So, around 1:15am, Chad called the after hours doctor line through Grisinger and told the nurse Lu's symptoms and she said we had better go to the ER. When the ER doctor first listened to Lu's lungs she said, "They sound a little wet." My first instinct was to shout, "How dare you!" Let me add a little back story here. I have mentioned many times that pneumonia is a very common and very serious complication of Rett Syndrome. Children with Rett get it a lot. I have seen many girls spend weeks in the hospital trying to recover from pneumonia. In addition to the usual ways people get pneumonia, children with Rett can also get aspiration pneumonia from aspirating on their food or drink. So, any time in the past that Lu has been coughing, phlegmy, and had any kind of fever, I take her to the doctor...just to make sure. And each and every time the doctor has said her lungs sound good. And then this morning they sounded "a little wet". However, fortunately, after a lung x-Ray it was determined that she did not appear to have any pneumonia. The doctor did say though that aspiration pneumonia can take a little longer to show up, so we followed up with the pediatrician this afternoon. She said she sounded barely wheezy at all now.
While at the hospital during the night, Lu had two breathing treatments of albuterol, more Tylenol, a steroid, and swabs for the flu. The nurse also was able to suction a bunch of junk from the back of her throat. But, she is still full of snot. So we left with a prescription for a nebulizer to use at home. We have done two treatments on our own and we are staggering Advil and Tylenol to keep her temperature down.
Here is what Lu has done for the past two and a half days:
And here is what she wanted to express while at the doctor appointment this afternoon:
So she doesn't have pneumonia and we are so, so, so very glad for that. But I'll tell you what, when that woman said her lungs sounded "a little bit wet" I felt like she had just slapped me across the face. Or socked me in the gut, or tore my heart right from my chest. It was difficult to accept the facts when we determined that Lu needed a feeding tube, but Rett Syndrome just takes control of her mouth and her body, and no matter what I tried to do to stop her from losing weight, it just didn't help. And seizures, well, there just isn't much I can do about those either. If they are going to happen, they will happen, and our only line of defense at this point is medication. But getting sick, getting "wet" sounding lungs, I have a whole heck of a lot more control over that. And so I might be a bit of a zealot about trying to keep Lu from getting sick. I don't send her to school. I don't let therapists come when they are even a little sick. But I know I can only do so much and we still certainly go out to all kinds of public places and have people over...I don't keep her in a bubble (yet).
The plan now is to just get the sickness out of her before it settles in and tries to become pneumonia, or an ear infection, or whatever else it might want terrorize her with. She's just so pale and lethargic. I miss her. I miss her being awake and talking to us and smiling. I'm a little sad that she slept through Christmas. I am mostly sad because she and I worked really hard for months on homemade presents for everyone and she missed them being opened. She always gets pretty excited to give gifts and see people get excited about them. There's always next year.
Anyway, Chad and I had about two hours of sleep last night and some snippets of cat naps here and there throughout the day, so we are exhausted. I'll post a healthy picture when Lu gets better, which will hopefully be soon!