Post-op day #6...today is the day!

December 18th: Well according to the medical team during rounds, today is the day! Big plans for my Emmy girl...the breathing tube is coming out, her continuous drip of pain medicine is being turned off, and she is getting rid of her foley catheter and the central line in her neck. Now the not so good news: her chest x-ray shows quite a bit of excess fluid in the lungs and there is talk of placing chest tubes to drain it. Definitely not what I wanted to hear...we're supposed to be getting rid of lines, not adding new ones! They've ordered another type of chest x-ray that will allow them to more accurately visualize where the fluid is, and a final decision will be made based on that study.

Evening update: We've come so far today! The ET tube, foley, and one of the central lines were removed. She is struggling a little with breathing on her own, and she is now getting a respiratory treatment called EZ-pap, to try to help her inflate her lungs more fully. Her labs show that her pH is high and the doctors say that some of her breathing issues may be the result of a metabolic process taking place in her body from all the diuretics. They changed her diuretic medication and are trying to resolve the issues metabolically before they move to more aggressive respiratory treatments. Worst case scenario, she would have to be re-intubated if her labs and respiratory status don't improve over the next 24hrs. The chest x-ray showed that the fluid is in the tissue surrounding her lungs, not in the lungs themselves so she will just need more time to mobilize that fluid and a chest tube should not be necessary...whew!

A couple other issues arose throughout the day. Emmy had to have a new peripheral IV placed because her medications are not compatible with one another so they can't all be administered through the PICC line in her arm. The continuous drip of pain medicine was turned off and she's been much more irritable today. They tell me that she's not in pain from the surgery, and that she's probably just worked up from her respiratory instability and the resulting shifts in her blood composition. The breathing tube was in for several days and most likely caused some irritation to her throat, so that may also be a contributing factor. In addition, the doctors have discussed with me the possibility that she is withdrawing from the pain medication. She was on the Fentanyl drip for 6 days and may have built up some dependence to it. The nurses are now doing abstinence scoring on her every 4 hrs and based on those results, they will decide tomorrow whether or not to start methadone to help wean her off the narcotics. Such a roller-coaster ride we're on...2 steps forward and 1 step back each day! It is very easy to get caught up in the daily struggles and forget how far she's come in just one week...she really is a remarkable little girl!

Post-op day #6 with the breathing tube finally out,

still swollen but making huge improvements!