We are trying to spend as much time at the hospital as possible. It's getting increasingly more difficult to spend so much time there and then have to leave her there at the end of the evening. She hasn't had any episodes (that we count) in over 2 days. Tonight at 11 PM, it will tie her previous record of 2.5 days without a stop breathing (apneic) episode.
We spoke to a doctor today, who mentioned that Emily had an episode last night. This was news to us! The episode she was referring to was after Emily had eaten, she had a little bit of trouble with spit up, but nothing I would consider that abnormal. She burped and spit up. She never stopped breathing. She never turned blue. Her vital signs on her monitor never went down. But it sounds like they want to reset the "5-7 days without an episode timer" now. So they are saying it will possibly be the END of next week before we can bring her home and that's only if she doesn't have anymore episodes.
The doctor today mentioned doing a barium swallow test to see how she is swallowing and see if it actually is a type of reflux. I don't know too much about this test, but I had my reservations about unnecessarily exposing Emily to more radiation. So when I got home today, I did some research on barium swallow tests. Of course wikipedia was one of the first sources to pop up. This is what wikipedia said at the end of their entry on barium swallow tests: "As with all X-rays, the barium swallow technique employs radiation, and may irradiate the patient unnecessarily... it should be avoided as much as possible for children and pregnant women." I know that infants and young children are more sensitive to radiation than adults. She's already had one set of x-rays that yielded nothing. I'm concerned that this test may yield nothing also and she'll be exposed yet again to unnecessary radiation. We want to do what's best for our baby girl... but we also don't want her future health to be compromised either. I asked her nurse tonight if we could be consulted before they order the barium swallow test, and she said "of course". We then learned that the hospital was supposed to consult with us and ask our permission before each and every test, including the blood work and antibiotics. They did not. We would not have objected to any of the tests she has received thus far, but she was about to go get a CT scan one day last week and they weren't even going to ask us first. A CT scan has A LOT more radiation than an X-ray (studies have shown that infants exposed to a CT scan have a 1 in 200 chance of developing cancer later in life. Whereas if a 70 year old received the same level of radiation, their chance would be 1 in 10,000. I got two CT scans after my accident in 2008, and I wasn't thrilled about either one, but that's in the past now). Luckily I said something, and they opted to do an MRI instead (an MRI uses magnets, so there is a lot less radiation).
As for what's on the schedule for next week. They want to do the barium swallow test on Monday (unless we put a hold on that). They also need to order the take-home monitor and set up a time for the company to come by the hospital and show us how to use it at home. They also want us to "room in" the last night Emily's stays at the hospital. Basically they would put her in a hospital room with us, hooked up to the monitor and let us all sleep in the same room. That way if something happened, we'd have help close by.
She passed the "Car Seat Challenge" yesterday also. They had us bring our car seat in and she had to sit in it for 30 minutes without her vital signs dropping. They remained constant and she actually fell asleep. So that's a good sign. One less test to pass before we can go home.
Still a ways to go before we can bring her home, and even longer still until this is past us.
No comments:
Post a Comment