The roller coaster continues.
Julianna has a tricky stomach. It’s the best way I know to describe it, because there’s really no medical terminology or explanation for the retching that has plagued us.
We took J home on Thursday. On Friday, she woke up and her stomach was not happy. She needed suction every minute and felt the urge to throw up almost constantly. It took three people to tend to her needs.
On Friday afternoon, it finally happened. She retched and aspirated – badly.
I have seen my daughter struggle to breathe many times, and it never gets any easier.
Through it all, Julianna was Julianna: brave, insightful, a great communicator.
J: Why did this day have to come? This isn’t enough to bring me to the hospital.
M: No – we’re not going back. No hospital.
J: And no NT.
M: I promise. No NT suction ever again. (NT=naso-tracheal suction – going through the nose to suction the throat and trachea)
J: nods. Can you put Cinderella’s carriage on my table? (J got lots of toy rewards for her hospital ordeal. She likes to make sure that her new toys feel welcome. She wasn’t about to let us to put them just anywhere.)
We got her through this mini-emergency, but the rest of Friday and most of Saturday was dicey. She slept restlessly. She needed a lot of oxygen, and her heart rate told me that she wasn’t comfortable. She went through periods of needing constant suction. She had a few more retching episodes, but luckily we were able to catch them in time so that there were no more aspirations.
And Julianna was still Julianna.
J: Mom, why did you cry yesterday? (Like I said, it’s not easy to watch your child struggle for breath.)
M: I just couldn’t help it, Julianna. I’m sorry.
J: Why did you look up?
M: I don’t know – it just ended up that way.
J: Were you looking to heaven and God?
Her bravery brings me to tears, but her spirit makes me laugh. After another dramatic retching episode, three of us stood around her bed, relieved to have dodged another aspiration.
J: Well, don’t just stand there looking at me!
On Saturday, J fell asleep before 7PM. I can’t remember the last time this happened, and I braced myself for a 2A wakeup.
It didn’t happen. J slept – solidly and quietly – until 8:30 the next morning. She woke up and the old Julianna back. Her eyes were rested and sparkling. The constant need for suction and feeling that she was going to throw up was gone.
I can’t explain it. It’s another miracle. We’ve had so many.
My mantra these days is “happy and comfortable.” Julianna has been through too much. Whatever happens, I want her to be happy and comfortable. Tonight, she is both.
New day, new haircut. Everything is better today.