The One Where I Whine About The MBSS

What happened: Nurse J called me at 8:00 PM last night to break the bad news. She was sick, sick, sick. I guess it was just a matter of time, but she acquired whatever bug I had last week. Great! (insert sarcasm.) Today was a very big day for Austin, Nurse J felt bad and offered to come in for a few hours and wear a mask. I declined her offer. I tried to be positive about a day free of nurses, but apparently it was a bad Omen.

What does this mean: It means I am functioning on very little sleep today. You see, I am the night nurse. I rely on the day nurse to arrive by 6:00 AM and get Austin his medications & feeding while I try to catch a few Zzz's. During the night I can be up anywhere from a few minutes to a few hours, depending on how Austin is breathing etc. Luckily last night I was not too bad, while I was not UP all night, I was not sleeping either.

What happened next: I canceled his 10:00 AM appointment so he could nap early and make it to the hospital refreshed. (Big day, remember?) At 10:00 AM after his bath he was tired and yawning, just as I had planned. YAY! Nap time.

Bwwwwwwwwhahahaha...he refused to sleep. He rolled around his crib, sat up, stood up and generally just made a ruckus until 11:20 AM. Finally I had had enough and got him up and ready to go. I was hoping he would doze off on the way to the hospital and wake up refreshed. No dice.

So sans Nurse J, my mom & I schlepped Austin over to CHLA for his Cervical Spine x-rays and his Modified Barium Swallow Study (MBSS). The MBSS is needed to view his swallow under Fluoroscopy (Radiation). I was instructed not to feed Austin his regular feeding at 11:00 AM. I felt bad about starving him, but they needed him hungry so he would eat barium. YUM! (insert sarcasm.)



It worked out great as we did the x-rays at 12:30 PM, then my mom & I had a quick bite to eat in the Park Lobby. Austin was begging for food. Wonderful, the one time he wants to eat and he cant. We went back to Radiology for the MBSS at 1:00 PM. While we were waiting for the MBSS we ran into Kylee and her parents. It was a fun little impromptu P2P meet up. And just as I pulled my camera out to take a picture of Austin & Kylee together they came and called Austin to rush us back for the MBSS. Next time.

What happened after that: Once we got back to Fluoroscopy they suited us up with padding, sat Austin in the chair and we began. Well let's just say that the kid who was begging for food suddenly was not hungry, but rather ANGRY. Very, very angry! No sleep, no food. Oh Joy!



After refusing to eat ANY solids he did choke down between sobs agree to take some juice. We started with Honey thickened juice, he did a few good swallows. Then we moved to Nectar thickened juice. The place came alive. After a few sips we were instructed to go back to Honey thickened juice.

NO!!!!!! Wrong direction.

More Honey thickened juice, a few more swats of the spoon with food on it. I offered a Graham cracker, he took it. Then he realized...hey, wait what is the gooey white stuff. More crying, more swats. MBSS over.

What does this mean: We are EXACTLY back where we started 14 months ago. His last MBSS was May 2008 in Texas. From that study he was cleared to drink liquids ONLY in Honey consistency and puddings or purees. This time we never even got to the food, but they still believe he is clear because purees are thicker than Honey. Honey is safe.

His Speech Language Pathologist, KP, who oversaw today's study will recommend that we repeat the study in 3 months.

What happened next: We drove 40 minutes home. Austin fell asleep as we drove into the driveway @ 2:30PM.

What does this mean: He will sleep until 5:00PM~ish. Instead of going to bed @ 7:00PM he will be up until about 9:00PM. Oh Joy! I need a nap.

What happens tomorrow: A NEW nurse starts tomorrow at 6:00 AM.

What does this mean: I get to be "on-call" tonight again. And then, I get to wake up with Austin @ 6:00 AM again. Why? Because a new nurse means more crying and more swatting.

Get Well Nurse J. We need you back on Wednesday!!!!


5:00 PM ETA: The NEW nurse called out for tomorrow....Stay tuned to see what happens. Not really a teaser. I have NO idea if Nurse J is better yet, so I might fly solo tomorrow too.


7:19 PM ETA (Again): The NEW Nurse got FIRED! Whoops! They called to say she would not be back at all. Just glad I did not have to deal with any incompetence myself. So I am definitely flying solo again tomorrow. Nurse J is still down for the count.


Thanks for peeking,