Get this thing outta me!!

We had another interesting evening here in Philadelphia. Unfortunately Aurelia's last IV infiltrated and we had already left for the day. Jillian, Madison, and her mother spent the night in Gettysburg, much like I did last week, caring for the cats, cleaning up from lack of use, and doing some shopping. Dr. Davies, the fellow on duty, called at midnight to tell me that unless a viable vein could be found we would have to place a central line.

Those lines enter an artery at the groin and, while more permanent than an IV, are still less i9nvasive than a PICC line. I gave my consent, knowing that the procedure itself is fairly low risk, and today she looks far more comfortable.

Medicinally, Aurelia is down to 1.5 mcg/hr of Dexmedetomine and 2mcg/hr of Fentanyl, both steps in the right direction as we move toward extubation. Our plan is still to extubate today, and her nurse, Jessica, is weening Aurelia off the ventilator. Aurelia's temperature is fine, or low grade, as she wrestles with whatever it is she has in her lungs.

I'm hopeful today. Maybe we will have this tube out of our girl's lungs and we can get down to the business of accurate and adequate pain management for her distractors. Ideally I want plastics confident enough in Aurelia's status to train Jillian and me to move her jaw and thereby release us before we have Aurelia's open heart surgery. There is a chance they will want to keep us here until then, anyway, and that frightens me terribly. One day at a time, though, so we'll see.

Ugh

It was not a good night. After attempting to lower Aurelia's pain medication to give her a little more consciousness as we move toward removing her intubation, we had a serious setback at about 3:00 this morning. During a diaper change Aurelia used ninja reflexes to yank her sutured breathing tube out of her nose. As the team scrambled Aurelia held her own for a few minutes before crashing. Her heart rate and oxygenation plummeted and the team had to do chest compression for 3.5 minutes as they attempted to circulate a variety of medicines through her body.

Aurelia did not lose her pulse or stop breathing, but in order for the paralytic and stimulants for her heart and lung to reach the important locations the team needed to be sure her body kept its blood and oxygen moving. Once paralyzed they picked her up to a standing position and intubated her through her mouth. Things became more complicated when she did not come out of her medicated paralysis the way everyone hoped, so we stopped all pain medication, using the pain to stimulate her body into moving again. As of now, we are back at 1/2 the dose of pain medications we were using yesterday.

Of course this morning Aurelia lost her remaining IV and needed to get a new one in her right leg. She also has a fever again and we drew labs and sent off some of her phlegm to be cultured. There is some thought that an infection could be causing Aurelia's difficulty breathing without assistance. I personally believe this is a reflection of her typical difficulty coming off oxygen. When she had pneumonia this spring we needed to keep her on 1/32 a L of oxygen for a week just to keep her airway open. That's nothing - it's like a whisp of air that barely does anything. Aurelia has always taken a tougher track when it comes to breathing on her own. Another thought could be swelling from her adenoidectomy. We'll see. Either way, it doesn't look like we will be removing her breathing tube tomorrow.  I hope only for a good response from the labs and culture so that we can just worry about getting this tube out of her throat.

She's got a bath now, new linens, and she finally had a bowel movement, so here is to a day of no problems or troubles.

Here's our girl after her rough night. You can see the tube now taped down into her mouth as opposed to her nose, you can see her right arm restraint, keeping her from yanking at the tube, her new IV line behind the brace on her right leg, and a fresh diaper.