We just returned home last night from another trip to Fort Worth for appointments for the kids. We've gone from a 30 minute doctors visit with occasional procedures with Eli, to an all day or two-day trip with appointments and procedures and lab work, etc..... Eli had his second appointment Wednesday morning with Dr. Pfaff in the Pulmonology Clinic. We are still working to figure out what the best route of treatment is for Eli. It is difficult because of the overlap with his cough variant asthma and the symptoms of his EoE. The changes in weather (which happen quite often in West Texas) or an allergy flair can set off his asthma symptoms. However, Dr. P said that, all things considered, Eli seems to be doing well. We'll have to wait to see what his next GI scope and biopsies show, but otherwise, Dr. P is okay with us waiting 6 months to return for a follow-up. We have a fairly comprehensive Asthma Management Plan with meds, rescue inhalers and steroids, so that helps so much with managing his symptoms and being prepared for a "worse case scenario".
Wednesday afternoon was dedicated to both kids seeing Dr. Osuntokun in Gastroenterology. We've been so anxious, nervous and excited for this appointment. It was Ella's second appointment; we've been slowly introducing a very limited, carefully selected array of foods. However, she has still been visibly reacting to something. She has had the notorious "allergy shiners" like Eli gets when he is "flairing"/reacting, as well as eczema on her arms and legs. These are signs Eli had as a baby, but we didn't know then that they were related to food allergies. Anyway, Ella has also been having horrible reflux. Even though she is on meds, they don't seem to be controlling it. She has had several times that you can hear her spitting up or "refluxing", but nothing comes out; Then she starts to gasp for air and her eyes fill with tears. We're fairly sure that she is aspirating. It's pretty impossible to NOT compare our experiences with Ella to our experiences with Eli. When Eli was a baby, it seemed like we were doing lab work every time we turned around. With Ella, she hasn't had lab work since she was a newborn! So, Dr. O ordered a full panel of lab work; CBC, check for Celiacs, anemia, etc. We are hoping to get those results in about a week.
Dr. O also said that we need to go ahead and scope Ella to check for EoE and any damage to her esophagus. At the time of her scope, they will also be placing an Impedence PH Probe. This is similar to an NG tube, in that it will go up her nose and down into her esophagus. It has a little sensor on the end of it that will monitor any reflux and aspiration and record the results. It will have to stay in for 24-hours, so they will discharge us to the hotel after the scope, then Adam and I will be responsible for removing it the next day and taking it back to the hospital to get the results. While we're somewhat excited to do these procedures, simply for the fact of getting the results, we're also very nervous to have Ella sedated for procedures before she is a year old. It's also going to be very difficult to have the PH probe in for 24 hours and keeping her from pulling it out. But, getting these answers will definitely help us with planning and preparing for a course of action for Ella!
Since Ella will be one in about a month and a half, we will also be transitioning her from Elecare for Infants to Elecare Jr. Vanilla, which is the same formula Eli is on. It will be kind of nice to have them on the same formula instead of constantly worrying about giving them the wrong one! =)
Eli will also be having an upper GI scope and biopsies at the same time as Ella. It has been August of 2013 since Eli's last scope. Although we have not added anything new to his diet, he also seems to be reacting to something; allergy shiners, cough, eczema... the whole 9 yards. So, the scope will help us to know if it is something in his diet or just environmental allergies. If it is something in his diet, we will have to work to remove things to see if he improves symptomatically, as well as scoping clean. It kind of feels like we are starting over at square one. While we were at the appointment, Dr. O also changed out Eli's G-button since it hadn't been done in a while. One of these days, Adam and I will have to get comfortable enough to do it.
So.... In two weeks, right after Eli's 5th Birthday, we will be heading back to Fort Worth for these procedures for the kids. Our anxiety level is already through the roof. I don't think it ever gets easier, even though this will be Eli's eighth scope. Then, add Ella's first scope AND the PH Probe on top of that.... we're pretty nervous. However, we are still so excited to be moving in a good direction, getting answers and getting to a point of knowing where to go from here!
As always, prayers are greatly appreciated and we will post updates as we get them!!!
