Heather update....

Her surgery began around 1:45 Tuesday, April 29th. The day after her daddy's 37th b-day.
The surgery lasted a little over 6 hours. The surgeon, Dr. Shindle, had a nurse call us and update us in the waiting room regularly. He had originally planned for 3 hours, but in light of her liver disease, and bad portal hypertension, there were a lot more blood vessels than he had anticipated. We aren't sure whether or not she will be able to have the future operations to close the ileostomy, or not. We just have to wait and see if her sick liver will heal enough to get her through the other operations before she gets her transplant. It's probably not likely to happen if she has to get the transplant first. The immunosuppressants would make it hard for her to heal, from my understanding.

She went straight to the ICU post-op. While it's nice to get all this one on one care for her, there's even less privacy than on the GI floor.... I slept in my clothes, but was called directly after laying down by the charge nurse for the gi floor. I needed to come move all of Heather's stuff out of her room. Two large rolling carts, and one big red wagon filled with clothes, stuffed animals, books, magazines, plants, balloons, etc.. We've been waiting all day to get back to her normal floor.

hmmm

Her latest colonoscopy on Tuesday showed horrible ulceration. The ulcers "mine" through her intestines. The Dr. said "It doesn't get any worse than this."

This Tuesday Heather is having her large intestine removed, and a "temporary" ileostomy formed. If all goes well, she will get a j pouch formed out of her small intestine in a few months. Then, a few months after that, they will connect her small intestine to the j pouch, and remove the ileostomy.
She's had an ostomy for bile diversion since she was 1 yr. old, but the contents of the new pouch is offsetting to her. I hope all goes well and she will be able to get it temporarily. Strange that she's going from having one bag her whole life, to two bags for a little while, and potentially NO BAG after her liver transplant once all this intestinal stuff is cleared up.

Here's a possibly better description of what she'll be going through...
http://www.uptodate.com/patients/content/topic.do?topicKey=digestiv/10295

There's some pics on my photobucket.. some of Heather's stay here at Children's Hospital in Dallas, some are pics I've taken when home to see my other sweet girlies on the weekend.

http://smg.photobucket.com/albums/v284/Cathyt71/

Blah...

Still at the hospital. Remicade was the wrong choice. She tested postive for CMV over the weekend after they already had the super strong immunosuppressant in her system. She's received immunoglobulin, cytogam, gangcyclovir, etc.. trying to fight the virus, in spite of remicade fighting to suppress her immune system.
She's still passing blood.

Her H@H (hemoglobin, and hematocrit) were 7.5 this morning... not the lowest it's been, but not conductive for healing.

She's slowly gaining back some of the 30 lbs lost, but it's taking a highly caloric TPN dose.

No pictures... I'm blogging from Heather's laptop (compliments of MIL) and I lack the patience for dial up since getting DSL at home. Not to mention putting pictures on her laptop is very time consuming.

More on Heather

She's still there.. started remicaid two nights ago.
She got a PICC line on Monday. She's been getting TPN (total parenteral nutrition) through the PICC line for about 4 days. She's slowly gaining back some of the 30 lbs she has lost while on IV fluids, and nothing by mouth but a few of her meds that can't be mixed into the TPN, or given in a bolust through the IV pump.
I feel awful everytime I leave her for a few days. She's been trapped in her room since March 13th.
She's got to have one more negative stool sample before she can leave the room and look at something other than the damn brick wall outside her hospital room window. She's got the biggest room on the floor, but the crappiest view ever.