Remi was only home 3 days when Ben & Amy realized something was wrong with her color. It was determined that she had jaundice and had to be hospitalized. Further testing indicated that she had a rare disease called Hirschsprung's. http://en.wikipedia.org/wiki/Hirschprung Surgery to correct this was on Thursday, March 26. They cut off the very lower part of her colon up to the healthy area and reattahced.
She came out of surgery and it was called a big success. However, it wasn't. Soon after, she began swelling and blood was pooling in her body. Second surgery occured the next day. It was determined that she got sepsis http://en.wikipedia.org/wiki/Sepsis and DIC http://en.wikipedia.org/wiki/Disseminated_intravascular_coagulation. They cut off more of her colon and reattached again. She came out of surgery with a stoma http://en.wikipedia.org/wiki/Stoma_(medicine) and her swelling was so bad they could not close her incision.
We are now on day 9 since surgery with no urine output. She is bloated to at least twice her normal size and weight due to third spacing of fluids, http://en.wikipedia.org/wiki/Third_spacing_of_fluids. She is on a ventilator and 4 IV poles each with 4 bags of fluids and medicine keeping her alive until her kidney's kick in. Still waiting.
As of this morning the pediatric nephrologist now back from vacation has made minor adjustments in her treatment to again try to get some urine output. They will watch her over this weekend and re-assess the situation on Monday to determine next steps. 1 option would be to move her to another hospital where they may be able to perform dialysis. This would get the fluid out her body and potentially allow them to fix a heart problem called PDA http://en.wikipedia.org/wiki/Patent_ductus_arteriosus. With the PDA fixed there is more likelyhood that her kidney's would get the adequate blood supply and then begin to function.
Moving Remi is a last ditch effort or "Hail Mary" http://en.wikipedia.org/wiki/Hail_mary. She may not survive the trip. If she does, she may not survive the procedure, etc... She is a fighter though and we continue to hope and pray for a miracle.
Sue and I want everyone to know that Ben & Amy review this blog many times a day and truly take comfort and strength from your comments.
And so we wait and pray...
Popeye and Grandma SueMom