3-2-10 Visit to John Hopkins

Our family had a very long day today. I'd like to thank everyone who was praying for us. We have been receiving letters, calls, and emails everyday filled with encouragement and prayer support, and we feel so blessed by that! We were a sleepy bunch as we headed for Baltimore today. Evelyn and Dean are just about over their congestion, but Kara was up half the night (with me) coughing. I can't complain though because Ben worked night shift and slept for a total of 3 hours before hitting the road. We dropped the girls off at their Grandma's (Ben's Mom) who was gracious enough to take time off to have them for the day. Ben and I arrived at John Hopkin's outpatient center at 2:30. We met with Dr. Ahn (neurosurgery) and Dr. Simmons (plastic surgery.) They both agreed that Dean had Sagittal Craniosynostosis and would require surgery. However, they do not think Dean is a good candidate for the minimally invasive surgery. They have found that if the minimally invasive surgery is done after 3 months of age that there is a higher possibility of needing another surgery later on. They would like to perform the reconstructive open procedure on Dean at around 6 months of age. This surgery is done by cutting a zigzag incision from ear to ear (called a stealth cut because it will camouflage the scar when his hair is wet etc.) They will then remove the back half of the scull and the plastic surgeon will reshape it and put it back in place. Dean will not need a helmet after this procedure since he will come out of surgery with his head reshaped. Due to the seriousness of a surgery like this, we were told to expect a 7 hour surgery, one day in the ICU, and several more days in the children's hospital. I will admit that I am disappointed that the minimally-invasive surgery is no longer an option for him, but I am thankful that I have one less choice to make. Ben and I felt very pleased with both doctors. They took their time with us and provided us with confident answers to all our questions. They said they do a surgery of this type every week, and that there are very few complications. Two of the big concerns during the surgery are tearing the membrane that protects the brain and disturbing the sagittal sinus (a dilated channel for venous blood.) If the membrane is torn they can easily fix it; from what I understand, the concern is that they notice if it tears while removing the scull. Protecting the sagittal sinus is much more serious because it would mean an enormous loss of blood, and the danger of having air enter the channel and cause an air embolism. These are two concerns that we will definitely be keeping on the top of our prayer list. Since we now know that we do have to do the open surgery we could have it done at Geisinger where he was first seen. I am currently leaning toward John Hopkin's although it is much farther. Not only do they have their incredible reputation, but I felt very comfortable with the doctors I saw today. Dr. Simmons held Dean during most of the appointment and gave us his cell phone number and email so we could contact him with any additional questions. We know the Lord is taking care of Dean, and will guide us as we choose his surgeons. I expect to hear from John Hopkin's later this week on when they would want to schedule Dean for the surgery. I am just thankful for our progress today, our safe traveling, and the support from loved ones (especially Ben who brought us home at 9 pm and then went back into work.) Dean has another craniosachral therapy appointment Thursday and I will update again after that (however, I will not be able to post until Friday night.)