So, if you're not friends with me on Facebook, you may not know about our little trip to the ER on Wednesday. Yes, we were just discharged the day before...almost exactly 24 hours before we went back to JHH.
Abby tolerated her feeds all night (she is fed continuously at a slower rate) but couldn't handle her daytime feed--much more food in a small amount of time. She got sick three times in 5 minutes and it was bubbling out of the trach. After a call to our pediatrician, we were instructed to go back to the ER. Unfortunately, the ER doctor just kept saying, kids throw up. That's what they do! Yes, but kids do not throw up from their trach!!! She failed to see our (and our pediatrician's) concern. They ran all of the tests again to see if anything was missed. They attempted to start and IV, but couldn't get it. They drew blood, but it clotted. After an eight hour stay and a lot of arguing with the doctor, we were sent home. It was pretty much pointless, although we really feel like she should have been admitted. Our pediatrician did too, and said as much when we followed up with him the next day.
They still don't know what she has! They're calling it viral at this point, but we seriously doubt that it is viral because Abby was around a lot of people the few days before Christmas, and us every day...no one has gotten anything that are similar to her symptoms. I really think they're just saying that it is viral because they don't know what else it could be.
She got sick again today, so I called GI to see if they had any recommendations. The doctor was none too happy with the ER doctor that she was not consulted about Abby, and said that her rate should have been slowed way down when she first started to be sick. Now, Abby is only taking pedialyte at a very slow, continuous rate. She'll not go back to full feeds until Monday, at the earliest. The goal is to try to keep her from getting sick anymore. (In case you don't realize, throwing up is really dangerous for trach kids because they have a hole that leads right to their lungs. Vomit can get into the lungs and cause aspiration pnemonia very easily. You really want to avoid getting sick at all costs!)
We're also all worried about dehydration because there are other tummy issues going on that have resulted in numerous clothing changes each day! Her wet diapers have been minimal, but I'm hoping that this continuous feed of pedialyte will help. We are keeping an eye on it.
My poor girl seems fine when she isn't eating (regular feeds--pedialyte is fine), but she is absolutely miserable when she is getting sick. She fell asleep almost immediately after her stomach was emptied. So sad!
So the saga continues...just what does Abby have???? She'll have been symptomatic for a week tomorrow.