She has not really had much to drink since yesterday, which has made her output little to non-existent. Unfortunately, when Phoebe's system becomes overwhelmed and her body works overtime to try to fight viruses or bacteria, she goes into a "shut down". She doesn't drink and becomes dehydrated very quickly. This is something her team of doctors is aware of and something we are constantly fighting against.
I took Phoebe to a recheck at her pediatrician's office this morning and had the discussion with Phoebe that she needed to drink enough to pee by 4:00 pm. And that if she wasn't able to do so, we would need to go to the emergency room for IV fluids. Having gone through this for the past 5 years, Phoebe is well aware of these terms and what they mean. She agreed she would do her best to drink enough to use the bathroom. But once we got home, Phoebe was so worn down she would only take a few sips of water here and there, which is not enough to get what they doctor needed to keep her out of the ER. Her system was just too dry.
We had to go to the emergency room for fluids. After a rough and bumpy start with a resident in the ER (a doctor who was very dismissive and condescending about Phoebe's health), they started her on an IV bolus of normal saline to try to get fluids into her quickly. Being annoyed at the interactions with the resident and his lack of concern for my daughter, I mentioned my displeasure with the nurses and child life specialist. and sent an email to her immunologist - who would be getting a phone call regarding the ER's plan for Phoebe - regarding the interaction.
Within a half hour, the head of the ER was Phoebe's doctor. And he was amazing. He took her health history and current situation so seriously, and was so caring and attentive to Phoebe. It made all the difference in the world to have him as our doctor compared to the resident we initially encountered.
Her new doctor said she needed more than normal saline, so he ordered a piggy back (two medications hanging at once) of D5NS (dextrose 5% in normal saline) to infuse while the bolus of normal saline finished. The reason for adding this second bag was because since she was not drinking and barely eating she needed the second bag for calories and additional fluid. Once the normal saline finished infusing he kept her one the D5NS to make sure she was hydrated enough to send her home safely.
Almost 4 hours after leaving to go to the emergency room, Phoebe was asking for things to snack on and apple juice to drink. The head doctor felt it was safe enough to send her home with the orders of rest and fluids.
We are home now, curled up in bed watching Disney princess movies. Phoebe is still taking only sips of water here and there, but hopefully tomorrow she will be able to drink even more so we won't have to go back for more IV fluids.