Eastons surgery

Well we made it to North Carolina with a pretty much uneventful flight. Thursday we went to the hospital and met with Dr.Muenzer and his team, the neurosurgeons and had some testing done just blood work and an EKG. everything came back go so we moved ahead with the surgery that was scheduled for Friday the 15Th. The surgery they are going to preform was a bronch to check the airway and the implantation of something called an intrathecal delivery device or in other words a type of port o cath that will be placed in his spine and deliver elaprase the enzyme he already gets weekly into his spinal fluid with the hope that it will enters his brain from there helping to reduce the build up of gags in his brain if this works it will slow or stop the progression in his brain from the disease.
We got to the hospital about 6 a.m. Easton didn't want to be there the entire hospital is empty and he's screaming bloody murder which of course is echoing through all the hallways and I'm standing there wondering if I should go ahead and check in or wait for James who went to park the car finally I decided that the noise was to much and checked him in he actually calmed down and before we knew it we were in the surgery waiting room we were the first ones there so no waiting. They took him back just after 7:30 a.m. they let me go back into the operating room with him which was very nice for him he has really had a lot of anxiety with the new nurses you can tell that he doesn't trust them. Even with something as routine as accessing his port which he's had done a hundred times he was very nervous and crying until he realized that the nurse knew what she was doing. So they dressed me in a white surgery suit and cap and I walked back and was there till he was asleep. Shortly after the pulminologists came and found me and James and told us that they were finished with the bronch which is a test where they take a fiber optic camera and look really closely at the airway they can also intubate him a lot easier this way so it causes less stress on his airway and in turn hopefully little or no swelling. They told us that he does have a little cobblestone type build up at the top of his airway and some pebbling through the trachea which was so minimal that they didn't even see it on the way down they noticed the trachea build up on the way back out. They also noticed that his adenoids were growing back between the upper airway and the adenoids they wondered if he had any problems with acid reflux me and James have questioned acid reflux since Easton was born and he has been on and off of medicine for it. So I guess when we get home he'll go back on the prevacid for the long hall. Then about and hour after that the Neurosurgeon Dr. Perry came and told us that he was done with the surgery and that Easton done really well and everything went smoothly. Which was a big relief for everyone involved with this process. So now he has a little scar on his side and then another little one on the small of his back both are about and inch long they say. We also found out that not only will Easton be the first person in the world to receive elaprase intrathecally but he will also be the first person to have this particular device implanted for enzyme replacement so its kinda scary.
He came out of surgery and didn't even cry just sat there waiting for me and was really calm until about 9 that night and then we started in with crying every time he moved and wanting his dad who had gone back to the hotel for the night. But every time he moved he would cry out my back my back then he would find a comfortable position and relax till he moved again then it would start all over. Plus he was drinking like a fish so of course he had soaking diaper after diaper that had to be changed and this was the worst if you had to touch him to raise his legs at all to get the diaper he would scream. Needless to say it was a very long night but gratefully we were the only people on the unit that night so we had the whole place to ourselves. They discharged us in the morning and as sonnas he seen his dad he all the sudden stopped hurting as bad then we got in the car and headed for the hotel and when he realized that we weren't going to the hospital he walked into the room and grabbed his toys and was so happy but as soon as the pain meds wear off he start crying so every 4 hours he's getting a dose at least for the next couple of days then we'll start trying just tylenol. I'm sure the next time I come which is the first week in February he is going to freak out when we go to the hospital until he trusts the nurses aren't going to hurt him he'll probably have fits. We do go back on Thursday for a little physical and then we get to go home for a week but during that week we'll be in the hospital with Weston having his surgery. And Camilles knee swelled back up even with the new anti inflammatory meds they put her on so she'll get a joint injections on the 29Th now if we can keep Kaylee from giving us grief we'll be on the mend (knock on wood.)