Scary Monday

What had been a great trip so far quickly turned scary at 3:00 a.m. when the back of Robbie's head became very swollen and ultra-sensitive to touch. The swelling was below his incision from his surgery to remove the encepholocelle. At 4:30 a.m. we had seen enough and loaded up the car and headed to the ER at the Princeton Hospital. We got checked out by the doctor and he said that it didn't look good but that it wasn't infected.

Before we left for the ER we had emailed Dr. Gearhart and tried to call Children's Mercy to talk to the On Call Neurosurgeon. We left the ER about 6:00 a.m. and were just waiting to hear back from one of the doctors to see what we should do and where we should go. Of course Dr. Gearhart was the first to get back to us and said he would try to put us in touch with his Neurosrgeon at Johns Hopkins. By 7:45 a.m. we were loaded up and headed to Baltimore. Dr. Gearhart had given our info to Dr. Ahn and he said he could squeeze us in between 11:00-12:00 if we could get there. By the way, we are still waiting to hear from the On Call person from Mercy.

The drive to Baltimore was about 2 1/2 hours and we were sitting in Dr. Ahn's Conference Room at 11:00 a.m. He checked out Robbie's head and scheduled us an ultrasound so he could see if it was just fluid build up, which is common after a surgery like this or if was a larger leak and potentially something that would require a shunt to be inserted. His gut feeling was that it was just a random leak and that there was no cause for serious concern. We went and got the ultrasoud done and the radiologist thought everything looked ok. We headed home about 3:00 p.m. and were about 15 minutes from Mimi's when Dr. Ahn called back and said everything looked good and that it was just a random thing that happens in these surgeries. We are now just making sure that the wound doesn't leak any fluid, the swelling doesn't increase and the area doesn't get red and cause a fever.

To say we are impressed with the care thaat Johns Hopkins has given us is a huge understatement. Dr. Gearhart might be the most caring person we have ever been associated with. He met us in person for the first time on Friday and is getting us in with a neurosurgeon on Monday. Dr. Ahn had no idea who we even were and treated us like we've been his patient from the start. If anyone ever has a need for any type of specialist in their life you need to see about getting out to Baltimore and heading to Johns Hopkins right away. There's a reason why someone like myself had heard of Johns Hopkins even before I needed them in my life. They are the best of the best and have been a God-sent for us. Thank God I ran into a coworker in the elevator at Mercy and she mentioned Hopkins.

Now we are planning on going back to Hopkins on Wednesday so Dr. Gearhart can take a look at Robbie's bladder and see how big it really is. At least now we know how to get to Hopkins and can just make the drive more enjoyable Wednesday. Just please send prayers that the swelling goes down and that his bladder is big enough to close up.