We made it home yesterday after only 1 day in the PICU. This was the shortest stay ever. We fought most of this one at home and had made it 5 days before going in. Brynlee gave us a couple of good scares on this one though. We camped out in our living room so we could get up every three hours to do her treatments. Needless to say we were pretty tired this week.
Thursday morning during her 6 am treatment she decided to desat. She sats made it all the way down to 30. Normal for Brynlee is 98. She started to turn a little blue but we suctioned her and got a lot of stuff out and she came back up pretty quickly. Later that day at 3:30 while I was doing a treatment she started getting angry. When she is sick she hates her treatments. Mark was at work so it was just Brynlee and I. My friend Danny was on her way over to help me out and was about 20 min away. Brynlee got mad and started desating really fast. She went from Blue to white in a matter of seconds. Her oxygen sats went clear down to 2 for about 4 min. I was trying to get her to breath and on the phone with 911, yelling at the guy to tell me how to do CPR. When stuff like that happens everything you know goes out the window. He was taking to long telling me what to do so I just grabbed her cough assist and started coughing and suctioning her. she finally opened her eyes a little a second before the cop got here. I was putting her Bi Pap back on when the paramedics got to our house. Brynlee was still just barely opening her eyes. By then her oxygen was up to about 90 with 5 liters bled in. I asked them how long what happens if someone is out that long and they said between four to six minutes, someone can become brain dead. I started freaking out. They asked me if I wanted to take her in and I said Brynlee do you want to go the the doctor thinking she wouldn't answer me. Her eyes popped open and she shook her head no.
The cop was flabbergasted and said is she responding to you? I have never been so happy in my life! My daughter rocks! Then Brynlee lifted up her hand and pointed at me and said "momma". Have I told you how much my daughter rocks yet?! They then asked me again if I wanted to take her in and I told them I wanted to do another treatment and see what she would do. They waited while I did a treatment and after I was done her sats came up. I had the cop drop her oxygen down and told them we would be ok. They left and not long after Brynlee was sating great on only 1 liter.
6 am the next morning she did the same thing. Mark was with me this time though thankfully so he made the call to 911 while I was trying to keep her going. We went through the same scenario and sent them on there way. After an hour though she wasn't coming up and she was on 5 liters. So we called them back for a ride up to primary's.
When we got to the hospital the RT did her treatment and she started to do the same thing again. He said that he thought she was doing it on purpose. We had also forgot to fill up her humidifier for about 2 days so that might have played into it also. So now we get to deal with her getting mad and doing this every time she is sick. So we are home after one day in there and she is almost over this one. Hopefully by Tuesday she will be her cheerful happy little self. I am just grateful she is still her with us. It just reminds me how fragile she really is. I don't aprecciate the reminder though and I hope Brynlee got the memo that when she does that kind of stuff she has to go to the doctor!