NUTRITION & FEEDS

So prior to entering the hospital Maddie had her issues with eating, however we had her maintaining her weight all though we have known we need to get more into her(she just can't tolerate more). A normal day of eating for her would be 3-250ml feeds at a rate of 200 ml/hour. She would get these feeds with a 4 hour break in between. It has taken us 2 years to get her to that kind of volume and that schedule without having her throwup, and as previously mentioned we had her maintaining her weight for about the past 6 months which in our view is major progress. 100% of her feeds have been through a feed tube that was surgically placed directly to her belly when she was just a few weeks old. She basically has a button or port next to her belly button that has a tube going into her belly. We hook a line up to that button and in go her feeds. The problem with pushing more feeds this way is the risk of her refluxing and than aspirating (fluid or vomit in the lungs) which for her could be disasterous. during this stay they have inserted a new feed tube using the same port, however this one goes too her stomach as well as her small intestine. The idea or logic here is to bypass her stomach and feed directly to the small intestine thus eliminating any chance of reflux. This is not going so well foe her. So far they have only been able to get her up to 45 ml/hour but had to stop as she was in some obvious discomfort and couldn't even sleep. They have done what seems like a million tests from x-raying every bone in her body to a GI consultation to an orthopedic consultation to try and figure the source of her discomfort but to no avail. At one point we were actually hoping she had a broken bone or somthing since that can be fixed and we would know what's wrong. The thinking is that her intestine just needs to adjust to the direct feeds and it could take some time. Today she is up to 30 ml/hour, they actually dropped her down from 33ml/hour cause she started to get fussy within minutes of upping the volume.
As far as weening her off of the methadone and atovan (anti-anxiety), they have put that on hold so they can just concentrate on feeds. Fussing from the lack of one of those would just cause confusion when trying to figure out why she's uncomfortable.
GOOD NEWS is she is doing well on the regular nasal canula and is not far off from her O2 settings at home. A very good indication that her lungs have returned to her normal baseline.

On a side note, one of Maddie's Doctors used to live next door to my Gram Lippitt on Duerstein St. His name is Peter, however he went by PJ when we used to swim in Gram's pool together. What a small world. Anyhow, he and all the other Doctors have treated Maddie and us like there own family and have been relentless in trying to figure out what the heck is troubling Maddie. Some prayers for all of them would be greatly appreciated as well.

A thousand thanks again to all for your continued thoughts and prayers. We will keep you posted.

Thank you and God Bless
Ann, Rick & MADDIE