Well, That Was Fun.

Please note the heavy sarcasm in this post's title. The events I'm going to share with you were most certainly NOT fun.

Oh, where to begin...

Just a few days after my last post ("Lily Eats!"), Lily started acting sick. It was Good Friday, actually, she woke up and was cranky and rocking a lot, which she usually only does when she's tired. She also didn't have much for breakfast that morning, but sometimes that's just how she rolls. She had an eye appointment that morning so we had to get moving pretty quickly. She was more subdued than usual for the whole thing, and then fell asleep in the car afterwards (VERY unusual for her). At this point I wasn't too worried...

Then she slept until lunch. Then she slept through lunch without eating lunch. Then she slept all afternoon, all evening, and all night without eating anything since breakfast. I started to get worried about mid-afternoon. I decided to take her to the doctor the next morning.

So the next morning (Saturday) we got up...and she seemed a little better. She was more alert, ate a decent breakfast, and was playing a little bit. I decided to hold off on the doctor (a fact which I regret now!). She did ok until just after lunch, when she went down for a nap, and basically didn't wake up or eat for the rest of the day. She also had a cough and a low fever.

The next day was Easter, and I still didn't think she was ER-sick, so we went on with our plans but Lily slept the whole day and barely ate anything. Decided to see the doctor first thing Monday morning.

Monday, April 9, we saw the doctor in the morning. She listened to Lily's lungs and declared she had pneumonia without sending us to get an xray. Lily's O2 sats were low for her, never getting higher than 87% in the office, but the doctor wasn't sure that we were getting an accurate reading. She gave me the option of getting admitted to the hospital or coming back the next morning. After much consulting, we decided to come back that evening and in the meantime give Lily some nebulizer treatments at home.

That evening we went back, her cough was worse, her O2 sats were no better, and they decided to admit her. So Lily got her second ambulance ride. I must say that it was not nearly as cool as her first because we didn't get the cool pediatric transport unit, just a regular ol' ambulance :)

That was a looong night. After getting admitted, they couldn't get Lily's sats to stay above 90. Finally at 4am they transfered us to the PICU so that she could get more oxygen support. I think I got about one hour of sleep that night.

The next morning, Tuesday April 10, after a rough night

We learned on Tuesday that she did NOT, in fact, have pneumonia, as evidenced by a chest xray. She had bronchiolitis caused by a viral infection.

The morning of Wednesday, April 11

Except that on Wednesday, she developed a high fever and guess what? ALSO got pneumonia on TOP of the bronchiolitis. Sigh. They started her on antibiotics that day.

On Thursday morning, her sats were still not doing great, so they had to put her on a ventilator. She had to wear this bonnet to hold the mask tightly over her nose, and she was NOT a fan...

"I'm taking names..."

Poor little girl could NOT get comfortable with that mask on. She was so tired she would fall asleep sitting up (the only position she wanted to be in), and we put pillows around her to help prop her up:

"I'm tired and I know it..."

I think it was on Thursday that they also put an NG tube in to feed her because she wasn't eating much. And I don't think she was allowed to eat by mouth with the high amount of oxygen she was using.

Thursday night was the worst...she couldn't get comfortable. Finally around 3am I had the idea to strap her in a chair so she could sleep sitting up:

She had the Bipap mask on for two days. Finally on Saturday morning they took it off for a break, and that day she really turned a corner. She smiled and started playing for the first time in a week:

Saturday morning, April 14...playing!

The next few days were spent weaning her oxygen down enough to get out of the PICU. I think this picture was taken Sunday evening (all the days kind of blur together):

"Can I go home now?"

On Monday, April 16 we got to leave the PICU!!! Then we spent one more night on the regular floor before getting discharged on Tuesday, April 17.

"This new room is nice but I'm ready to be home..."

So that's what we've been up to. Lily is now officially diagnosed with Reactive Airway Disorder. She's using an inhaler twice per day now, and is back on Lasiks all to hopefully prevent this from EVER happening again.

Lily Eats!

Lily has had some break-throughs in eating lately. Over the weekend she ate about a quarter of an apple, pepperoni, ham and sausage pizza toppings. Tonight she ate hotdogs, mac & cheese, and raw broccoli for the first time. Here's a short video from her dinner tonight:

Lily has been home 9 months! I guess that's how long she needed to learn to eat solid foods :)