It doesn’t look like we are heading home tomorrow. Whew! Even if we were to be discharged we would fight it because we don’t have any equipment, medications, a hospital bed or anything set up at home. It’s all in the works but nothing is at the house. We have stuff to pack up, furniture […]
10-03-2012
Change of Plans
We just found out that we may be going home Friday or maybe as early as tomorrow. We knew we were on our way out next week, but tomorrow..??? I honestly don’t know how that is going to work. We have NOTHING at home for Lily’s care. I know they are feverishly working on getting […]
09-27-2012
Preparing To Go Home
On Monday we moved out of ICU. Although we moved back to Miller West Rehab facility Lily is technically not in Rehab. Lily remains under a pediatricians care and still closely followed by her cardiologists and GI doctors. Our insurance company is not clearing her to return to Rehab right now. However she is still […]
09-23-2012
Back to Rehab … We Think
Lily passed the g-tube plastic disk yesterday….whew! Glad we can check that off the list. Lily seemed to be more comfortable afterwards and had a restful day yesterday. She started off having a peaceful day today but she still is having some kind of discomfort. It’s anyone’s guess as to what is bothering her . […]
09-22-2012
A Guessing Game
Lily had her GI procedure yesterday afternoon as scheduled. But wouldn’t you know it that when the GI doctor went down to fetch the plastic disk in her stomach it was no longer there! So her stomach must have squeezed it into her intestines and it’s hopefully on it’s way out. Why can’t Lily catch […]
09-20-2012
Another hurdle
Lily remains in ICU at Millers. We originally thought we’d be here a few days but it will be 3 weeks on Sunday. Lily has had a few more hurdles along the way. The jtube she had placed last Friday seems to be going pretty well. However she did catch a cold and has had […]
09-15-2012
Moving in the Right Direction
Yesterday, doctors were able to replace Lily’s g-tube with a j-tube. Now her feeds will go into her intestine; bypassing her stomach. It will also bypass her pancreas which has been irritated over the last week (doctors still are not sure why). And after this morning’s blood tests we found that her enzyme levels are […]
09-13-2012
From G to J Tube
We hoped Lily would be able to resume her feeds today but her pancreas continues to be irritated. The doctors do not want to make it worse by starting her feeds. They’re going to start sugar/vitamin/mineral water through her IV this evening. If her enzyme levels plateau it looks like we will switch Lily’s g-tube […]
09-12-2012
Lily Remains in ICU
Lily remains in ICU. She has been in ICU for over 10 days. Although her UTI is cleared up and her heart has been stable her feedings remain an issue. I ask of you for specific prayers for her GI resolution. Her body is not tolerating increased volume/consolidated feeds. Also, her pancreas cells are irritated […]
09-11-2012
Dealing with spasticity
First, thank you to everyone that participated in yesterday’s Bake Sale. I heard it was a huge success! I hope someone took pictures, I heard the homemade treats were incredible. I am so touched by everyone’s kindness and concern for Lily. Thank you from the bottom of my heart. Lily is still in the ICU […]
