Thursday, February 26
Well, we tried to give Faith a bottle earlier today. (Actually, Maree tried last night, Jan tried this morning at 9, and then I did at 11.) Faith threw up in the night/early morning and threw up her feeding tube, so they took it out and replaced it, but just to her stomach. It only took until the bottle I gave her at 11 (and the resulting huge throw-up and having her throw up her feeding tube again) for us to realize that feeding to her stomach just isn't going to happen right now. Even if she could eat orally, she doesn't remember how to eat from a bottle anymore. She still has the desire to have things orally, but doesn't remember how to suck right, and mostly just plays with the bottle.
So, they took her back down to fleuroscopy to have the tube placed transpylorically again; now it is 8 cm past the pylorus. She is being fed continuously at a rate of 5 mL/hr right now, and they are going to try and raise it by 1 mL/hr two times a day... if she tolerates it. Her goal for full feeds is 27 mL/hr. Her reflux seems to be worse again, they are going to add the Zantac back into her TPN, in addition to the Protonix and Reglan she is already on.
We need all the prayers and positive thoughts everyone has to spare right now. If they aren't able to get her up to full feeds and off the TPN, there really aren't a whole lot of other options and that awful "T" word will be brought up again much more seriously, and we will have to probably go to another hospital, probably either Omaha or Boston, depending where we will be more likely to be able to get her on Omegaven and hopefully save her liver.
On a slightly more positive note, Faith seems completely oblivious of everything. She has been so happy the past few days, just smiling and laughing at everything. I hope to have more smile pictures to post soon, although she seems to know what the camera's for and stops smiling and just stares at it as soon as I get it out...
Well, we tried to give Faith a bottle earlier today. (Actually, Maree tried last night, Jan tried this morning at 9, and then I did at 11.) Faith threw up in the night/early morning and threw up her feeding tube, so they took it out and replaced it, but just to her stomach. It only took until the bottle I gave her at 11 (and the resulting huge throw-up and having her throw up her feeding tube again) for us to realize that feeding to her stomach just isn't going to happen right now. Even if she could eat orally, she doesn't remember how to eat from a bottle anymore. She still has the desire to have things orally, but doesn't remember how to suck right, and mostly just plays with the bottle.
So, they took her back down to fleuroscopy to have the tube placed transpylorically again; now it is 8 cm past the pylorus. She is being fed continuously at a rate of 5 mL/hr right now, and they are going to try and raise it by 1 mL/hr two times a day... if she tolerates it. Her goal for full feeds is 27 mL/hr. Her reflux seems to be worse again, they are going to add the Zantac back into her TPN, in addition to the Protonix and Reglan she is already on.
We need all the prayers and positive thoughts everyone has to spare right now. If they aren't able to get her up to full feeds and off the TPN, there really aren't a whole lot of other options and that awful "T" word will be brought up again much more seriously, and we will have to probably go to another hospital, probably either Omaha or Boston, depending where we will be more likely to be able to get her on Omegaven and hopefully save her liver.
On a slightly more positive note, Faith seems completely oblivious of everything. She has been so happy the past few days, just smiling and laughing at everything. I hope to have more smile pictures to post soon, although she seems to know what the camera's for and stops smiling and just stares at it as soon as I get it out...
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