Winds of Change

I’ve been around hospitals long enough to know that circumstances can turn on a dime. Thankfully, circumstances usually change in our favor. This was not the case today.

Lily had been working pretty hard to breathe since the time she woke up this morning. Respiratory rate was elevated, she was having excessive coughing spells, and we were seeing more retracting (pulling/sucking in during breathing).

As I’ve said before, RR in the 60’s don’t really concern me too much because I’ve seen her rate double that before! Abdominal breathing isn’t new to us, and neither are coarse lung sounds. What I don’t like to hear are diminished lung sounds. It means parts of her lungs have to make up the difference for the parts that aren’t working as well. Another thing I don’t like to see is Lily being so worn out that she isn’t interested in watching movies, coloring, or anything else.

Here is the lowdown…

Lily moved back down to the PICU this afternoon. During the overnight on Saturday/Sunday, she had several coughing jags, where she’d just cough and cough and cough (like I’ve seen her do). Unfortunately, coughing is a lot of work. Epi nebs seemed to help her settle down.

During the morning hours, Lily’s cough was less “barky.” She had a few coughing jags, but mostly she was just so tired. So, we watched and waited to see how she was going to do.

While Lily was napping this afternoon, I noticed she really seemed to be “working,” and I decided to listen to her. Lung sounds were diminished to absent in both lower lobes. Combined with everything else, and the fact that she was so tired and only wanted to sleep the entire day, I was pretty worried that she would poop out.

I let the nurse know, and she contacted the pulmonologist who immediately told us to take her to PI[CU].

Lily was understandably freaked out with the moving. She kept asking for me to make sure I was nearby. When we got to the unit, she said, “I want you. Don’t leave me mommy.” I reassured her several times that I wouldn’t leave her. Mark called right before we left the room, and I basically told him we were heading to PI. He asked if he should come, and I said, “Yes,” and hung up.

We got Lily settled in, her nurse kicked the 100s of people out of the room (seriously, there were probably 10 people in there….imagine how that feels when you’re 5 to have all those people in gowns and masks looking at you and talking about you….someone even made some comment questioning whether this was a full moon. I said, “I hope not.” Inappropriate in front of family. It was shortly after that when the nurse kicked everyone out.)

And, it happened. Lily got some very therapeutic rest. When she woke up, Daddy and Grandpa were there. Grandpa told her about how he’d been coloring, playing with play-doh, and putting doll clothes on dolls. Lily giggled several times, and asked for crayons so she could color! That was the first time I’ve really seen her perk up since we’ve been here!

She colored, watched Cinderella, then the Tinkerbell movie. Towards the end, she was pretty tired and hungry. Her tummy is sore, which is probably partly from the vest pummeling her ribs and abdominal area, partly because she hasn’t stooled in a few days, and partly because Tamiflu can be hard on the gut. Could be one, two, or all of the above.

I am in a sleep room upstairs right now, and the nurse will call me when it’s time for Lily’s next vest treatment. I just know Lily will want me.

Prayers are still needed and very appreciated. This H1N1 is some scary shhh---stuff! Even the nurses and doctors are still learning about the best ways to treat it. Plus, it’s a virus, and viruses can take 7-10 days to run their course. We’ve just finished up Day 4.

I hope and pray Lily turns the corner to recovery very soon. She’s on 90% O2 and 9 L of flow through her MR-850. The next step would be Bi-Pap with a mask. She still has a lot of retractions, but overall she seems more comfortable than she did earlier. She’s just not coughing as much out right now, and that concerns me. Better out than in.

Thank you to my special friends Amy and Kathy for coming to see me, bringing me soup and bread, essential oils and cookies, and for letting me cry on your shoulders. Today was a hard day, and I needed that. I also really needed to see Lily perk up, so it was therapeutic for me too!

Praying for a good night, and for the peace of God that passes all understanding to wash over me.