Busy busy busy

It has been a bit busy over at what I'm now calling the Fall Cottage, or Children's Hospital of Philadelphia. Aurelia was moved from one pod to another (not a very stressful or difficult thing, but the staff needed to shuffle around some room for beds. Overall, she's doing well and stable for the most part, but there have been numerous small changes and alterations to her treatment as they prepare her as best they can for Monday's surgery.

In general treatment over the last few days has revolved around Aurelia's digestion and breathing. Initially our plan was to have feedings begin on Friday, but general surgery wants to wait until some time after Monday since Aurelia's stomach still isn't processing enough fluid. This isn't really a problem, and it's certainly not something that has anyone too concerned, just a readjustment of an already fluid timetable.

The only real ailment that our team is watching very closely during these last few days is Aurelia's breathing, or respiratory rate. She had been on a diuretic two times a day earlier in the week, but seemed not to need so much help ridding herself of fluid so the team dropped the dosage to one. They also stopped her daily chest x-ray and adjusted her electrolytes as she began to have some changes in her nutrition intake.

This morning, however, Aurelia's respiratory rate climbed and hovered in the 100's. Normally somewhere in the sixties or seventies, this constantly elevated rate caused her too much duress so they administered some additional lasix and moved her diuretic up to the original twice a day dosage. The doctors anticipated ordering an afternoon chest x-ray but our girl bounced back, filled up her diapers, and has a negative fluid level for the day so that precaution has been called off.

This makes me very glad because her quick response to the medication and her rather exuberant urination means her kidney is working great. Add to that the still decreasing amount of fluid coming from her stomach and she's still doing well. Her weight loss is well within normal limits as well, and the only thing we'll see in the future that is new to us today is the arrival of a central line after surgery. We expected this, but in the commotion and details of Aurelia's case we both forgot that she'd have this procedure done to supplement her  feedings after Monday's surgery.

The nursing staff is still great and Jillian and I were excited to see our favorite, Pam, come over to our pod and visit with us for a good ten minutes. We just chit-chatted and got caught up, but it really made us feel welcome and a part of the care team here in the CICU. Every nurse has her own personality of course, but Pam really makes this place feel like home for us, and in a scary place where children in warmers or cribs come and go, nurses and doctors scurry from one patient to the next, and monitors beep ominously over the heads of innocent babies, that says something.

There was even a moment where six or seven nurses gathered in our pod (only one baby beside Aurelia is here) and just talked with one another, laughing and chuckling, sharing stories and smiles, and it made Jillian and I feel so relaxed and relieved, and really comfortable among everyone working. We didn't feel at all in the way or unwelcome or awkward, and that is great.

I'll post an additional reflection later today, but it had been some time since we updated and I wanted to share this news. A few other things to share include my 4th period students chipping in together and convincing the mother of one of the students to create and gift us with this amazing flower arrangement brimming with care and love and concern. I cried in class (and over lunch when they couldn't see me) and Jillian cried as well when she got the voice-mail. Madison was hysterical when she saw me today, running toward me in the parking garage and then being so excited she ran in circles around me with a huge smile. I think most special of all (other than those moments when Madison was snuggled on my shoulder napping) was holding Aurelia for a good hour straight. She kept her body temperature up, she cooed, smiled, pursed her lips, made little faces, pooped (yay!), and twitched away in her dreamland. It was heavenly, even though I was exhausted and could barely keep my eyes open!

For now Jillian and I are going to head back to the Ronald McDonald House and get some dinner and then call it a night. As much as I'd love to be here for hours this evening, I need to rest up and prepare for what will be a very stressful few days and evenings. Love to you all!