Well here we go again. It's 6:30, Sunday evening and Maddie's feeds have been dropped down to 28ml/hour and is sitting at the same levels on her meds as she was when we posted on Friday.

For some reason it would appear that she just can't tolerate the feeds. We don't know if it's the rate at which they are being delivered or the fact that the feed just runs continuously and her body has been so used to rest. Remember prior to this visit she would rest 4 hours between each feed throughout the day and rest all throughout the night.

She began showing signs of discomfort on Saturday morning and progressively became worse upto and including now. She is miserable, easily aggitated and next to impossible to console. There have been some questions raised about maybe she is just sick of being in the hospital and needs to go home. As her parents we have seen Maddie mad and showing attitude and we wish that were the case here. She is in some kind of discomfort and we need to figure out what the source of that discomfort is. She actually gets worse when we hold her.There has also been the question of why not just feed her the way we were prior to the hospitalization and we have raised that question ourselves; however when a team of medical doctors including lung specialists and ICU specialists stand at your child's bedside and tell you that based on the condition she was in upon arrival that they fear if she refluxes or vomits it could enter her lungs and we could lose her, well it's quite simply a no brainer. A 1% chance of somthing of that magnitude happening is not a chance we are willing to take. We have seen her vomit just from trying to make a bowel movement.

So early this week is not looking as good as it was on Friday. Maddie will be having a cat scan in the morning to check for any kind of abnormality in her head that could have been caused from the time that she was in arrest. We are praying that is negative. After that, we're not sure there are any more tests that can be done.

Sorry for the bad news, please keep the prayers coming.

Thanks and God Bless
Ann, Rick and Maddie Moo