Tuesday was quite a day for little Madison. The day kicked off with yet another MRI to check the status of the last procedure and to see the size of the fourth ventricle. After that, it was off to neurosurgery for a consult on the MRI and a quick look at all of her stitches. Finally, we rolled over to neurology for an evaluation and work-up.
The MRI results were good and bad. All of the spaces with catheters are draining, plus her fourth ventricle looks slightly smaller from a couple of MRIs ago. It may just look smaller since the spaces in her brain are moving around as fluid drains, but it’s better than looking bigger. Her eye-crossing has gotten a little bit better, so that may support the theory that the ventricle is smaller in size. Unfortunately, the ventricle is still too big, and she will probably be looking at surgery in the next couple of weeks. Our surgeon is out of town, but he will review the MRI later this week and make a decision on next steps. The other piece of bad news is that her brain is not expanding back around the draining cyst on the left side. While her brain matter has re-expanded on the front right where we drained earlier, for example, the rear left is not recovering. Most of the damaged areas deal with visual interpretation and language interpretation. Still, she is very young so there is ample opportunity to retrain her brain to pick up some of the slack in healthier portions.
Neurology went well. Other than her eye-crossing and a little stiffness in her arms and legs, she looked good to them. All of her movement is bilateral, and her reflexes are what you would expect out of a newborn. The are going to stop increasing her anti-seizure medication as her weight increases, effectively reducing the dose to see what happens. Given her history of seizures she is more susceptible to future seizure activity, but her history may be due to the pressure that had been in her brain. Now that the pressure is reduced, the need for anti-seizure medication may be lessened.
The neurologist agreed that the pressure from the fourth ventricle is likely a contributing factor to her eye crossing. Something called the “sixth nerve” runs through that area and is very susceptible to being stretched by this type of pressure. The sixth nerve helps the eyes move outward, so any stretching would inhibit that and cause crossing. The crossing is getting milder, and the neurologist felt the impact of the sixth nerve, while contributory, was not alone. He recommended we see an ophthalmologist (wandering eyes are not uncommon with preemies), and we already and an appointment set for the following day.
Wednesday will be another busy day for Madison. Denver Options comes over in the morning for an in home therapy session for her and Noah. After that, its back to Children’s for a meeting with their rehab department. Then in the afternoon, it’s off to the ophthalmologist at Children’s for a 2-3 hour dilation and exam.
My parents (Paul and Paula) are in town, and they have jumped in with both feet. Mom is feeding and changing, while Dad is cooking dinner and running errands. The house is a bustle of activity, and I’m not sure the dogs know what to make of it.