Frustration, Frustration, Frustration.

Christopher did so awesome today with the overnight EEG, all the doctors rounding and visiting Gage to say good-bye. I felt bad for the kid though because he would no more get to nap and someone would wake him up. First to remove the EEG wires and second to put in the pH wire.

Our AWESOME ENT stopped by this a.m. before she boarded a plane to somewhere. Her plan continues to complain until she gets a sleep study. He's on a wait list. She said she will stop in Sunday to see us when she gets back.

They removed his EEG wires around 11 and so he was hooked up to it for about 20 hours. Dr. Nelson came in later and informed us that his EEG was normal. I freaked - in my head- WHAT!!! I mean I wanted to jump and celebrate, but at the same time, I was frustrated that it was saying that it was negative. He said since we had seen activity however, that he wasn't going to take him off the med, but switched him to a once a day one that doesnt have to have lab draws to regulate it. BONUS!

Jairren, my sister-in-law was with me and reassured me after Dr. Nelson left that it is not uncommon for EEGs to be normal in epileptics. I emailed a couple ladies through the Epilepsy Foundation I have met and asked them too. They both reiterated what Jairren said. The good part of it is that this gives us more hope for him growing out of them and that the apnea is not linked to a seizure. We will keep our appointment in Denver on June 6 with the epileptologist.

Then the pulmonologist that is on for the weekend came around and introduced himself. Was concerned again with the aspiration. Looked at my videos and then questioned what we were going to do about feeding him until we can get the possible cause figured out. It's refreshing that we are looking for a cause.

They are still talking g-button and whether he is refluxing too, so they are doing a test, that watches the pH in his esophagus to see if he's refluxing. We have to push a button for every little thing he does, so much so that i feel like I'm playing a video game. If you looked at pictures, it's the one that looks like a feeding tube, but it is indeed a test. He struggled with it at supper and eating and sounds kind of cruddy tonight.

The bad part about the pH test is that to keep him from pulling out the wires, he has to have elbow restraints. The funny part is watching him try to feed himself...i know horrible mom. He finally grabbed my hand so he could itch his nose and head. The pH wire stays in for 24 hours. :(

Jason and the big boys showed up around 6:30 and it was SO SO good to see them. Today was a frustrating day on all ends. It was Andrew's track and field day and I was mad I couldn't be there, but knew I was where I needed to be. Jason took videos and sent them to me and I cried with everyone.

When they arrived, Matthew went straight for me. Chris and I had hopped in the stroller and went for a walk and sat by the fountain/stream and watched the water. He eventually maneuvered himself to get his toes in it. Not sure we were supposed to, but like I told Jason...at least he didn't pee in it.

The big boys and I went out for supper at our favorite establishment...Jack and Mary's. Andrew ate and talked...surprise surprise...and Matt ate and snuggled...pretty much his norm. Matt wanted to come back to the hospital and sleep with me. I then took them to Cindy's for the night, which I'm worried will be hard on Matt because he just got here...but Jason is out there.

When I got back to the hospital, I heard a baby screaming, when I went in to the room, Jason and Chris were missing. I listened a little bit closer and sure enough, those were my baby's screams! His IV went bad and they were trying to restart it. It was a horrible feeling knowing that he was going through this and I wasn't there. I promised not to leave for that long again. Jason did good though. Even though he denied it, I could tell it bothered him.

After 4 sticks they couldn't get it and Tina (one of my favorites - her son has epilepsy, hypotonia and dysphagia...sound familiar?) called the physician who said to leave it out, but stated the inevitable...NG.

So that's where we are at...It sounds like after the pH test is done, the NG will be placed for feedings. I guess we have to...Jen has always said it will be her job to get him off of it.

Tonight he was up until after 11 bouncing back and forth from Jason and I, loving each one of us. He even showed his love by biting me - now I have a huge bruise and welt. Obviously he is sick of helping hold him down.

Mom, Dad, Michelle, Luke and Lily are coming down tomorrow and I can't wait. Yesterday, I would have given anything for my Mom to be here so I am looking forward to them. Jason's family has been popping in and out and I am very greatful, but nothing is better than having your own family and I'm dying for sister time.

The circles and few answers continue. I just finished talking with our nurse and it sounds like we will have a sleep study this weekend and then surgery Monday, and possible home Tuesday. It will all depend on what they figure out...We'll get there.