Friday, March 6
I told Faith yesterday that it would be nice if she could just make it obvious if we were going to need to go to Boston or not... I said I wished if we were going to go, she'd just throw up or something so we'd know. Well, she listened to Mommy...
Yesterday I asked the docs on rounds if we could switch her back to oral Prevacid from the IV Protonix, since I had felt like that worked better for her. I didn't know it was going to be a gigantic dose (almost a full teaspoon)! We tried to give it last night, and she threw up about 20 cc of milk. (which shouldn't happen, considering her feeding tube is past her stomach...) Then around 2 AM, she threw up again... then this morning we tried to give her Prevacid again, and she threw up a bunch. This morning's throw-up didn't look like milk though... not sure if that's good or bad.
She's being fed at 15/hr right now, and I had asked that since we're going to Boston anyway, maybe they could just back off to 12, where she was tolerating it better with no throwing up... but they want to rule out that the Prevacid is causing it first, and confirm the placement of her tube, and just hold her at 15 and see what happens. We're going to try giving the Prevacid through her tube instead of by mouth, and hope that she tolerates it that way. (I had thought it had to go to her stomach to work.)
So we'll watch her for a day or two and see if she throws up more, and then maybe try to slowly increase her again. I told them I really don't care if she gets increased in feeds, because I don't think she'll get high enough anyway to get off the TPN, and that's what she'd have to do to rule out Boston. But it is important to try and get her feeds as high as we can, because the higher they are, the less damage is done to her liver, and since we don't know exactly how long it will take to get the Boston transfer organized, we need to do what we can to keep her liver fairly stable.
So it has become pretty apparent now that Boston is going to happen. (As long as the insurance approves it!) Please pray that the insurance approval process goes smoothly and quickly, with no denials, so we can get her to Boston, on the Omegaven, and start healing her liver!
I told Faith yesterday that it would be nice if she could just make it obvious if we were going to need to go to Boston or not... I said I wished if we were going to go, she'd just throw up or something so we'd know. Well, she listened to Mommy...
Yesterday I asked the docs on rounds if we could switch her back to oral Prevacid from the IV Protonix, since I had felt like that worked better for her. I didn't know it was going to be a gigantic dose (almost a full teaspoon)! We tried to give it last night, and she threw up about 20 cc of milk. (which shouldn't happen, considering her feeding tube is past her stomach...) Then around 2 AM, she threw up again... then this morning we tried to give her Prevacid again, and she threw up a bunch. This morning's throw-up didn't look like milk though... not sure if that's good or bad.
She's being fed at 15/hr right now, and I had asked that since we're going to Boston anyway, maybe they could just back off to 12, where she was tolerating it better with no throwing up... but they want to rule out that the Prevacid is causing it first, and confirm the placement of her tube, and just hold her at 15 and see what happens. We're going to try giving the Prevacid through her tube instead of by mouth, and hope that she tolerates it that way. (I had thought it had to go to her stomach to work.)
So we'll watch her for a day or two and see if she throws up more, and then maybe try to slowly increase her again. I told them I really don't care if she gets increased in feeds, because I don't think she'll get high enough anyway to get off the TPN, and that's what she'd have to do to rule out Boston. But it is important to try and get her feeds as high as we can, because the higher they are, the less damage is done to her liver, and since we don't know exactly how long it will take to get the Boston transfer organized, we need to do what we can to keep her liver fairly stable.
So it has become pretty apparent now that Boston is going to happen. (As long as the insurance approves it!) Please pray that the insurance approval process goes smoothly and quickly, with no denials, so we can get her to Boston, on the Omegaven, and start healing her liver!
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4 comments:
Your little girl is a cutie!! I really pray you are able to go to Boston and get on the Omegaven. We are starting Gavin here at A.I. duPont in DE on the "white gold" this coming week -- we are very excited!
Faith is so cute!! Good luck with the insurance, and let us know when you get here we would love to meet you.
Abby, Gib and Ellie Brogan
eleanorbrogan.blogspot.comn
What an angel! I will pray for insurance coverage.
I found you blog via your posts on MDC and have been following Faith's story. I just wanted to let you know that if you do end up in Boston, I live just outside the city and would be more than willing to help out with anything you might need. I'm currently a biology grad student and don't have any kids of my own yet, but I babysit for several families and I love cooking, so I'm always good for home-cooked organic meals & treats.
My brother had to travel to Boston Children's as a teen for surgery and some local families were really great to him & my mom while they were in a new city on their own...I'd love to pass that on. Shoot me an email if you need anything (jessica.brubaker@gmail.com). Best of luck!!
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