Day 6

Addy and I had a rough night! I had just gotten her to sleep and in her crib and the PCA wanted to weigh her. I said no that I had just gotten her to sleep. So she said to let her know when she woke up. She was good and sound asleep and it was time to hook up her IV antibiotics :( Fortunately the nurse was awesome and was able to hook her up without waking her! However, it was also time for her Zantac and we managed to make her stir a bit :( Well, Ms. PCA heard she was "awake" and came in to weigh her. She barely stirred! Well, that was enough to have me undress her and wake her all the way up to get her weighed! I feel bad that I really wasn't very nice about it but that drives me crazy! Let a little one sleep so they can get better! It took a couple of hours to get her back to sleep after that and it only lasted 30 minutes :( her pulse ox came off of her toe and the night nurse came to check on her and felt to talk in his everyday voice so she was really up again. He then asked "so her Downs is severe?". I was too tired to spew out my speech about the subject so I just gave him a very adamant "NO"! Addy wanted nothing to do with going back to sleep so we I pulled her into my bed but she just could not get comfortable. So we tossed and turned for quite awhile before we both drifted off to sleep. We were woken up at 4 for vitals and CPT. I had to go to the bathroom so I put Addy in her crib and got a very sad little face :( Once I came out she was back to sleep though :) So we got to sleep until about 7 so not a horrible night but definitely not the best!

She had a good morning but she is drooling like crazy due to this whole tongue issue we have going on! I have been cleaning her mouth like crazy (pulling off the dried crustiness) so it is MUCH better today! I really think once that cannula is gone she will pull her tongue back in. When she's asleep it's right where it should be :)

My mom called and wanted to do something to help so I sent her on a mission to find some pajamas that were short sleeved (to go over her IV) with long pants since we are going through 4-5 shirts in one afternoon! She showed up with 5 new jammies for the darling girl. Grandmama's got style! A friend of mine from our Down syndrome group came for a visit too so it was a nice morning.

We were sent to Radiology for a repeat chest x-ray. It didn't show any improvement :( Her left lung has more pneumonia than the right so the doc ordered the vest things to rattle those lungs. About two this afternoon I turned off all of the lights to attempt to get Addy to nap. Our nurse wanted to try to lower her O2 levels once she was asleep to see how she would do. She finally fell asleep all over my left arm :) I told her to take a nap and she signed "no mommy sleep" lol. Stinker! The nurse came in to lower her O2 and saw that she was on a new regulator and was at 1/5 of a liter and we didn't know it (the RT had changed it)! She had been doing just fine too! So she pushed her down to 1/10 and was doing really well. A little later she went to 1/20 and that's where she is right now! Woo hoo! She had one "massager" treatment before I left. She didn't care for it too much! Scott just texted me to let me know that she has a new pulse ox probe and is satting 96-97!!! YEAH! If we can get this girl off of O2 we will get our walking papers! Hoping for tomorrow but planning for Monday :) Scott took the night shift tonight and will stay with her through Monday if needed, I have got to work Monday, so many things to do! Not to mention the fact that thanks to my tonsillectomy I have NO sick days so I am being docked for all days missed :( 3 days last week, not going to love my paycheck this month :( big OUCH!