Day 22

• current weight 4 kg or 8.8 lb
• still on 1/8 of a liter of O2 with stats from the high 70’s to low 90’s
• currently on IV fluids only for the Ph Probe – so she’s hungry!
• she looks fabulous in red

For those of you that didn’t understand the prolene deficiency post, allow me to explain. Prolene is the suture material that will be used to close up Arabella’s chest after her operation. She is stable. She is not able to eat. She is not able to wean from the oxygen. What she needs is surgery. That is the point the doctor was making – she has a prolene deficiency – that she needs to have the stitches in her chest and the surgery behind her. Once she has surgery, we are hoping for a vast improvement. :)

I, Shelly, am back at the hospital for the week. My sister-in-law, Marissa, has the kids this week. Becca has a TAKS Writing Assessment on Tuesday. And our hope is that this week will be the week for surgery. We’ll see how everything goes.

The Ph probe – interesting test. They insert a tube through her nostril that looks like an NG tube, except there is a little metal piece in the tip. This tip measures ph. It is attached to a recorder that looks like a walkman that I had many years ago. There are some buttons on the walkman. One I have to push twice whenever she moves position and another I have to push whenever she eats and then again when she’s done. I have a recording sheet where I have to record every cough, hiccup, movement, and eating episode for the next 24 hours. So fun! To my friend Kristen, it reminds me a lot of Miss C’s test, but without video. :) They are going to have to give her bolus feedings (large amounts) rather than the continuous drip so they can get an accurate reading for the probe. She does not have to nipple her feedings, thank goodness. They will just send it down her NG tube faster than the continuous drip did. All this should let us know if she has reflux or not.

The doctors have rounded. We have a new team of doctors – it’s March now. The joys of a teaching hospital. We are working on scheduling, they tell me. (in my mind, yeah, yeah, whatever) I told them sweetly with a smile on my face, “They know, right, that if they have a 1:30 open up and it’s 1 o’clock, I’m OK with that, right?” Collected polite laughs. Yes, the doctor agrees, he’s fine with that too. Afterward they all politely turn and file from our room. The fellow hangs back and explains they had two emergencies over the weekend that took up slots one for today and one for tomorrow. The one just decomposed so quickly, he says. It’s frustrating - he reassured me. Left in the silence of Bella’s pulse-ox machine going off for the millionth time today, I ponder the blessing of her stability. Is she too stable for surgery? Is that the only way to be repaired around here? I have to stop my mind there. It is a blessing that she is stable. It is a blessing that she is doing so well. I’m ready to move forward, that’s all.

Sorry about my tone today – I am feeling a little sarcastic today, very blessed, but defiantly sarcastic. :)