We just got home from a two day hospital stay with our daughter. Monday, was like any other day. I hooked Vivien up to her feeding pump and about 45ml into her feeding she began to strain as if trying to go to the bathroom. I looked down and her g-tube was full of what appeared to be yellow stomach bile. Not to be too alarmed I calmly turned off the pump and decided to wait a while to see how she acted before rushing to the doctor, she seemed to act normal at that moment. Within 20minutes she started gagging and retching (she's had a Nissen Fundo, so nothing came up), then she started acting lethargic and began to drool. I immediately rushed her to the local ER and they drew blood, took x-rays and decided to admit her.
I was told the x-ray looked normal, as if there was no blockage (something I was concerned with). However, her pediatrician looked at her at 8pm that night (after running a few errands before coming to check on her, but that is an entirely different matter, ugh!), he said she had a nasty ear infection, a throat full of puss and he believed the gagging and retching were due to a stomach virus.
He put her on Rocephin for two days and kept her w/o food overnight, the next morning started her on pedialyte, after 4 hours put her back on Neocate and she did well that evening, during the night he wanted us on our normal regimen and if doing well we would go home the next morning.
Well she did well and here we are home again. She seems to be doing great. However, no one in our family is sick. It seems as if she had a stomach virus, my other two kids would have it or we would be sick. I may be wrong, sometimes I don't know what to think anymore.
For the last month we have tried to have someone draw her blood and send it to Ambry, kid-you-not no one knows anything about it & every place we go to says they can't do it, b/c they've never heard of Ambry or they are not "contracted" with them, so they can't draw her blood. So I finally cornered the doctor yesterday before leaving & told him to do it. So, hopefully it was sent via mail today to Ambry (at least that's what I was told). Yet, he like many other doctors matter-of-factly told me he does not believe she has cf...if I hear that one more time I'm gonna go ballistic on someone, we can't say that until we know for sure. They all say they don't think it's CF, however, they also haven't a clue as to what's wrong with her or why she has had pneumonia 5 times in her 6month life & why her stools are not normal.
Thank you for sticking around long enough to read. I just wonder if the two days of Rocephin was part of what you all call a "tune-up"
We are scheduled to go see Dr. Zeitlin at John's Hopkins in January. Does anyone have any experiences with her or JH?
I was told the x-ray looked normal, as if there was no blockage (something I was concerned with). However, her pediatrician looked at her at 8pm that night (after running a few errands before coming to check on her, but that is an entirely different matter, ugh!), he said she had a nasty ear infection, a throat full of puss and he believed the gagging and retching were due to a stomach virus.
He put her on Rocephin for two days and kept her w/o food overnight, the next morning started her on pedialyte, after 4 hours put her back on Neocate and she did well that evening, during the night he wanted us on our normal regimen and if doing well we would go home the next morning.
Well she did well and here we are home again. She seems to be doing great. However, no one in our family is sick. It seems as if she had a stomach virus, my other two kids would have it or we would be sick. I may be wrong, sometimes I don't know what to think anymore.
For the last month we have tried to have someone draw her blood and send it to Ambry, kid-you-not no one knows anything about it & every place we go to says they can't do it, b/c they've never heard of Ambry or they are not "contracted" with them, so they can't draw her blood. So I finally cornered the doctor yesterday before leaving & told him to do it. So, hopefully it was sent via mail today to Ambry (at least that's what I was told). Yet, he like many other doctors matter-of-factly told me he does not believe she has cf...if I hear that one more time I'm gonna go ballistic on someone, we can't say that until we know for sure. They all say they don't think it's CF, however, they also haven't a clue as to what's wrong with her or why she has had pneumonia 5 times in her 6month life & why her stools are not normal.
Thank you for sticking around long enough to read. I just wonder if the two days of Rocephin was part of what you all call a "tune-up"
We are scheduled to go see Dr. Zeitlin at John's Hopkins in January. Does anyone have any experiences with her or JH?