I tried to write a post yesterday. Maybe I will clean it up and post it. Yesterday I felt as though I was blindsided. All outward signs were good. Sarah seemed to be improving. Slow but marked improvement. I expected that we would begin a slow wean on her oxygen setting. I expected that we would be able to start to feed her.
Sarah had begun to play again. She was waving her hands around and bouncing all over the bed. She would scoot to see whatever she wanted to see. She was not staying in whatever position the nurses or I chose for her. She played peek-a-boo with me when I picked her up. She asked for Da-da-da and La-la-la (Lily.)
She looked great!
And then she didn't. Honestly, it was not dramatic. Looking at her, I thought she needed to cough. She need chest PT. She needed to re-position. The doctors decided to do an x-ray. When they ordered the x-ray the question was simple: Is Sarah maintaining or is she improving? Neither, as it turns out. She was working hard, and she was getting worse. Her lung was collapsed again.
So she went back on the bipap. And the PICU team got serious about getting all the specialists on board together to figure out what is going on and how to progress. ENT will evaluate her airway. Pulmonology will evaluate her lungs. Plastics, who have been following all along and probably have the best picture, will weigh in.
ENT always says trache. If there is a problem with breathing, that is their solution. It is a good one. It means a secure airway. It means we do not intubate for future surgeries. It means that whatever else happens, we can get air in her lungs. Pneumonia, airway obstruction, lung disease etc., all the respiratory problems we have faced with Sarah would be easier to address. And some would just disappear.
We have been resisting the tracheotomy. If Sarah needs something, we will do our best to get it for her. But she needs a lot. So, my perspective has been to get whatever she needs, but to make absolutely sure she needs it first. No extras.
We know she has had problems with her lungs. We do not know what the problem is. Without knowing what is wrong, how do we know whether this will fix it?
Today both pulmonology and plastics weighed in. They both think she needs a trache. A trache is not permanent, but no one will say how long she will need it. They cannot. What we know is that to do a good evaluation of her lungs, she has to get better. We cannot evaluate her long term picture, we cannot know if there is a chronic issue or if there is what it might be, until we address the acute problems.
The next step might be to have a meeting with all the specialists, but it might not be. I have spoken with them. They agree. What we are doing is not getting her well and it is not sustainable. Trache is probably the best next step.
In preparation for that, Sarah would get a broncoscopy. A mini-camera will look at her airway and lungs to assess what is wrong. We might get firm answers. We might not. We will certainly get more information. In any event, no one can think of an explanation for status quo which would be addressed in some way other than tracheostomy.
No decisions have been made. But in case it is not clear, we are headed down what appears to be a direct path to tracheotomy. That is new and a little scary. But to be honest, it cannot be as scary as wondering whether or not she is getting enough oxygen, as we have had to wonder every time she has gotten a cold. One of our favorite doctors wondered if her baseline at home has always been low oxygen. It is a real and frightening possibility.
Lots of questions. Lots of doctors.
We are praying for peace in facing all of this. We are praying for answers and progress soon. We have spent three weeks in the PICU. We want to go home.
Sarah had begun to play again. She was waving her hands around and bouncing all over the bed. She would scoot to see whatever she wanted to see. She was not staying in whatever position the nurses or I chose for her. She played peek-a-boo with me when I picked her up. She asked for Da-da-da and La-la-la (Lily.)
She looked great!
And then she didn't. Honestly, it was not dramatic. Looking at her, I thought she needed to cough. She need chest PT. She needed to re-position. The doctors decided to do an x-ray. When they ordered the x-ray the question was simple: Is Sarah maintaining or is she improving? Neither, as it turns out. She was working hard, and she was getting worse. Her lung was collapsed again.
So she went back on the bipap. And the PICU team got serious about getting all the specialists on board together to figure out what is going on and how to progress. ENT will evaluate her airway. Pulmonology will evaluate her lungs. Plastics, who have been following all along and probably have the best picture, will weigh in.
ENT always says trache. If there is a problem with breathing, that is their solution. It is a good one. It means a secure airway. It means we do not intubate for future surgeries. It means that whatever else happens, we can get air in her lungs. Pneumonia, airway obstruction, lung disease etc., all the respiratory problems we have faced with Sarah would be easier to address. And some would just disappear.
We have been resisting the tracheotomy. If Sarah needs something, we will do our best to get it for her. But she needs a lot. So, my perspective has been to get whatever she needs, but to make absolutely sure she needs it first. No extras.
We know she has had problems with her lungs. We do not know what the problem is. Without knowing what is wrong, how do we know whether this will fix it?
Today both pulmonology and plastics weighed in. They both think she needs a trache. A trache is not permanent, but no one will say how long she will need it. They cannot. What we know is that to do a good evaluation of her lungs, she has to get better. We cannot evaluate her long term picture, we cannot know if there is a chronic issue or if there is what it might be, until we address the acute problems.
The next step might be to have a meeting with all the specialists, but it might not be. I have spoken with them. They agree. What we are doing is not getting her well and it is not sustainable. Trache is probably the best next step.
In preparation for that, Sarah would get a broncoscopy. A mini-camera will look at her airway and lungs to assess what is wrong. We might get firm answers. We might not. We will certainly get more information. In any event, no one can think of an explanation for status quo which would be addressed in some way other than tracheostomy.
No decisions have been made. But in case it is not clear, we are headed down what appears to be a direct path to tracheotomy. That is new and a little scary. But to be honest, it cannot be as scary as wondering whether or not she is getting enough oxygen, as we have had to wonder every time she has gotten a cold. One of our favorite doctors wondered if her baseline at home has always been low oxygen. It is a real and frightening possibility.
Lots of questions. Lots of doctors.
We are praying for peace in facing all of this. We are praying for answers and progress soon. We have spent three weeks in the PICU. We want to go home.
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