Where do I start? As I mentioned earlier, today was a rough day for Gracie. Her heart rate has been high all day and even got into the "200 teens," she had a high fever and just seemed inconsolable unless she was in some one's arms being rocked and bounced. The cultures drawn a couple days ago showed that she had a urinary tract infection, so the doctors decided to send another culture to verify it--but started her on antibiotics anyway.
The cardiologist that did the echo last night thought that her leaking valve was leaking more than it was on Tuesday's echo--but he didn't know for sure; this is why her milirone was increased. The also increased her high flow to 5--she has never been on it that high (I think this is what added to her agitation, its like a wind storm in your nostrils). They also increased both her adavan and methadone because of her extreme agitation.
Despite all the changes nothing seemed to take away what has bugging her--she wasn't sleeping soundly and her heart rate was still higher than we would want it. Around 7:30pm, Gracie was still fussy and no matter what way I held her, bounced her, or rocked her nothing helped. I looked down and noticed that her feeding tube had grown...somehow it got pulled out and we suspected it was no longer in her intestines like it should be. The nurse turned off Grace's feeds and waited for the doctor to come by and within 15 minutes of her feeds being off and me patting her belly nonstop she was able to relax. Gracie was so relaxed that she just stared at me for 45 minutes straight--she was so close to smiling, it was as if she was teasing me. The corners of her mouth would turn up just a bit and then she would open her mouth or something...but I think her first social smile is coming.
Anyways the feeding tube was indeed pulled out, the nurse said it probably was in her esophagus. No wonder she was so upset--her tummy isn't use to having food in it, let alone 23cc an hour for who knows how long. Hopefully now she can rest easily and get the rest she needs.
Thank you for your thoughts and prayers.