Daisy's Second Hospital Stay

Daisy got along fairly well for 4 months after her initial hospitalization at birth, but when the cold and flu season of 2008-09 began to hit in October of last year, we began to see just how fragile this little baby was going to be.

The following is taken from a series of entries made in October of last year. Daisy had been admitted to Sutter Memorial Hospital and after getting her stable, underwent quite a bit of testing.

10/08/08

We're still here at the hospital, which gives me more time to blog than usual. I snapped this shot of Daisy and her mother resting. That's a feeding tube in her nose, and it doesn't seem to bother her too much. She has been taking the majority of her nourishment through the mouth, but if she doesn't take the prescribed amount, then we supplement it through the tube. We hope to go home Tuesday.

10/10/08

Today Daisy underwent a test to analyze her suck/swallow reflex. She drank a formula laced with barium as x-rays were taken. Unfortunately we found that she is "silently aspirating" meaning she is getting small amounts of formula in her lungs. This is bad because it can increase the risk of pneumonia. We will be proceeding very carefully with her nourishment. She also had an EEG today, which analyzed brain activity. That test came back normal, as expected. So it's a mixed bag. Her geneticist today said he is becoming more and more confident that this is a single gene mutation which has caused a protein deficiency affecting her muscle tone. If this is the case, then she will likely have minor problems throughout her life, but thankfully nothing she can't overcome. Tomorrow I will fly to get Zoe and Teddy and take them home. Daisy has an MRI scheduled and another blood draw, then we hope to get her home.