It has taken me a week to sit down and write this entry. I think it is best that I took the extra time because hopefully I will write with a more positive outlook. A week ago I was not feeling all that positive.
Last Monday we had our first EoE Clinic appointment. (FYI, I am going to refer to eosinophilic esophagitis as EoE going forward instead of EE. EoE is now the proper abbreviation per our GI.) The purpose of the clinic appointment was to get everyone involved in Callie's care together at one time to collectively come up with the best solution to control her EoE. Last week the group included 8 people: our GI doctor (Dr. Enav), our allergist (Dr.Alpan), his assistant, two dietitians, two nurses, and a med student. It was a crowd.
First they checked her weight and height. She was up to 20lbs, 6oz and 30 1/4 inches!! This was a huge growth spurt and we were thrilled. They also let us know Callie's latest endoscopy and biopsy results looked great. She has completely healed! So we were happy to learn she has both grown and healed. All the efforts in the last 12 weeks have paid off. Then they advised due to her allergies we are going to have to introduce solids very slowly and carefully. Basically the plan is to introduce only 2 - 3 foods every 2 - 3 months. At the end of these periods Callie will need to have an endoscopy to check for any flare ups. If there are signs of a reaction, we eliminate the foods and try others. It is going to be a long, drawn out trial and error process. After the appointment it began to hit me what a big deal this is. This EoE is a chronic disease that is seemingly going to majorly impact Callie's life. Up until recently I did not really think much of it because an inflamed esophagus and some allergies seemed somewhat minor compared to infantile spasms and a brain disorder, but last week it hit me how hard it is going to be to get Callie on a "normal" diet.
I have many concerns. I feel frustrated that we are going to have to introduce everything so slowly and carefully. It seems like it is going to take forever for her to work up to the point that she can consume enough calories through food she is not allergic to. I really do not like how she is going to need a scope every 2 - 3 months which involves anesthesia. This can not be good for her little body! And it makes me sad to think about her possibly never being able to enjoy pizza or being able to relax and order anything off a menu at a restaurant, or travel and try new foods. Who knows if she will ever be able to do these things anyway, but I have to hope.
Because of how long it is going to take to introduce a variety of foods that will eventually make up a somewhat balanced diet, Dr. Enav estimated Callie will need a feeding tube for a minimum of 6 - 12 more months. He stressed minimum and I took this to mean she is going to need it for 12 months or longer. He said there is no medical reason why she can not keep the ng-tube for an extended period of time, but it is not practical. He strongly recommended a g-tube, but left it up to us to decide. It did not take long to determine she needs to get the g-tube. I certainly do not want it for her, but the ng-tube continues to be difficult to keep in place and requires her to be closely watched around the clock (including through the night while she is on a slow continuous feed). It is hard to imagine another year or more of this. Plus I am hoping she might have better success in feeding therapy if she does not have a tube down her throat. So I am currently working to schedule the procedure in August. We first have to meet with a surgeon. That appointment is now scheduled for July 15th.
I left last week's appointment feeling somewhat disappointed and overwhelmed by her EoE and what it means for her future, but like everything else we will take it one day/week/month at a time and everything will work out. Now that we have made the decision to proceed with the g-tube, I am looking forward to getting it and moving on with the implementation of her new diet. They drew blood for additional allergy testing last week and I am waiting for the results so that we know which food is safe to try first. Callie will be eating soon! It might only be applesauce for the next month, but she will be eating.
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