Yes, the hospital...again

Since my last post, I've been waiting for Eden's next appointment to deal with her belly troubles. If you read my blog posts you know (and if you don't there are a ton) we've been trying to figure out Eden's belly troubles for about 2 years now. We've been to infectious disease specialists, nepherologist, a TON of blood tests, ultra sounds and an x-ray. We would get a lead and then no answers.

We saw a new doctor on Monday, a pediatric gastroenterologist. We received test results from blood work done during April vacation that showed a possible gluten allergy (more specifically Celiacs disease) (CD) you can read a little back story about this here. The doctor explained that the only true way to tell if a person has Celiac disease is to take biopsies of the upper small intestines through an endoscopy.

That day the nurse called and scheduled an upper endoscopy for Thursday. She would again have to be put under general anesthesia for this procedure. It was scheduled late in the afternoon and she would have to go the whole day without food and not have anything but clear fluids that day. 

I knew this time was going to be a little different than her previous surgery at the end of February. She would know what was coming, in our case because of Eden's fantastic memory ignorance is always bliss. We brought her to the hospital that afternoon and Eden clearly knew something was up but thankfully we were checking-in into a different part of the hospital.

Eden was her super friendly, cute, and super talkative self as we registered and went upstairs to the endoscopy center where she again talked the nurse's ear off about something. They showed us to a hospital room where we met this guy. Eden was so excited to have him and the nurse told her that he would be there to hug if she got scared. The nurse we had was super awesome and listened when I explained about Eden's anxiety about masks and needles. She made sure to answer all of Eden's questions even if there were things she was scared about they explained everything.  He came home with us and she named him Ted (really original right?) and he sleeps with her and he's a regular part of the family now.

The nurse went right to work taking Eden's blood pressure (her favorite part of ANY doctors visits) and even gave her the disposable blood pressure cuff to take home with her. They tucked her in bed gave her some awesome hospital slippers!

Cute hospital feet!

Once they had taken all her vital signs, got her hair in a pony tail and she got changed into a super cool hospital night gown. We were ready for the difficult part. After hearing about Eden's anxieties the nurse talked to the anesthesiologist about getting something to relax her before her procedure. Once the medicine was ordered and brought in, things got a little crazy. Eden actually tried to run out of the hospital room and hide but we closed the door just in time. It took lots of calming her down, her crying, trying to lock herself in the bathroom, and some real creative thinking but we got her to take her medicine. About 15 minutes later this is where she was.

Chilling with Dad's Ipod watching a movie

I ended up going in the procedure room with her cuddling in bed with her. We watched a movie while the anesthesiologist put the tube with the anesthesia next to her face. Before I knew it she was almost asleep and they put the mask on her face. It's the scariest thing sometimes watching your kid being put under anesthesia because their muscles contract (not like a seizure more like they try to get out of the situation)and they look like they are freaking out but it's actually a normal reaction to the gas. After seeing it the first time I was more prepared. I was lead out of the room and we waited. It didn't take too long and she was back in the room. 

She slept for a little while and once her blood pressure came up back to normal the nurse asked if we wanted her IV taken out before she woke up. I told her definitely and that was the reason she freaked out when she woke up at the hospital before. She took it right out and Eden woke right up without an issue. She started talking immediately and it was kind of funny because it was like she was drunk. Slurring her words and talking slow but she came out of it quickly. 

The doctor came in and explained the procedure she performed and gave us pictures of her esophagus, stomach and the beginning part of the small intestine. She said everything looked normal, and they took a lot of biopsies because that is the only way they can tell if she has Celiacs Disease is from testing the biopsies. We should get the results in about 6-7 days. 

Fast-forward 5 days to today...

I had not gotten around to finishing the post above so I'm just adding on the end. I received a call from the Gastroenerologist today with the biopsy results and she said that some of them came back positive for Celiacs Disease. (I know your asking why some of them are positive right?) She explained that is why they take so many biopsies because some parts of the intestines can test positive and have the disease and some don't so more biopsies more accurate a picture. This makes the biopsies partially inconclusive.

The next step is the choice, because of her positive blood work and positive biopsies there are two things we can do. First is genetic testing, celiacs is a genetically passed down disease. We can test to see if she has this gene or not. The problem is that if you have the gene it may not mean you have the disease because it can stay dormant in your system. So, the test is for telling us if she may or may not get the disease not if she has it or not. The other thing is just to do the gluten free diet and recheck her blood in a couple months to see if the blood work changes and send us to a nutritionist to help us get started. 

We are probably going to just start the long process of changing our eating habits. We had done a lot of thinking about this the last month or so and it's worth a shot to make her feel better. It's going to be a difficult change but summer is coming and it's going to be much easier for us to eat healthier and change. I'll let you know how our family will deal with this as things change as we are huge fans of everything bread...

There are a lot of changes coming to Eden soon so check in often because two of her therapist/support people are leaving, school is ending, we have a new in-home, plus summer coming...watch out world!