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.
thanks for the update. I will pray for continued health and some weight gain before the dr appt.
ReplyDeleteDo I ever remember this time! I will always remember how little BB would always look straight into the camera with those soulful eyes staring right at you. I remember how soundly Little G would sleep when reunited with BB in then same crib. And I remember Pink Hand and how much comfort she provided for BB - especially during those times we could not hold BB. I remember lots of nights in the hospital tucking BB in and snuggling Pink Hand into just the right position before I settled myself down to sleep. And I remember how happy I was when BB finally got to go home to be with both his brothers. And now BB still looks straight into that camera and blesses every single one of us with that loving, heartfelt smile that never fails to delight. Pop and I are blessed among grandparents to have those three boys to light up our lives
ReplyDeleteI will be praying for weight gain, Jennifer! Praise the Lord for the healthy last few weeks though:)
ReplyDeleteI'll be praying for aa good report on Tuesday . .as well as weight gain for Brett.
ReplyDeleteAnd I'm so happy you all have had this short reprieve from the hospital!