This is a chronicle our everyday life as we live, laugh and love raising our teenager, our toddler and our special needs baby. Normal isn't always what it seems...

Sunday, March 11, 2012

03/02/12 Admission--Update #2

It is nearly midnight but I am trying my best to keep things updated for those that are keeping up Lydon. We have not gained any ground with his tube feedings. We've not even been able to make it up to half of our regular rate and that's just Pedialyte not his usual formula. His stomach just keeps putting out more than what we are able to put in. So, we are obviously still on the TPN (Total Parental Nutrition). TPN is basically total nutrition that is infused through his central line. We are trying very hard to make progress with the tube feedings. We are going back and forth with turning the Pedialyte off and on and turning the rate up and down. We do NOT want to go home on TPN. TPN is very hard on your liver and Lydon's liver enzymes have been climbing steadily over the last year anyway. Hopefully things turn around with this issue really really soon! Our GI doc is trying to arrange things with one of the GI docs at Texas Childrens to get Lydon in to do a manometry test. This would tell us what Lydon GI issues stem from whether it be gastric emptying, intestinal motility or nerve issues. I wish this would happen sooner than later but it will probably be at least a month before we get in. As far as the trachea infection goes, Lydon seems to be doing well airway wise. However, his culture did grow Psuedomonas. YUCK!! As if that wasnt enough, it also started growing Staph just two nights ago. So, we are definitely staying here on IV antibiotics for that issue alone for another 4-5 days. We enjoyed a lot of visitors this weekend. It definitely helped break up the long days. I will try to update again tomorrow after we talk to all of the docs again.

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