Day +87

Well Alicia had more fevers last night. I think I am either getting very frustrated or very tired but either way when the doctors get her in a little while they might not like what I have to say. I NEED answers.

My baby does not seem to be getting better. Now her HBG dropped from 10.1 to 7.3 over night. I made them repeat the CBC's twice this morning but they came back the same. I am so very worried about Alicia. She is getting so small. She weighed 13.7 kg when we were admitted 3 months ago and today she is at 11.9 kg, Her little legs are like sticks. I try to get her out of bed and make her walk everyday but when I miss a day due to fevers or infusions it sets her back so much.

She is so very weak. I am kind of relieved that they put her back on IV nutrition's even though I feel like I failed in getting her to eat. At least now I know she is getting what calories she needs through the day.

She is also off of all oral meds as of yesterday. This should give her tummy time to heal. It was so funny because Alicia kept telling me that it was time for her medicine yesterday. She did not understand when I told her it was going through her line and not her tube anymore. She always got to help push her meds in her tube and she couldn't or didn't want to understand why she wasn't doing it yesterday. So every time she kept telling me that she needed her medicine I told her NO that it was in her line and she would tell me No that I had to put it in her tube and once again I would tell her No so she would push the nurse's button. I kept laughing but Alicia was getting very mad. She even told the Nurse she had to NOW cause the doctor said so. After about the tenth time she pushed the button I finally had to get stern with her cause I am sure the nurse at the desk was getting irritated. ( O well)

I feel like I am about to lose it some days. I am sooooooo glad her Mommy will be here soon and my sister Denise will be back as soon as she recovers from the surgery she is having tomorrow. That is also on my mind, I am worried for her. As soon as she recovers she is coming here for a full week. She is such a huge help.

Well the doctors are here so I will be right back with news hopefully...........