Friday, June 19, 2009
Wednesday, June 17, 2009
Nebraska Medical Center is one of the bigger short bowel centers in the country. And they have started an Omegaven trial. YAHOOOOO.
"The Nebraska Medical Center recently began giving it to two children and intends to give it to Braxton and others soon to study its effectiveness. Dr. David Mercer, a transplant surgeon at the hospital, expects to enroll more than 100 children in the study over the next two to five years."
Friday, June 05, 2009
Thursday, June 04, 2009
Tuesday, June 02, 2009
Gib and I knew that it was coming sooner or later, honestly we were both hoping for later.
I was trying to get Ellie to go to sleep last night and she started crying and said. "Mommy, I want to go home now, I miss my dog Gus, my bed and my house. Why are we still here?"
As you can imagine that was the beginning of a long talk that I had been dreading. I tried to explain that she just had a big surgery on her belly and her stomach was still sleeping. That we needed to stay here to wait for it to wake up. Also that the doctors and nurses here were able to help her more than we could with just mommy and daddy at home.
But then I got, "But why do we always come to the doctor? We are here A LOT."
We talked more about it and how we were working with the doctor to make her stronger and healthier. And how she was special and that this might take a while. I congratulated her on being such a strong and brave little girl and that she was doing a great job.
Then I got, "No I not brave, I'm scared."
I did the best I could with no prep. We talked for a long time, it was not easy or fun. Got her calmed down, told her my version of sleeping beauty and finally got her to sleep.
I laid there for a long time after she fell asleep just thinking and in awe that my 3 year old just had that conversation. I felt like I was talking to the 12 year old Ellie not the 3 year old. I also realized that Gib and I both need to get ready for more of this. That probably means talking to some one who specializes in this kind of thing. Luckily I think we are in the right place and will be able to talk to some one today.
It was hard seeing happy go lucky Ellie be so not happy go lucky.
Other than Ellie shaking her mother to her core, the night was uneventful and we both got a good night sleep.
She was up and ready to party at 5:50 this morning and has been playing ever since. We are still waiting for signs that her bowels are awake = clear fluids from NG and G tube, and better yet, farting or pooping.
They should warn you when your child gets diagnosed with short bowel syndrome, that your life will revolve around poop. Poop! Poop! Yea Poop! For now we wait and watch.
Monday, June 01, 2009
- 1 NG Tube to suction
- 1 G tube draining to gravity
- 3 EKG leads (to monitor her heart and breathing while she rides the morphine wave)
- 1 central line that branches to three spearate pumps
- 1 peripheral IV line in her right hand.
- 1 Pulse/Oxygen meter