Remember this?
There have been no complications since the surgery to place the port-a-cath, and the incision is healing nicely. Although his bronchial cultures did grow staph aureus, they did NOT grow pseudomonas, so that means we do not have to do TOBI this month. (TOBI is the one that takes an extra half hour morning and night.)Yay!!
Unfortunately, Brett has continued to lose weight steadily here for the past 6-8 weeks. We have increased his feed as far as you can pretty much go for someone his size, and the minimum is 20 hours a day. If we can do 22 or as close to 24 as possible, it's even better. We have also changed his enzymes from Creon to Zenpep. This is an effort to promote weight gain before he has to go on IV nutrition supplements (which we want to avoid).
Brett has been free from IV nutrition since August of 2009, and we don't want to go back there unless we absolutely must. It kept him alive and growing when he couldn't feed, but it's also bad for your organs, particularly the liver. If you've been following for a long time and you remember those days when he was really jaundiced - even the whites of his eyes were yellow - those were the side effects of the TPN (total parenteral nutrition). It's also not the kind of jaundice that phototherapy helps - it's affects the bilirubin indirectly.
Anyway, the main point is that he desperately needs to put on more weight. Please pray for that! We go back next Tuesday for his next IgG infusion and will discuss the next step then.
