Duke Trip

Today we traveled the 2.5hrs to Duke to meet with a new neurosurgeon. We have been searching for a local surgeon who would be willing to work with Dr. Warf in Boston.

We heard from the surgeon on Wednesday that our case file had been reviewed and that she would like to order the MRI (exactly as Dr. Warf recommended), but needed to see us in the office first. We weren't expecting to get much news as this appointment was more or less a formality to ensure that our insurance would cover the MRI the surgeon wanted to order.

It was a great appointment (well, except for the fact that our little guy has developed a tremendous phobia to white coats, paper covered exam tables and strangers, but can you blame him?). We LOVED, loved, loved the new surgeon. She was so kind and compassionate and spent so much time reviewing Pierce's case (including the time she and her nurse practioner spent reviewing his 142+ pg summarized chart).

She agreed with Dr. Warf that we need a detailed MRI before we determine what/if any surgical intervention is needed. You may remember that the only scans Pierce has ever have had been quick CT and rapid MRIs, meaning the picture quality isn't the best (think how hard it is to capture a non-sedated toddler on camera and you'll get the idea of why we haven't gotten a clear shot). And so, she has ordered the MRI to be done at Duke in the few weeks. We should have an appointment date soon. While I'm definitely nervous about Pierce being placed back on the ventilator for the MRI, I know this will be best for him and it's our next step to determine what's best for him.

The best part of the appointment was that this surgeon has no problem coordinating and working with Dr. Warf in Boston. She even stated that she'd fully support us going to Boston for the surgery and that she'd have no problem managing Pierce's care locally. Can I tell you how happy that made us?! To know that we finally have two surgeons, in agreement, like minded and willing to work together... nothing short of miraculous!

Thank you all for your prayers. Here's how you can pray for us in these upcoming weeks:
1. Pray that Pierce does not become symptomatic. Today the surgeon stressed to us how serious and emergent the symptoms could be if Pierce did start to be troubled by the fourth ventricle swelling. Let's just say they made the typical shunt failure symptoms (nausea, vomiting, headache) seem like a walk in the park. It's never easy to hear that your child could stop breathing or lose the ability to swallow and choke.... I'll be so glad when this isn't hanging over our head! So please, please pray that we never experience symptoms!
2. Pray that Pierce would tolerate the general anesthesia and the ventilator and that he would have no problem coming off. (I'm sure all my friends whose kids spent prolonged time on the ventilator will understand my nerves on that one!)
3. Finally, pray that the MRI would show that Pierce is a good candidate for the ETV procedure and that he would be able to have his shunt removed. This would be incredible as it would mean a life of shunt independence and one less lasting remnant of his extreme prematurity.

Thank you for continuing to pray for us and for continuing to follow us on this journey!
L