Surgery Date set

We had our consultation with the surgeon last week. He was a little apprehensive about the G-tube at first because Tanner's weight is in the 50th percentile, however after hearing our story and learning that Tanner has been formula dependent his whole life made him see the light. The bottom line is that Tanner will not drink the Elecare anymore and it will not take long before he falls off the growth chart. Tanner also gained 4 pounds in the month that he has had the NG Tube and he is doing so good. He has energy like I have not seen in a long time. G-Tube surgery and and endoscopy are scheduled for November 28th. He will also have an upper GI series, also known as a modified swallow study on November 2nd. He has never had a swallow study and I am a little nervous because he has to drink a berrium solution and I have no idea what is in it and how his body will react to it. I am also nervous about the swallow study because they will be giving him different thicknesses of the barrium and tanner has some sensory issues and it may be a real fight to get him to even put that in his mouth let alone swallow it.

I have some anxiety about the endoscopy for a few reasons. For one Tanner has been complaining about food getting stuck in his throat. This is a big red flag that he has more damage in his esophagus than before. Also Tanners GI is not available on the 28th to do the endoscopy and  I am not familiar with the GI that is going to do the procedure. I just don't like the idea of so many "cooks in the kitchen" so to speak.  I can not reschedule because Tanner really needs this surgery and endoscopy as soon as possible.

We also recently found out that the GI we love so much is moving to the east coast. I really do not like "Dr. Shopping" especially since once you see a Dr. at a practice they will not allow you to change to another in the same office. I think this is ridiculous. You should not be forced to stay with a Dr. you are not comfortable with. Our current GI has the same  views we did on quality of life and when we should change diet or add steroids. I hope he can refer us to someone with similar views.

We appriciate all your thoughts and prayers. Thank you for taking time to read this blog and stay up to date with what is going on with Tanner. It really does mean a lot to us.

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.