We met with Cole's Neurosurgeon, Dr. Myseros on Tuesday for a 6 month check and he was very impressed with how Cole is doing. Specifically he was very pleased with his speech and that he was walking. When I mentioned he is still seeing an Early Intervention Specialist and they are tracking him about 3-5 months delayed still he said, "no child born at 25 weeks with hydrocephalus will escape delays." Something we of course know, but it's hard to hear. Of course my question was, "does this mean he won't get A's or does this mean he won't be able to take the same classes as other kids?" His answer, as with most doctors was, "time will tell." We are so happy with how he's doing that we choose to focus on the positive progress we've seen lately. We took him to Sports Authority the other day and let him walk (instead of being carried or ride in a cart). At one point Reagan ran one way and Cole went the other and I thought, "here we go!" We are so pleased he continues to progress.
Unfortunately we missed the doctor at the last appointment in February due to a scheduling issue (his morning surgery ran long) and saw the nurse practitioner. So we had a more detailed conversation about the CT scan. Overall he said the shunt looks good (the white spot in the middle of the brain on the picture below) but that his ventricles are "teeny tiny" (the dark spots at the bottom). This is not necessary a good thing - it means that the shunt is withdrawing too much of the Cerebral Spinal Fluid (CSF) from the ventricles. There have been many attempts at creating a programmable shunt so doctors can modify the "flow" of CSF, but they have thus far proven to cause more issues than be helpful. The biggest concern with an overactive shunt is that the ventricles will occlude the catheter. Think of it like a soaker hose in the garden - you need the holes in the hose to let the water out. If the dirt gunks up the holes it backs up in the hose and can't release the water. The shunt is the same way - the catheter has holes to drain the CSF but the small ventricles collapse on the catheter restricting the flow. Unfortunately there is nothing we can do to fix it. The US statistic for probability of a shunt revision in the first year is 40%. However, Dr. Myseros's statistic is 10%. We beat those odds! We know we are in good hands and that he will make the right decisions for Cole. We know the probability of a shunt revision in the first 10 years is 99% but with the decreased ventricular size Cole has an increased risk of a malfunction. We will just keep praying that it waits as long as possible and that we catch it quickly. Cole will need another CT in February and we will have a follow up with Dr. Myseros then.
We also talked to Dr. Myseros about taking Reagan as a patient. He said he would love to have her and that he doesn't see any issue with performing epilepsy surgery if it's needed. As he said, "it's really not that hard Danielle, grey matter is grey matter." He recommended we bring her back with Cole in February since she was just seen by Dr. Yaun. Below are two pictures of Cole with Christine Mason, Nurse Practitioner and Dr. Myseros, Neurosurgeon.
Unfortunately we missed the doctor at the last appointment in February due to a scheduling issue (his morning surgery ran long) and saw the nurse practitioner. So we had a more detailed conversation about the CT scan. Overall he said the shunt looks good (the white spot in the middle of the brain on the picture below) but that his ventricles are "teeny tiny" (the dark spots at the bottom). This is not necessary a good thing - it means that the shunt is withdrawing too much of the Cerebral Spinal Fluid (CSF) from the ventricles. There have been many attempts at creating a programmable shunt so doctors can modify the "flow" of CSF, but they have thus far proven to cause more issues than be helpful. The biggest concern with an overactive shunt is that the ventricles will occlude the catheter. Think of it like a soaker hose in the garden - you need the holes in the hose to let the water out. If the dirt gunks up the holes it backs up in the hose and can't release the water. The shunt is the same way - the catheter has holes to drain the CSF but the small ventricles collapse on the catheter restricting the flow. Unfortunately there is nothing we can do to fix it. The US statistic for probability of a shunt revision in the first year is 40%. However, Dr. Myseros's statistic is 10%. We beat those odds! We know we are in good hands and that he will make the right decisions for Cole. We know the probability of a shunt revision in the first 10 years is 99% but with the decreased ventricular size Cole has an increased risk of a malfunction. We will just keep praying that it waits as long as possible and that we catch it quickly. Cole will need another CT in February and we will have a follow up with Dr. Myseros then.
We also talked to Dr. Myseros about taking Reagan as a patient. He said he would love to have her and that he doesn't see any issue with performing epilepsy surgery if it's needed. As he said, "it's really not that hard Danielle, grey matter is grey matter." He recommended we bring her back with Cole in February since she was just seen by Dr. Yaun. Below are two pictures of Cole with Christine Mason, Nurse Practitioner and Dr. Myseros, Neurosurgeon.
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