any acute or chronic respiratory problem is going to make him

breathe faster than the normal baseline. Assuming he is well, his

previous aspirations have likely caused some chronic changes in his

lungs whereby he has a % of his lung tissue that is not as effective

as the rest. This is unlikely to be permanent and improves when the

child grows in length and grows healthy lung tissue. is

compensating by breathing a little faster to ensure his body gets the

volume of oxygen it needs. Is his breathing different than usual?

My daughter breathes 40 to high 50's at all times. Much higher rate

when she is sick with anything. She needs O2 to sleep, when she is

sick or cries, otherwise she is fine breathing in RA albeit at a

faster than normal rate. But that's her current baseline. Eventually

she'll improve now she no longer aspirates.

We'll chat more in a few days.

> > Hi Kim and Jodi,

> > Have been following your posts on your boys who seem to have

> followed

> > a similar path to my daughter Jillie. She is 26 months and was in

> > hospital 10 times in the first year and still requires nursing

care

> > for oxygen need etc.

> > Jodi, I know your son is a similar age to Jillie. I think you are

> the

> > one that J told me about a few months ago when I spoke to

> her.

> > She said there were only a few RSS kids who had had significant

> lung

> > problems because of aspiration pneumonias. I hope we get a chance

> to

> > chat at convention. You have a handsome boy!

> > Kim, I am heartened by the fact that your son is no longer on

> oxygen

> > and is doing better. How old was he when he no longer needed

> oxygen??

> > You mentionned he had years of feeding therapy. How does he eat

> now?

> > Jillie got a GT and tongue lip adhesion at 3 months, several

GJT's

> > which all intussusscepted (obstructed her jejunum), a fundo and

> > central line placement at 7.5 months and reversal of tongue lip

> > adhesion at 11.5 months. She had many ICU admissions with

> pneumonias.

> > I felt I should just give up normalcy and move into the hospital.

> > This year has been better but her speech, feeding, occupational

and

> > physical therapies are pretty gruelling. However, anything is

> better

> > than being in the hospital.

> > Hope to see you both next week!

> >