we are at home with kai right now. we have a nurse visiting 3 time/week and we have to go down to dc once/week to have her bloodwork done to make sure she is still stable. she is expected to get progressively worse as we await transplant. she is on the donor list and ryan may be able to give her a piece of his liver but, we still have to get her bigger for that.
she has a feeding tube and is being force-fed a combination of my breastmilk and a special formula that helps her absorb the nutrients from the milk that she needs as her liver is not functioning properly.
she is gaining weight quickly now because of this where as, before, she was becoming malnourished because her body wasn’t processing the milk she was taking in correctly.
her belly continues to swell and her belly button is herniated but, we’re told, this does not cause her any pain.
she is still happy and smiley (when no one is taking her blood or otherwise poking and prodding her. we should find out by next week if ryan will be able to donate. if she gets any sicker (begins bleeding internally again, develops encephalitis, etc.) she will be hospitalized again and the surgery may need to be moved up before she gets much bigger, which could cause additional complications.
keep your fingers crossed for her... she is a very sick little girl.
thank you to everyone. the outpour of love and support has been overwhelming. i’m sorry i haven’t responded to everyone but please know that we deeply appreciate all of the prayers, well wishes and offers to help.
my family and friends are setting up some fundraising efforts and a donation site. once that is posted, i’ll let you know, for those of you who have offered/asked. whatever we don’t use will be donated to the hospital that is caring for kai to help families less fortunate than ours and to fund pediatric transplant research.
she has a feeding tube and is being force-fed a combination of my breastmilk and a special formula that helps her absorb the nutrients from the milk that she needs as her liver is not functioning properly.
she is gaining weight quickly now because of this where as, before, she was becoming malnourished because her body wasn’t processing the milk she was taking in correctly.
her belly continues to swell and her belly button is herniated but, we’re told, this does not cause her any pain.
she is still happy and smiley (when no one is taking her blood or otherwise poking and prodding her. we should find out by next week if ryan will be able to donate. if she gets any sicker (begins bleeding internally again, develops encephalitis, etc.) she will be hospitalized again and the surgery may need to be moved up before she gets much bigger, which could cause additional complications.
keep your fingers crossed for her... she is a very sick little girl.
thank you to everyone. the outpour of love and support has been overwhelming. i’m sorry i haven’t responded to everyone but please know that we deeply appreciate all of the prayers, well wishes and offers to help.
my family and friends are setting up some fundraising efforts and a donation site. once that is posted, i’ll let you know, for those of you who have offered/asked. whatever we don’t use will be donated to the hospital that is caring for kai to help families less fortunate than ours and to fund pediatric transplant research.
No comments:
Post a Comment