[tri-med] Re: Status Update: Anthony Arritola Prayer Request

(((Janina))), we continue to keep you and your family in our prayers.
The breathing you describe sounds like my Becky, though Bec will slow to a
stop (respirations, BP and heart rhythm) anytime she was laid on her back as
an infant. Now it takes a little longer but she cannot last an hour in that
position. Either myself or a night nurse is with her constantly when she
sleeps to reposition her when she begins to desat.She has to stay almost
completely on her side, even the position of her shoulders seems to make a
difference. I think what is happening is that she shunting and when we
reposition her the shunting is reduced???
She also reacts abnormally to several common meds. These cause her
respiration and heart rhythm and BP problems even in small amounts, nitrous
oxide, codiene, oxoycodone (as in most pain meds), buscopan and several
others (even domperidone, which we had to stop this spring). Following her
gallbladder surgery last summer all her pain medication was withdrawn until
she was on only regular tylenol just days after the surgery. It seemed well
able to handle the pain.

My heart goes out to you at this very painful time.


Catherine, mom of Becky (31yrs. Trisomy 13 Mosaic)


                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

Other related posts: