Stop the Ride, I Want to Get Off!

I sit here updating my little blog from a room in the PICU. We have been living here since last Saturday. One week in this little room. It's been quite the ride, and if you don't mind, I'd like to get off now.
Last Wednesday, Natalie had a bit of a cold. A little cough here and there, but nothing remarkable. I think on Thursday, I commented on Facebook that her breathing was off, but nothing too exciting, just fast breathing.
By Friday, I was calling the doctor, certain I would take her in and have them tell me it was a virus that had to run it's course. These things always happen on the weekend, so if something bad was going to happen, I needed to get into the doctor on Friday.
We went and the doctor was concerned about her mild retractions. She swabbed her for flu and RSV. The rapid test on both of those came back negative, but she had to send them off to grow more. She wasn't comfortable sending her home though, because of the retractions, and oh yes, the fever she now had. She wanted Nannie to go to the children's hospital for observation.
When we got there we were to check in through the emergency department. They didn't have a room for her, so we sat downstairs for two hours, waiting. During this time, Nan was up and down, acting pretty normal. The thought did go through my head that this was all ridiculous and total overkill.
We finally got into a room to wait through the night. Tylenol was given. Her retractions got worse and her O2 sats started to drop. I don't remember when, but at some point in the night, they started her on O2. They tried doing a breathing treatment, but that didn't help at all. In the middle of the night the resident called for another treatment, which also didn't help. We took her downstairs for a chest x-ray which revealed what they had suspected, bronchiolitis.
Through the night things worsened. At some point Saturday, they wanted another x-ray, only this time she wasn't well enough to go downstairs, they had to come to her. She went downhill that quick.
We were on an observation floor and the nurse was trying to get us into a room elsewhere because she needed more care. The residents were all dumb and no one wanted to take her. Our nurse felt she needed the PICU but they refused to take her. She was going downhill so rapidly that the nurse informed me of the response team they had there. She wanted me to know that she was right on the cusp of crashing, not a code blue, but she was certain she would be calling them to intubate her. She said you can only breathe so fast for so long before your body quits. Finally, they moved us to another room, on a regular pediatric floor.
Things continued to deteriorate. I was the only one who could see the monitors unless a nurse was physically in the room with us. We stayed on that floor for a matter of hours before they deemed her bad enough to go to the PICU. So, since Saturday, we've been here.
At first they didn't know what was wrong, but the slow test for RSV came back positive. It is a virus that just has to run it's course. By Sunday morning, her chest x-ray showed pneumonia as well.
They told me the peak of the illness was about 3-4 days. However, day after day, we saw no improvement.
She has been on high flow O2 since last Saturday night. Throughout the week they've tried to wean her, to no avail, and have in fact had to go up on the flow several times. Currently, she's on 3 liters at 50% flow.
She has developed horrible diarrhea. She did have an ND tube in, but it kept coming out so because of the dehydration from the diarrhea, she is back on IV fluids.
Yesterday, they tried to sedate her for an echo. They wanted to look at her heart just to see if anything was going on there to explain why this is taking so long. Let me tell you, she doesn't sedate well. They gave her full doses of three meds and she fought all of them. Finally, they gave up. She was soooo crabby yesterday, it was awful. It was like she would go to sleep, but her little body couldn't relax. Finally, they decided to sedate her using something that the doctor had to be present to administer. Even with that, when they pulled a sticker off her she woke up.
She has had a horrible week. Everything they do to her is so awful. They deep suction her by sending a tube up her nose down her throat and just sucking it all out. She has been on compression vest therapy where they just shake the daylights out of her to loosen the junk in her lungs. It's just been awful. She is so afraid when someone new enters the room, and it just breaks my heart.
As of yesterday, we seem to be making progress in the right direction. She went from 60% flow to 50% flow and it's just kind of a waiting game now.
When they rounded they said, "she's making progress, just slower than we'd expect, but at least she isn't backsliding".
At this point, I have no idea how much longer we'll be in the hospital. She has to be off the high flow to get out of the PICU. From there she'll spend some time on the regular pediatric floor, before being discharged.
Through all of this, I am so thankful that Matt is able to take time off to be home with the kids so I can stay with Nannie. I haven't left since Friday, but that's OK. I can't bear the thought of locking her up in the crib just so I can leave. I mean it's not like the nurses can stay with her and hold her. If she were sedated, that would be one thing, but since she's awake, nope...can't do it.
Anyway, that's where we are. Playing the waiting game. It's been a stressful ride, and I'd like to get off now!

Friday night, still in observation...I thought she looked so sick here..little did I know what was in store!

Getting sicker, I'm not sure what night this was..but she was one sick little girl.

Shaking her. This picture breaks my heart because her eyes are pleading with us to help her. I've seen that look too many times this week.

Cute dinosaur masks to nothing for 14 month olds!

This was last night....she hadn't slept all day, nor most of the night before. She's making up for it now though.

OH!!! And I forgot to mention...on Sunday, Emily and Zachy got fevers and started breathing poorly. Nan's nurse said Matt needed to take them to the ER. Thankfully, they were sent home on tylenol and fluids and are doing much better!