Squeak, Crackle, Gurgle

UPDATED:

We made it through the night at home. I ended up doing a neb and a bunch of BD's (pummeling over the lobes of her lungs), especially on the left side, where her lung sounds were diminished. She slept through the whole thing. Actually, the night went very well. I stayed in her room with her last night, and not even once did I have to silence the pulse ox!! So, I was able to get a few, consecutive hours of sleep last night, thank goodness. And, thank God Lily had such a great night! She is currently holding steady on about 3.5L of oxygen, and her sats are mid 90's. We finished another neb a little bit ago. I may try to wean down on the O2, if she continues doing well. Thank you for all of your thoughts and prayers!

ORIGINAL POST:

Lily is sick again. She's been fighting something for at least 3 weeks now, just a runny nose and some noisy lungs, but nothing too serious. At the end of last week, we had a few mornings where she woke up coughing and coughing until she threw up. On Friday afternoon, while the girls and I were at Target, Elise said she had a runny nose.

It didn't hit me until later. Lily likely added a new bug on top of the old one.

So the runny nose has been a sieve all week. The coughing and coarse lung sounds have increased. I've been doing nebs (Xoponex & Pulmicort) more frequently than just twice a day.

Yesterday, we went to the cardiologist, and that's when I noticed Lily was starting to get worse. Her lungs sounded coarse: crackly, gurgly, squeaky, pretty much all the time, even after the nebs. They even had a bit of a tough time getting good readings on her EKG and Echo! The good news is that Lily's heart looks fantastic. Her aortic arch is growing as she grows, which is exactly what we want it to do. At the time of her initial repair, her aorta was 2mm (the size of a cocktail straw). It's now 8mm! The sub-aortic membrane isn't causing any problems and is unchanged from 2 years ago. While Lily's mitral valve definitely is not normal, it functions normally, so that's all great news!

Last night, after Lily's evening neb, I decided to spot check her O2 sats. The reading was only 92-93, so I decided to leave her on the pulse ox for the night. An hour and a half later, she was dipping into the upper 80's consistently, so I fired up the oxygen concentrator. She spent most of the night and today between 2 & 4 L. There were a few hours in room air today, but Lily spent most of the day on O2.

She is now on 5L, which is the maximum I can give with the concentrator, and her sats are low to mid 90's. Not great, but not ghastly either. Currently, I'm trying to decide if I should just hold off and see how the next few hours go, or if I should just take her in. It's a tough call. She has no retractions, is not obviously struggling, which leads me to believe this could be a mucous plug issue, and those I can deal with. They aren't fun, but I can handle them. On the other hand, she did have diminished breath sounds in her left lower lobe tonight..... I've seen her sicker, and I've managed things when they've been worse, so I know I can handle it; the question now is whether or not it would be easier on Lily to just go in or to be at home. And, that's a question, I don't have the answer for yet.