I just turned Summer's formula tube feeds up to 95 ML's per hour!!!!! I can't believe it happened (finally)...she is at her formula intake goal....every time she has gained weight or grown, the goal has been increased, sending it further and further out of reach, Summer finally caught up!...next step, drop the TPN :) Summer has been tolerating the formula increases (only 5 ML's every 4 weeks, though she was only on 90 for a week, before I bumped her up last night to 95, he he). She gained 4 grams per day as of last week's check-up and her nutritionist said if she was doing well, I could turn it up this week, so I did :) She has a clinic appt. next Tues., so if all goes well (keep your fingers crossed, prayers coming, rub those rabbit feet), we will reduce the TPN down even further.
I talked to one of the home care pharmacists yesterday...she called to tell me how excited she was that Summer is so close to dropping TPN. I asked her how fast weening usual goes once the formula goal is met...she said sometimes, if the labs are good, and the baby is very stable, they will just take the TPN away...no need to taper off! She did say, of course, this may not be the case for Summer, but I sure hope it is!
Wow, what a great Christmas present this would be!!!!
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Congratulations! What a great gift.
ReplyDeleteIf you need help or have questions about the tube feeding -- check out the Oley Foundation at www.oley.org. We offer free information and peer support for families dealing with home IV and tube feeding.
I also have an article I can send you on preventing dependency on tube feeding for kids like Summer. Email/call me if you are interested.
Finally, if you want to talk to other families in a similar situation -- I'm happy to help make connections.
Roslyn Dahl
Oley Foundation Staff Member
(800) 776-OLEY
dahlr@mail.amc.edu