Saturday, April 4, 2009

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. 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 and DIC They cut off more of her colon and reattached again. She came out of surgery with a stoma 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, 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 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" 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


  1. Popeye, Grandma SueMom, Ben and Amy---
    Thinking of you and praying for you all tonight.

  2. Ben, Amy, and Remi we are all praying for you.Remi is a fighter and a true inspiration. Much love
    Tony and Courtney

  3. I look at this daily! It is so nice to be able to keep updated through this blog site. I pray and pray for you guys each and every day!
    much love! Kasie and Family

  4. Sending love and prayers your way....

  5. Hi guys,

    Brendan and Kristi are in town today! We all convened at Mom and Dad's to visit. Hence, we are doing what Shaw's do best: eating and drinking! However, we just got finished reading Remi's update. You have all (including Grandpa Popeye and Sue) been the focus of much of our conversation today. We all wish we could do more.

    We just finished sharing stories of how each of us have very dear friends with children with DS. Kristi suggested you check out Gigi's playhouse:

    Your are in our thoughts and prayers. Thanks for keeping us posted. We are all referring people to the site to read and offer any advice. Hang in there guys! LOL The Shaw Clan

  6. As we sit and look/read this blog multiple times a day: SPEECHLESS is the only way to describe it! I think to myself how beautiful...your daughter, your peotry, your unconditional love and how lucky we all are to be parents!! No one tells you when you decide to start a family how hard it is to be a parent or how easy it is to fall head over heels in love with your child! Not a day goes by that we dont send out a special prayer for Remi!

  7. Hello Amy and Ben

    We just wanted to post you a message to let you know that Baby Remi and all of you are in are thoughts and prayers.
    Take Care
    Kevin & Luanne