Saturday, March 19, 2011

Saturday Sillies and ENT update

For some reason, Lillian carried her feeding bag over to the hallway and this is what we found...what a cuke! We had a follow up visit to the ENT for her ears. Her ears, which I have already been treating again for two weeks, were clear...course, that is the hope when antibiotics on board. So why oh why is she still draining snot like a fountain?? Her allergy tests were negative. Viral something for weeks and weeks yet months on end? I think not. I get so discouraged. I'm so exhausted of her being sick ALL the time. The snot, the congestion, the heavy breathing, the vomiting, the coughing all worries me....GREATLY. She cannot possible FEEL good. It escalates and gets worse, it gets a little better, then it gets worse, it just cycles round and round. I told the DR. that I felt lost, I just don't know what to do anymore. Here's the thing, her ears don't drain, even with tubes. If we ignore the drainage that starts in her head, her ears eventually rupture. I'm at a loss and feel totally incompetent. I left the office, four prescriptions in hand, and a one month plan to come back for a tonsilectomy if she is not better. Tonsilectomy. That scares me. Lillian tends to bleed. If you know tonsilectomy, the risk, bleeding. She struggles so much. More surgery...still possibly removing the adenoids and maybe getting the pharyngeal flap in. Talk about second guess Sally, that is me. I think I need a good cry. I hate hearing coughing in the night, and that is the main serenade in this house these last months. She has starting waking up A LOT in the middle of the night recently, so I it the coughing, is she refluxing, is she just having bad dreams, is she having apnea episodes? The heavy night breathing gets my dander up, as you can imagine.
There is nothing worse, at times, then your own mind. My drive to KY and back makes that all the worse. I try to listen to the radio, talk to Lillian...something to stop my thoughts, but I can't shut it down. My cousin, rescued me with a phone call all the way home yesterday. PTL.
I will end with this little video of her morning sillies...


  1. I soooo love those long legs and all those words!! How fantastic is that? It never ceases to amaze me how in spite of all her challenges, she continues to grow and flourish. Hang in there my friend - praying for you <3

  2. Poor Lillian, that's so frustrating when you can't figure out what's going on!