Can not believe its been over a year

I cannot believe it has been over a year since I updated this blog! So much has happened over the last year. In July 2011 Tanner had an endoscopy and the results were not good. He had 80+ eos and furrowing (scar tissue) in his esophagus. The foods we were trialing at the time were Turkey, potato and strawberries. We decided that taking these foods away was not an option as that is all Tanner will eat. The only other option was to try steroids. The GI put him on slurry of budesonide (pulmicort respules like used for people with asthma) mixed with 8 packets of splenda. The idea behind this is that the mixture would coat his esophagus and neutralize the eosinophils

After 6 weeks we had a follow up with the GI and I was excited to report that Tanner has told me he feels better than he ever has. He thought it was normal for your tummy to always hurt. Well the GI threw a curve ball at me when he said well we are going to stop the steroid and when/if he starts to feel sick again we will restart them. When I asked about trialing new foods he informed me that was not going to happen and he recommends we remove the turkey, potato and strawberries. When I expressed concern that all he will not eat anything else the GI said “well then we will have to talk about a feeding tube” Tanner broke down crying and we left the office.

Since then we have changed GIs and we love our new Dr. at our first visit he was concerned that Tanner had not gained any weight in 18 months. He is not under weight but if he continues to get taller and not put on any weight it won’t be long before he is underweight. Also since Tanner started 1^st grade he refuses to drink his formula at school so he was not getting the nutrition he needed. When he asked if we have ever thought about a feeding tube Tanner instantly got the look of fear and sadness in his eyes. The Dr. sat down next to him on his level and said “Tanner you know if you end up getting a tube it is not a punishment, it’s not because you did something wrong. This instantly calmed Tanner down. We left with the plan of trying a Prilosec for 6 weeks and then scoping because many of Tanners symptoms sounded like they could be reflux.

A few days later Blue and I were talking and decided that we are tired of every meal being a fight to get Tanner to eat something. Not to mention the fight to get him to drink enough Elecare. We sat Tanner down and talked to him about a feeding tube. He was a little upset at first and then I told him “wouldn’t it be nice to not have to drink Elecare anymore?” and he liked that idea. After about 20 minutes he came to me and said ok mom I am ready for a feeding tube.

I called the GI the next day and he wanted to do an NG tube (nasal/gastric tube goes through the nose and into the stomach) temporarily first to get some nutrition in him while we are waiting for an appointment with the surgeon. Tanner was admitted to the hospital to have the NG inserted and to train me on how to replace and care for it. We have an appointment with the surgeon to have a G-tube placed (the more permanent feeding tube surgically placed through the abdomen into the stomach.

I am so proud of how well Tanner took to having the tube. His friend Nate (who also has EoE and had the NG tube now has the Gtube) goes to his school. He came in Tanners classroom and he and Tanner gave a presentation on the NG tube and answered all the kid's questions. I think this really helped the other kids understand and not tease him. He has not had any kids make fun of him. They ask a lot of questions because they are naturally curious. I find that more adults give him funny looks than kids do.

Since Tanner got the NG tube he is a different child. He has so much energy it drives me crazy. His face is filling out and the dark circles under his eyes are gone. I have no doubt that we made the right decision.
Thanks for sticking around and reading all this I know it is very long. I will try to update you all more often.