Friday, August 12 -- Both Lungs Collapse

The scariest day every for little Miss A. Around 6 am, her "good" lung collapsed. Her right lung had been deflated for surgery and Dr Downey had told us not to be surprised at the fact that much of it remained collapsed since then. Her left lung, which had been untouched by the surgery, collapsed this morning under the pressure of pooled saliva-- where you and I would just shift or cough out a little spit here and there if some went down the wrong pipe, she could not because of the paralyzing drugs, so after five days the amount had become too great in spite of frequent suctioning. At noon, just one quarter of one lung remained working. She was given Nitric Oxide to try to open her veins to receive more oxygen, and switched to a new ventilator that pulsed the air in gentle quick powerful puffs, and she was carefully "log rolled" to one side to aid in clearing her airways, but none of these had much effect.

The x-ray film above on the right was taken at 6 a.m. on 8/12. The black part of the x-ray image is the air in her lungs. Normally the majority of the chest x-ray would be black.  When this was taken only part of one lung was inflating, none on the other side.  What made the situation even more scary was that the remaining working piece of lung was already under stress because of being near the surgical site. We had already been told that that part could collapse at any time. We never expected to lose the other, healthy lung. The ventilator tube had been just slightly too small, and with her being under paralyzing medications for several days, lying still and unable to clear her airways, saliva had been pooling in the lungs, leading to the collapse. We sent out an urgent plea for extra prayers on her behalf. Soon after, surgery gave permission to take her off the paralytic meds and to replace her ventilator tube with a larger one to reduce the amount of air and fluid leaking around it--it was considered a risky procedure because it required moving her head a fair amount which could cause the tight, barely successful stitches to tear through the fragile tissue of her esophagus. Lucky for us, the charge nurse on call that day --who was also a former anesthesiologist-- was very experienced in placing ventilator tubes and could do it without hyper-extending her neck (avoiding strain on the surgical site), and to our great relief Dr Downey's hard work on her esophagus held strong. Almost immediately after the new tube was placed, her oxygen saturation levels improved dramatically. By four in the afternoon her lung had re-inflated. By six thirty, we were watching her rub her fist on her ear and try to open her eyes for the first time since Monday, with normal color and a relaxed expression on her face. Also for the first time since Monday morning, the flurry of activity around her bed subsided and we had a few quiet minutes alone with her to place our cheek on her forehead and kiss her good night. We enjoyed a celebration dinner with some good friends from out of town, who generously treated us to that special meal.

At 3:44pm Justin's Facebook status read:
Great News! As a last resort, the surgeon allowed Audrey's breathing tube to be replaced. The nurses found one of the most experienced anesthesiologist in the hospital to replace the tube in such a way that wouldn't place undue stress on her esophagus. The new larger tube makes a better seal with her lungs and has helped re-inflate her left lung. They have also been able to go down from full oxygen to only 40%. She is also on a new oscillating respiratory machine that that puts about 20 small puff a second into her lungs which creates a air currents in her lungs.

At 10:54pm my Facebook status read: 
Thank you again for all of your extra prayers for little Audrey today. Posted before and after photos of her x rays for any interested in seeing them. I find it interesting that after all they could do, it was exactly the time you were praying for her that things finally turned around. ♥

  

We had heard the term "sandbagged" so often in reference to tight EA repairs post operative, meaning that the kids were immobilized and not allowed to move their head for a couple of weeks after surgery. I had wondered if the sandbag was metaphorical, but no... it was literal! 

Also in the middle of all the craziness of the afternoon, we had our much-anticipated visit with the endocrinologist Dr. Murray, who explained clearly and thoroughly how she feels that Audrey does not fit the profile of classic hyperinsulinism and is probably simply dealing with an immature system as a result of her history--exactly what we'd all wondered from the start. She said that she might require Diazoxide for a very short time but should be able to quickly wean from that, and may need frequent small meals to maintain her blood sugar, and possibly continuous feeds through the night via her G tube for a while, but that her body should learn to manage its sugars reasonably soon. And that she absolutely, positively believes Audrey does not have pancreatic tumors, which she said are not malignant even when they are present, and that she was so sorry we'd been led down that path of thinking. I thanked her warmly and said that with all due respect, I hoped we'd never see her again.