We need to take a look....

Tanner had an endoscopy this morning to have a look inside his esophagus. He has Eosinophilic Esophagitis. He has been doing well, he hasn't been on any medicine for over 6 months and he hasn't been having any symptoms. The problem with this disease is that there is no way to know for sure how he is doing without doing a scope. Today we were asked to participate in a research study for another way to test the eosinophilic cells.

I could NOT sleep last night. I don't know why I felt nervous. It IS a surgical procedure and he does have to be put under anesthesia, but we've done this before...at least three times. I think part of the reason is that the hospital is in a new location and I had never been there so I was anxious about getting up and being there on time. I'm always anxious about traffic when we have to drive to Chicago, but I've done it enough that I don't think that was the problem.

Whatever it was, I didn't fall asleep until after 11pm {even though I had been in bed since 10pm}. I woke up at 4:15am and COULD NOT go back to sleep. I was planning on getting up at 5am, so by 4:30 I realized that it wasn't even worth trying any more.

I got up and got ready. We left our house about 5:45 and had no problems getting downtown...until we got to the turn that should have taken us directly to the hospital and IT WAS CLOSED. {apparently it's closed every morning because it causes a traffic backup}. Thank goodness I had my GPS and I was able to get new directions, but it was a little crazy for a few minutes...while I had to get all the way over to the other side of a 3 lane road and avoid several one way roads.

We arrived at the hospital and went to the research department.

This is actually when we left, but the picture from this morning isn't a great picture.

The study that we were involved in was called a String Test. The idea is that you swallow a pill that is connected to a string. The string stays outside of his mouth and as the pill dissolves the remainder of the string unravels inside his esophagus. The string picks up proteins that are inside the esophagus and they compare the string test results with the endoscopy results to see how accurate they are. Today he had to leave the string inside his esophagus for an hour and then they remove it. {I didn't watch that part, yuck!}

He did great. He even swallowed the pill without water. {crazy boy}. He says it felt weird. But he did it!

As a thank you for participating in the study, he received a $20 gift card to Target. {which he really liked!}

After the string study we went to the OR to get ready for the endoscopy. We were taken back to our room quickly, but then we had to wait FOREVER!

Luckily, because we didn't know how long the string study would take and because we knew we would be at the hospital longer than normal, we took plenty to keep us busy. I'm SO glad because we had to wait for several hours before they came to get him for surgery. I got several pages scrapbooked and he got his video gaming time in.

They came and took him back for surgery about 11:15am. The procedure is pretty quick and I knew that I wouldn't have much time....but I was starving! I did have breakfast, but that was at 5:30 this morning. I quickly went to the cafeteria and had some lunch. I had enough time to walk around for a few minutes and see the beautiful new hospital.

I love the garden. I LOVE the rainbow marbles. SO cool. They had water running through them.

I loved the chapel. The stain glass was so pretty.

And the firetruck is pretty cool too. Tanner didn't want to go back and see it. ;(

The only thing I didn't think of was having to carry ALL that stuff that we brought with us...by the time I got back upstairs, my arms were killing!

I had literally JUST sat down in the waiting room when the Dr. came out to talk to me. Everything went well. The procedure went well. The Dr. did say that there is some visible evidence of the EE inside of the esophagus. {they have never seen the visible evidence before}.  Some of it is scar tissue from the long term effects of him having EE. They will do several biopsies and we will get the results in about a week.

It was only a few minutes later that they told me he was awake. {so NOT like his mamma, it takes me forever to wake up}. He was still pretty groggy when I went back, but he was doing well and was ready for a Popsicle.

I don't think he even knew I was taking this picture, so he couldn't protest!

He started waking up more and had a couple little cups of Italian Ice, which he loved. After about 30-40 minutes, he told me he was ready to go home. {I think he mostly wanted the IV out of his hand}.

Ok. Let's go home bud, I've been here long enough!

Of course, he felt good enough to want to stop at Target on the way home. {silly boy}. He got a couple things, but his favorite was a huge bag of gummy bears. He LOVES them, but I never let him buy them....so I had to give in after everything he had to do today.

I hate that we have to go through all of this. I hate that we have to keep having all these tests and scopes. I hate that we have to live with this. BUT, I am SO grateful that we have such an wonderful hospital so close to us. I am SO grateful that he is covered by insurance and we can continue to pursue helping him get better. I am SO grateful that he is doing better. I am SO grateful that it's not anything worse and that for the most part he is a normal healthy teenage boy.

the results....

Tanner's Dr. called me last week. Unfortunately the steroids he's been taking have not made any difference....in fact his numbers are higher than the last scope in November. We think the acid reflux medicine he was last fall actually helped him better than the steroid so we will be changing him back to that medicine. He will see the Dr. in April {after tax season is over} and then will do some blood work to make sure his vitamin and mineral levels are all ok because the acid reflux medicine can make him prone to break a bone and have low potassium and magnesium. We are sad that the steroid didn't work, but we are hopeful that the medicine will help him not have as many symptoms.

He seems like he's been doing better. He doesn't complain as much and I think just knowing what he has is helping us manage it. He is growing and gaining weight so the Dr. is not worried about his diet at this point. We are so grateful for modern medicine and for living so close to Children's Hospital. We love the Dr.s there.

PS: I told Jason the results over the phone because I wasn't home and apparently he didn't tell Tanner so he is just now finding out as I was typing this.....oops, Sorry Bud. We didn't mean to leave you in the dark.

We are getting pretty good at this.....

{unfortunately!}

Tanner had another GI Scope this morning....we had to get up early and go down to the hospital, luckily we were ahead of the traffic and the snow {we are supposed to have a storm starting this afternoon}....then we had a LOT of waiting time....I tried to take a few pictures of Tanner, but he wasn't really having it today...he tried everything to avoid it, but I did get a few of us...

Doesn't he look happy?

Once we got back into the room, we had more waiting.....and he was pretty bored with all the waiting...he really wanted to just take a nap! {he usually gets to play with his 3DS or his I-pod, but he's grounded from them right now, so he had to just be bored}

I really like this picture, he was trying to avoid me taking his picture so he put the mask over the camera and this is what I got. pretty cool.

His procedure was SUPER FAST. He was only back there for about 40 minutes total before they were telling me he was done. He had a hard time waking up and he's had a really sore throat this time. We will know in about a week if the steroids have been helping...and what we are going to do next.

For now, we are just going to go take a nap!!