gijanet
Well-known member
Hi, gang! Sorry this is long, but I really need some info for another heart mom of a little one with CHD and thought you guys might be able to help.
Rhonda's one year old daughter Chloe has very, very similar anatomy to Katie's (except her AV valve doesn't leak) and she also has a hypoplastic left ventricle, but this little girl has had a really tough time. I know we haven't had a cakewalk with Katie, but poor Chloe has had to have surgery about every three months from the Norwood to another BT shunt(because they couldn't do the glenn, although that was the game plan) to the Ladd's procedure (surgery to correct a malrotation of the bowel - our kids' stomachs are on the right)to another emergency intestinal surgery due to complications from the ladd's.................this little girl has been through the meatgrinder
and so has her mom Rhonda.
Chloe finally had her glenn (heart surgery rewiring the top half of her body's blood flow) last Saturday and she miraculously sailed through..........very unusual for Chloe, let me tell you. Soooooooo, by Monday she was back in the operating room due to a perforation in her intestines again (just had one last March)............a hole the size of a nickel . Chloe only weighs about 14 pounds, so this was no small hole. Thank God they were able to avoid a colostomy and she seems to be stable at this point............but now she has peritonitis and a possible fungal infection.
Rhonda is desperately wanting to talk to anyone with info on, or experience with, either one of these. I have to work tomorrow, so it will be late afternoon before I can check for responses, but if you will post me or PM me, I will pass on Rhonda's email addy to you so that you can relay any info that you might have.
Also, your prayers would be greatly appreciated as they are not out of
the woods yet. Thanks so very much. Janet Below is part of Rhonda's last
post. P.S. They live in Washington, but go to California for surgeries (Stanford, I think, wherever Dr. Reddy is); thus, they are separated from their six other kids pretty frequently, so prayers for the entire family would be great, too.
Part of Rhonda's last post:
Well we're doing a little better, but she's still seems out of it to
me. Not much fiest in her fiestiness. Concerns me. But I'll give it a
few days to see if maybe it's the infection/peritonitis causing the low
level of responsiveness. I met someone today who got a perforated bowel
during a colonoscopy, and she said she got a bad fungal infection as
well, and now I'm real worried, cause Chloe has a ton of fungal looking
urine in her foley. Do you think you could check with your group to see
if anyone else has any personal experience with peritonitis and fungal
infection? It's kind of funny though cause the heart docs were saying
to me she must have had the perforation before surgery, cause there was
a lot of this fibrogenic material all over her intestines and abdominal
cavity that made it look like it was an older hole. The GI surgeon said
like 2-5 days old. There is absolutely no way she could have had this
prior to the surgery. She was totally fine, absolutely wonderful at
times. (which made it even harder to go through with the Glen in the
first place) Anyways, her vitals are more stable now even if she does
look like a Mack truck ran over her. I'll keep in touch, but if you
could ask about that peritonitis, it would be so much appreciated. Lots of
love
--
Rhonda, mom to Megan 19, Micah and Derek 16, Taylor 7, stepmom to Nick
14, and Cory 12 (all HH) and Chloe 1 year, with complete avsd, dorv,
hlv, coarctation, situs ambiguous/heterotaxy/polysleenia, interupted
inferior vena cava, and malrotated bowel,post Norwood on June 11 2003,
BT shunt November 2003, malrotation repair march 11 2004 and again march
18 2004.
Take care and God bless..................
Rhonda's one year old daughter Chloe has very, very similar anatomy to Katie's (except her AV valve doesn't leak) and she also has a hypoplastic left ventricle, but this little girl has had a really tough time. I know we haven't had a cakewalk with Katie, but poor Chloe has had to have surgery about every three months from the Norwood to another BT shunt(because they couldn't do the glenn, although that was the game plan) to the Ladd's procedure (surgery to correct a malrotation of the bowel - our kids' stomachs are on the right)to another emergency intestinal surgery due to complications from the ladd's.................this little girl has been through the meatgrinder
and so has her mom Rhonda.
Chloe finally had her glenn (heart surgery rewiring the top half of her body's blood flow) last Saturday and she miraculously sailed through..........very unusual for Chloe, let me tell you. Soooooooo, by Monday she was back in the operating room due to a perforation in her intestines again (just had one last March)............a hole the size of a nickel . Chloe only weighs about 14 pounds, so this was no small hole. Thank God they were able to avoid a colostomy and she seems to be stable at this point............but now she has peritonitis and a possible fungal infection.
Rhonda is desperately wanting to talk to anyone with info on, or experience with, either one of these. I have to work tomorrow, so it will be late afternoon before I can check for responses, but if you will post me or PM me, I will pass on Rhonda's email addy to you so that you can relay any info that you might have.
Also, your prayers would be greatly appreciated as they are not out of
the woods yet. Thanks so very much. Janet Below is part of Rhonda's last
post. P.S. They live in Washington, but go to California for surgeries (Stanford, I think, wherever Dr. Reddy is); thus, they are separated from their six other kids pretty frequently, so prayers for the entire family would be great, too.
Part of Rhonda's last post:
Well we're doing a little better, but she's still seems out of it to
me. Not much fiest in her fiestiness. Concerns me. But I'll give it a
few days to see if maybe it's the infection/peritonitis causing the low
level of responsiveness. I met someone today who got a perforated bowel
during a colonoscopy, and she said she got a bad fungal infection as
well, and now I'm real worried, cause Chloe has a ton of fungal looking
urine in her foley. Do you think you could check with your group to see
if anyone else has any personal experience with peritonitis and fungal
infection? It's kind of funny though cause the heart docs were saying
to me she must have had the perforation before surgery, cause there was
a lot of this fibrogenic material all over her intestines and abdominal
cavity that made it look like it was an older hole. The GI surgeon said
like 2-5 days old. There is absolutely no way she could have had this
prior to the surgery. She was totally fine, absolutely wonderful at
times. (which made it even harder to go through with the Glen in the
first place) Anyways, her vitals are more stable now even if she does
look like a Mack truck ran over her. I'll keep in touch, but if you
could ask about that peritonitis, it would be so much appreciated. Lots of
love
--
Rhonda, mom to Megan 19, Micah and Derek 16, Taylor 7, stepmom to Nick
14, and Cory 12 (all HH) and Chloe 1 year, with complete avsd, dorv,
hlv, coarctation, situs ambiguous/heterotaxy/polysleenia, interupted
inferior vena cava, and malrotated bowel,post Norwood on June 11 2003,
BT shunt November 2003, malrotation repair march 11 2004 and again march
18 2004.
Take care and God bless..................
