Ash has presented with a complication. For days the fluid that is being discharged from her lungs has turned from a clear fluid to a milky fluid. We sent it out for testing to see if the triglyceride level was higher than it should be and last week it proved not to be. We were all a little confused, but accepted that what they thought was happening to Ash had not. Today they tested it again. The level came back 3 times higher than it should have proving that she had suffered a chylothorax. From what I can tell it is an injury to her thoracic duct and lymphatic system. Basically our best guess is that it occurred by accident when her chest tube on the left side was placed. What is happening is that lipids or fat is leaking out of her lymphatic channels into her plural effusions. What do we do about it? We remove all fats from her diet. Since all she is fed is formula we have put her on an elemental formula that has no fat content in it. As we wait for it to heal (which could take weeks to months meaning the chest tube will have to remain that long) we continue testing the fluid and wait for it to return to the normal pink tinged clear fluid that should be coming out. If it doesn't work then she will be taken 0ff formula completely and become TPN dependent until healing occurs. The fellow came in this afternoon and was trying to explain it all to me and finally she said, "All I can tell you is that this chest tube is going to have to become as dry as the Sahara before we pull it out." It was at that point that I felt the walls caving in and begin to overwhelm me. In extreme cases of chylothorax it has to be corrected surgically. I don't even want to think about that.
So this evening I am feeling discouraged. Wondering when and how we will make it back home. My heart is sad and I tell myself that God has not been taken by surprise. Even though I KNOW that to be true I stare at that little pickle lying on the bed across the room and wonder just how long it will be before she is back in her own bed. That's really all I want. Her home. Her bed. Her family.
The whole vent issue is a long story as well and to be honest I am just emotionally drained. She will more than likely be on the vent all week long because the plans have changed again with the change of physicians. They rotate weekly and it seems they all do things differently. She remains on the lowest vent settings possible and that is encouraging, but there is no plan to extubate anytime soon. Hopefully it won't be too much longer because she HATES the breathing tube.
Other than these issues it was a good day. Ashley slept for 12 hours of it. From 6:30am to 6:30pm. She woke up to sing "itsy bitsy" and then by 8:00 she was sleeping again. I told you we were exhausted! I was so thankful to see her resting and not withdrawing today. That was our blessing in the middle of all the other nonsense.
Now that I have completely rambled on and on and probably lost most of you by now I will close by saying how much we love you guys. This is an incredibly long road and I can't believe your still walking beside us. Thank you so much. Good night. Trish