Andrew update

So we went down to Gainesville last Friday (March 12) and met with the nuerosurgeon, Dr. Pincus. He told us that a child can have a cyst the size of Andrew's and never have it treated - shocking to me! However, because Andrew's cyst is pushing into the center of his brain and causing mild hydrocephalus, his does need to be treated. So, the plan is (most likely) to go into his head through 2 small holes - one on top of his head and one behind his ear (they'll know for sure after the MRI) and cut windows into the cyst. This will allow the CSF to drain out and hopefully the brain will do its part at this point and absorb the fluid normally. Assuming this happens, he should be in the clear. If not, a shunt could potentially be placed in his brain. He will stay in the ICU for one night after surgery then be moved to a regular room for a minimum of 1 night. The good news for now is that his head has been growing large enough to be able to keep up with the swelling cyst and ventricles in his brain - the doctor doesn't suspect any damage done up to this point. When we met with him, he told us that he believes that as long as we have the surgery within a month, all should be well - that Andrew is not in any immediate danger. He also mentioned that "Andrew will never have a pretty MRI, but that's okay" - that his brain will never fill back in fully the place where the cyst is now. I don't know why that surprised me, but for some reason, I thought his brain would just fill back in. Aparently there is enough extra space in the brain to have a cyst - who knew?

So, we are scheduled to have an MRI at Shands on March 30, then we'll meet with the doctor again to get the detailed plan for surgery, then we'll have surgery on April 1. It still sounds scary, but we just feel so blessed that things seem to be okay. For now it's just your routine brain surgery! We continue to pray that all will go as planned and that Andrew won't have any complications during the surgery. We are so grateful to those who have expressed well wishes and have kept him in their prayers. Thanks so much for the love and concern. We'll update after surgery!

Andrew's Head Woes

As word gets around, we feel like we should let everyone know what is going on with our family. During a normal well-child visit on March 3rd for our son Andrew (15 months old), the nurse practitioner noticed that Andrew’s head measurement was a bit big for his age (above the 98th percentile) and that he was a bit slow in walking / talking. She was a bit concerned that he had a condition called hydrocephalus (an abnormal accumulation of liquid in the brain) and recommended that he get an ultrasound to evaluate this possibility. He had that ultrasound on Friday, March 5th, but the tightlipped technician did not let any information come out about the results.

On Monday morning, March 8th, we received the results of the exam: Andrew had hydrocephalus and would need treatment (brain surgery, always a scary phrase) very quickly to alleviate the pressure on his brain. Our pediatrician’s office scheduled us for a CT scan that same afternoon to confirm the diagnosis and help get Andrew ready for treatment. We took Andrew in and let him cry through the CT scan and waited for the results.

The results came in later that afternoon. Andrew did not have hydrocephalus, but instead the focus shifted to a large arachnoid cyst in his head. It is about 5cm x 5.6cm and causing some shifting to go on in the brain (as well as some other stuff). The recommended treatment (according to the local pediatrician) for his cyst is some form of head surgery in which a shunt is inserted that drains the excess liquid from his head. Another possibility is a more invasive procedure in which the doctor enters the head and cuts open the cyst (allowing the liquid to drain out), leaving behind no shunt to drain future liquid.

Further evaluation and treatment are not possible here in Tallahassee, so we have just been referred down to Shands in Gainesville. Andrew is scheduled to be seen by a pediatric neurosurgeon on Friday, after which we will (hopefully) have a treatment plan moving forward.