Most of you have probably been keeping up via Facebook. For those of you that do not have fb here is the latest....
Shawn and I were watching Sunni yesterday and thinking that she looked better and that the swelling might be going down a tad, tad bit. Then she started having what appeared to be a seizure. Her eyebrows started going up and down. Then her eyes started twitching along with her fingers, nose, and lips. She was blowing huge bubbles and drooling everywhere. Her heart rate was all over the place. The nurse called the dr to let her know...after waiting an hour for her to even show up and these episodes happening pretty often, the dr said she didn't think it was seizures but pain.
Shawn and I disagreed with that assumption. We knew this was not Sunni's way of showing pain. Besides that she has had a blank look on her face. She does not look at our faces anymore or follow our voice with her eyes. It is like Sunni is not "there" anymore. She does not clench our fingers with her hands. It is heartbreaking. We did not feel like we were getting any answers and that they weren't concerned enough by all this.
During night rounds Shawn kind of lost his cool. And finally they listened. He kept them there long enough that they got to witness these seizures and they finally agreed they did appear to be just that. She got a small dose of Ativan and that helped for about an hour and the spasms slowly came back so they decided to start Phenobarbital which is used to control seizures. She is still blowing bubbles and drooling but the spasms have gone away.
They have ordered an EEG for sometime today which measures and records electrical activity in the brain. She will have an MRI tomorrow.
If all that was not enough, surgery came by as well and told us that the pleural effusion is loculated which means there are pockets of that fluid all in her chest that can not escape. The two chest tubes that she has can only empty those two pockets. And that basically she has developed scar tissue and all of that along with the fluid is compromising her left lung (what little lung she does have---we were told 25%). SO the big plan is to have a major invasive surgery sometime this week. They want to cut her open and "clean" out her chest. They told us this is kind of a last resort but that they feel that this is the only option and what it has come down to.
BUT she can not have that surgery until the seizures are ruled out because the anesthesia she would have to have can not be done with brain issues going on.
The seizures could be caused by 3 things..
1. Infection---which they have tested for and ruled out
2. Clotting of a vessel to the brain
3. Swelling of the brain
This is a lot to take in. Shawn and I are just hanging in there. We love this little girl and are definitely not ready to give up. Please keep fighting baby girl!!