Crazy week

I am a little late in posting this. For some reason it can be difficult to update on time!  Two weeks ago Waverly got really sick with a respiratory bug on Sunday and Monday. She had a really high temperature and high respiration rate (over 70 breaths per minute!). We thankfully were able to get some meds started and antibiotics and she stabilized and we were able to keep her home. Within 24 hours, she was smiling while on the bipap. Silly girl!  

Then on Thursday afternoon, we noticed she had a blown pupil, in which her one pupil was dilated and non- reactive to light, while the other one was fine. Although she was acting fine, after much deliberation, we decided to take her in to get checked out and get a CT scan. I was honestly pretty scared because of the possibilities (doctors were saying things like brain bleed, brain herniation, and making preparations). 

Thankfully, her scans looked fine (for her...) and we think she may have gotten one of her nebulized medications in her eye, causing her pupil to dilate. They kept her overnight in the PICU to observe her and make sure though. 

Of course, when you hear things like the doctors were saying and wondering if "this was finally it", it was hard to process. I am thankful that we didn't get the bad news they were fearing and that we continue to get to enjoy time with our sweet girl. 

The Difference of a Day

On Sunday night Waverly started acting "off" for her. As I went to lay down for bed, I heard a different type of noise for her over the monitor. When I went in her room, she was breathing very fast (60-70 breaths per minute), grunting, heart rate was high, her skin was mottled, and her temperature was rising quickly. I gave her Motrin for her fever and tried to determine if she was seizing as well. I stopped her feed and took off her bipap in case she vomited (because she was acting like she might). And we rocked and prayed. Needless to say, I didn't sleep much that night. Her fever took a while to come down. The next morning, yesterday, she did ok for the first part of the day. But by the afternoon she started to go downhill again. We got her hospice nurse to come out too and got in touch with the doctors and put her on an antibiotic and have done what we can to keep her home. So far she's done better today. No temperature and breathing much better. She's been sleeping and on bipap most of the day. But we are giving her a break right now before bedtime. The first pic is her yesterday and the second one is her this evening. Thanks for praying for her and us during this latest sickness. We are thankful for the reprieve we got for the month of September.

It's just so hard....

...being this cute. 

Enough

Tonight I am grouchy. I've had enough. This poor child's bowel issues have gone on long enough. I just spent a good 5 minutes literally pulling chunks of stool out of her. And we've been doing this for almost two weeks now. I know it's got to be so uncomfortable for her. I'm mad that there isn't an answer why and we can't figure out something better to help her. I feel bad that I feel nauseous doing it when it's so painful for her to have to experience. I'm tired of it all. Yes, I'm venting. Will you please just pray that the right doctor would hear and help us figure this out?  Thankfully she's not miserable all day with it or anything. Just uncomfortable when we need to "check" and "help".