Ella's medical update

Unfortunately yesterday wasn't a very good day for Ella (or any of us, really). We took her in to a Children's Healthcare Center for her rescheduled MRI and she was fine in the morning, without any congestion like last time (they wouldn't even attempt to sedate her last time because she was too congested). The anesthesiologist checked over Ella and said she was good to go. The IV insertion went well - Ella was only upset they had to papoose/swaddle her to hold her still, but they got it in on the first try. We went into the MRI room and they gave her the sedation medicine. They only needed to give her a milder anesthetic just so she would sleep and be still. After she fell asleep her airway collapsed ("laryngospasm" apparently) and she wasn't breathing on her own, so they had to stop the meds and use the air mask with the big squeeze bag on it (a bag valve mask, I think) to force air into her off and on for 15-20 minutes until she came around. Both of us were in the room the whole time, and Ella was never in danger, but obviously they couldn't do the MRI since she couldn't breathe on her own for the 30 minutes it would take to get the images they needed.

After she woke up she was all drunk happy/giggly and took fluids fine (half a cup of juice and a bottle). We went home where she had a little bit to eat and took a nap in her room. She woke up around noon with a fever of 101.5, had a bottle and then threw up that and everything from earlier in the day. The remainder of the day was the same: she couldn't keep anything down and was very lethargic. She would only calm when being held and she just wanted to lay her head on your shoulder and sleep. Unfortunately that meant we got drenched every time she woke up and got sick. (Jamie got thrown up on at least 5 times, Julie once.) We're still not sure if it was a side effect of the sedation medicine (a nurse at Children's said nausea wasn't as common with this med), or a stomach bug. The fever isn't a side effect of the medicine, but a different nurse said if it was a stomach bug she would have "lower" stomach issues, which never happened.

She went to bed for the night (in a pack and play in our room) around 11 and slept until 8am. Thankfully today she is keeping everything down and acting happy. We have an appointment tomorrow for an airway fluoroscopy (basically a live/movie xray from our understanding) to figure out what is going on with her airway. Fortunately we already had that scheduled because of her "honking" noise she makes, and now it would seem the honking could be related to what happened when she was sedated. Another fortunate thing is that the fluoroscopy doesn't require sedation. They actually want her to cry during it, so they can see her airway movement.

The Children's center we were at reported what happened to her pediatrician, but it sounds like the pediatrician still wants us to get the MRI done instead of waiting to see what happens with her head size over time. After we get the results of the fluoroscopy, I think I want to talk to the pediatrician directly (instead of through the nurses), if for no other reason because I want to know the risks we are weighing against each other. At this point, it sounds like to get the MRI, Ella will have to be put under general anesthesia (which puts you under so much they have to put in breathing tubes anyway) - although who knows if that will change based on the fluoroscopy results. I'm not sure if they can counter the nausea if they know she is sensitive, but I doubt any of us want a repeat of yesterday afternoon.

A couple prayer requests would be that we can find out what is going on with Ella's throat/airway on Friday, and that everyone involved can make the best decisions for how to proceed with the MRI to check for hydrocephalus/"water on the brain," given everything that has happened so far. Thank you!

Here's the little patient in the waiting room, then getting blood pressure checked.

Ella came out of sedation very happy - apparently lots of kids cry and/or are angry about it, but she was just in a happy, drugged state as she woke up. Later at home, she spent much of the day sleeping while being held.