Eliza is home from NYH and is back to her old self after her endoscopy. I think waking her up at 6 a.m. was possibly the most traumatic part of her day (it is an ill-kept secret that Eliza is up until 10 p.m. and sleeps until 8:30 a.m.). The staff at NYH are really quite good when it comes to these things. There is a Child Life Therapist in the waiting room to keep the kids entertained and the waiting time was pretty minimal.
The endoscopy revealed a perfectly normal healthy esophagus, stomach and duodenum. The biopsy results will be in on Friday or Monday, although Dr. R. said he would be surprised if there was anything awry there. As a "bonus" the anesthesiologist said her trachea looked great for a kid who was on a vent for two months.
So where does this good news leave us? Who knows. Eliza last ate at 8 p.m. yesterday and has only had one ounce of Resource JFK with oatmeal since she was allowed to eat a few hours ago. She is not acting hungry and is pushing away the bottle and spoon as usual. If the problem is purely behavioral then we'll have to move on to a more intensive feeding therapy. I suspect after seeing Eliza rip out her IV today, which had to hurt, Dr. R. may realize that trying an NG tube is an exercise in futility since I am doubtful there is enough surgical tape on the east coast to keep a feeding tube in Eliza's nose for more than five minutes.
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I'm so glad that Eliza did well with the scope. It sure sounds like she's back to her old self already. Do remember that most kids after being intubated have a bit of a sore throat for a couple of days and usually their eating/drinking goes down. I hope she's back to her 2+ ounce bottles soon!
ReplyDeleteGlad to hear she still has her spunk!
ReplyDeletePS: I tagged you for a meme on my blog.
I'm glad that Eliza did so well with the scope, and hope things have gotten a bit back to normal (whatever the heck that is) in terms of her eating. Though better than normal (let's hear it for 3 ounce bottles!) would be a nice step in the right direction.
ReplyDeleteA couple of thoughts:
What are the chances that she just hates the way that RJFK tastes? I know that this is perhaps a longshot...
And whatever did happen in terms of the delayed gastric emptying issue?
Abby,
ReplyDeleteI've tried to switch Eliza to various flavors of Pediasure, even the god awful banana but with the same results. I even tried good old Neosure to see if she liked that. Last night in 2 feeds in the middle of the night she drank 4 ounces each of JFK with oatmeal (a miracle) but was back to one ounce by this morning.
The doctor said he saw absloutely no sign of DGE and that you wouldn't even know she had reflux since everything looked so good. he doubts that the biopsies will reveal anything. I suspect all of this behavioral which means endless more months of feeding therapy and a few weeks at Blythedale or St. Mary's. The problem in the merantime will be getting addiitonal calories into her so that her development isn't impaired and there seems to be only one way to do that. Oye.
Hey Anne,
ReplyDeleteIs it worth giving St. Joseph's a call? We really like Dr. Eicher there and it might be worth a try. Their approach is behavioral, but only after they figure out for sure if there is any kind of physiological reason why the baby or child doesn't eat. We're pretty happy with them, if only because they don't under-prescribe reflux meds.
For what it's worth, Hallie had no evidence of allergic reactions or GI damage when they scoped her this summer. This is a good thing for both of our kids, but it doesn't translate into no reflux or no DGE. Just no damage.
That said, I am sadly in agreement that there really may only be one way to get her to gain weight quickly. And that does not mean that down the road that Eliza won't be able to eat by mouth---back a few months ago I was an avid collector of bloglinks of kids who once had G-tubes and who had been weaned. Laura -- who is also a NICU nurse as well as an adoptive mom to a 24 weeker -- over at Adventures in Juggling would be a great resource on this issue: Daniel, I think, is pretty much weaned from his g-tube but really needed it back in the day.
Thanks for the support Abby. I've spoken to a few parents in a support group here whose kids have g-tubes and they were really helpful with a lot of good information. Since next week is a bit of non-existent week we'll muddle through until after T-day.
ReplyDeleteEliza's current feeding therapist has suggested we meet with someone else that she knows at NYU who by all accounts from other parents I have spoken to is pretty well respected. I will also start looking into St. Mary's here. It has a very good reputation and the parents I spoke with were pretty pleased with their experience. I will keep St. Joe's as an option but really don't know how I could do that and still stay employed. At least St. Mary's is somewhat close that on the days I have to work I could have Eliza's nanny or my Mom take a car service with her out to Queens. Or maybe I'll win the lottery and be able to forget work until Eliza decides a cheeseburger is a good idea!