Tuesday night was rather hard for us parents. This is one of those times parents don't want their child to get A's and B's (Grades in school being the time you want them). A's are apnea's where one forgets to breath while sleeping. B's are bradycardias which is when the heart rate drops significantly. Most preemies have A's and B's because of their immaturity. Tyler has had a few here and there. In the past he has needed little if any stimulation to come out of it. Tuesday Tyler had Increased episodes of A's and B's that required more stimulation to come back. This is a sign that the pressure in his head is starting to affect him. When we got to see him Tuesday, Tyler was very happy to see us. He opened his eyes for us and was tracking to find Daddy's voice. I got to hold him and he settled down very comfortably. We were very happy to see these signs.

The fluid in Tyler's head that is causing all this pressure is spinal fluid. The ventricles in the brain produce close to a quart of fluid a day (4 quarts in a gallon). The blood clots have disrupted the natural flow of this fluid from the ventricles, down and then up the spine, and finally to the outside of the brain where it is absorb back into the body. We believe the area blocked is between the 2 small lower ventricles, which is causing the right and left ventricles to expand. They started Tyler on a drug that is designed to lower the production rate of the spinal fluid being produced. This is a temporary fix that has seemed to ease Tyler's symptoms. His A's and B's have decreased in frequency and severity over all. He was more alert and moving around more today. The problem with this is he gets a dose every 6 hours. The last hour before his next dose is when we start seeing the symptoms returning.

The team of Dr's, nurses, and surgeons assure us that Tyler isn't at risk right now for more brain damage. In the next breath they say we need to find ways to alleviate this pressure before we do put him at risk. As the blood clots break up and reabsorbs, the spinal fluid can get gritty and clog up the natural drainage in the head. Over time the clots will naturally go away and not cause any more problems. Because of the clot's placement and size, the time we need to absorb it is greater than time Tyler's head can tolerate the pressure from the backing up of fluid. This is not a blood clot that can get into the blood-stream and cause the problems most often associated with clots.

Thursday we go into surgery to put an external drain in his head. There are a few big reasons we are going with a drain over a permanent shunt right now. The drain will allow us to actually see the fluid that is in his head. If it's gritty, a drain is easier to keep clear where as a shunt can get block just as badly as the natural pathways. If a permanent shunt gets clog, it's another surgery to clear it. The drain will also give us a better gauge to know if he need a permanent shunt. He could only need the drain for a week or two and then no longer need any form of drainage. It may also tell us that he will need the permanent shunt. It gives us a clearer idea of what is truly needed in the long run. The main risk to adding a drain and is infection. The risk is rather low compared to the benefits.

Brain surgery sounds scary no matter which way to look at it. This procedure is rather quick, about an hour. The installation of the drain takes about 20 minutes of that hour and the rest is dedicated to cleaning and getting rid of germs. If this was an adult or older child, this procedure would be done at bedside rather than in the OR. Preemies are just that special. He will go directly from the ICN to OR and then right back to ICN to recover. He will have a little tube coming out of his head connected to a collection bag, very similar to the chest tube he had. (I think he is trying out different types of tubes). We should see results very quickly and he should get back to the normal Tyler days.

On another front, Tyler Thursday morning decided he was done with respiratory help. He pulled out this Hi-flow and told the staff that he wasn't interested in having it back in. So he is breathing on his own and room air. Yeah!!!! We won't tell him that he will be on a ventilator for a little while until he is recover from Anastasia.