This was eighth set of scope and biopsies. They've become fairly routine. Every few months, we introduce new foods, and then follow up with scopes and biopsies to see if there are any eosinophils (evidence of a reaction to what he has been eating). This go-round, we did not introduce any new foods. In the past, Eli had been find with eating blue berries. Then, one day, he came to us and said that he did not want to eat them anymore. This was probably around October 2013. And this was a first. I don't remember him ever coming to us like this before. He told us that blue berries hurt and he did not want to eat them anymore. Eli was almost 5 at the time and, in our opinions, old enough to tell us when something was going on. So, we removed blue berries from his diet. (We do occasionally offer them to him, but he still refuses them.) Even though we removed the blue berries, we continued to see signs that Eli was having a flare. He had a horrible cough. He had dark "allergy shiners" that teachers, therapists, etc. were noticing and commenting on. His eczema was horrible on his legs and hands. We just weren't comfortable with introducing a new food to his diet while he was having all these symptoms.
So, on Wednesday, March 5, Eli went in for Scope and Biopsy #8. The results: no eosinophils, but esophagitis. This basically means that he has inflammation and irritation in his esophagus. He also had yet another yeast infection in his esophagus. So he was prescribed a 21-day round of steroids for that. Also, while talking to all the nurses, doctors and anesthesiologists before the procedure, we discovered that Eli had actually had an anaphylactic reaction to a medication when he had his procedure in August 2012. After that particular procedure, Eli's face and neck/throat were very swollen and he had coughed so hard, he popped the blood vessels in his face. At this procedure in march, the anesthesiologist discovered that they had accidentally used a medication with egg, causing the anaphylactic reaction. We're just grateful we were at this particular hospital, where they were able to handle the reaction appropriately.
The yeast infections seem to be caused by Eli being on too many antibiotics. With Eli's compromised immune system, Eli gets sick very often and very easily. I should probably go back to the week between the appointments and procedures....
After returning to Lubbock after the kid's appointments and preparing to return to Fort Worth for procedures, both kids seemed to have colds. I HAD to have them well for their procedures the following week. So, I took them to their pediatrician, fully expecting it to be allergies or a mild cold. They tested both kids.... and Eli came back with Flu - Type A..... FOR THE THIRD TIME SINCE DECEMBER!!! Eli and Ella both are unable to get the flu shot because of the egg in it. The pediatrician actually took the test around to other doctors in the office to have them confirm it because they simply couldn't believe it was positive for the same strand for the third time! All he had was the sniffles! The pediatrician believed he was on the tail end of it, so she did not prescribe Tamiflu, but sent Eli home, to stay out of school the remainder of the week. That was on Tuesday.
Wednesday morning, Eli woke up vomiting. He wouldn't eat. He wouldn't drink. He would go into the restroom, but was unable to urinate. At one point, he came out of the bathroom, buck naked. I asked him if he was okay and what he needed. Eli looked at me, with a blank stare on his face, then looked around, shrugged his shoulders and walked off. This was, obviously, not normal. We tried running Gatorade through his g-tube, but did not see any results. So... it was off to the emergency room. They ended up admitting him Wednesday night and discharged him Friday evening. They believe that the flu just hit him too hard and caused him to become too dehydrated for his little body to handle it. Thankfully, he was still able to have his procedure the following week.
Fast forward to today, March 28 (Ella's First Birthday)... we have just finished the steroid for the yeast infection in his esophagus... and started a 10-day round of antibiotics for an ear infection. He's such a trooper!
Now, on to Ella!
This was her first procedure. It never gets easier; even with it being Eli's eighth. Then combine that with Ella's first.... talk about a nervous wreck!! But, as always, Cook Children's Hospital in Fort Worth was AMAZING!!! Ella was first on the list and Eli was third. So, once Eli arrived for pre-op, the put both of them in the same room, with made them (and us) very happy.
On top of having the upper GI scope and biopsies, Ella was also having a pH probe done. Since she was very young, Ella has always had horrible reflux and has sounded like she was aspirating. Medication has yet to help. The pH probe has a sensor on the end of it; it goes up the nose and down, into the esophagus and is supposed to record data for 24 hours.Note, I said SUPPOSED..... Ella, who we've since nicknamed "Hurricane Ella" managed to reach her little hand passed the tape and RIP the probe out of her nose after about 6-7 hours. This is a before pic. You can obviously see how displeased she is!
The probe was an outpatient procedure, so we were at the hotel when she ripped it out. I can honestly say, Fort Worth drivers were INCREDIBLY nice. I flipped my emergency flashers on and made my way to the Cook Children's Emergency Room. Other drivers were so courteous to let me go through traffic. Unfortunately, nothing could be done about the probe. It has to be placed under sedation and it was too risky to try sedating Ella again, twice in one day, and after eating and drinking some. So, we are still hopeful that some results can be found; Otherwise, we will have to complete the probe again in a few weeks. The doctor also ordered a stool sample. He wanted to see how (and if) her body was absorbing fats and sugars. We are still awaiting those results.
As for the biopsy results, they were the same as Eli's: no presence of eosinophils, but esophagitis. So, we are still very careful with what we introduce into Ella's diet, while also trying to introduce a variety of textures, consistencies and flavors (not an easy thing to do!).
So, now we wait. We wait for the other test results. We wait for the next appointment. We wait to see how both kids react to the foods we introduce to their diets. We've become quite accustomed to this waiting game.
We continue to thank everyone for their prayers and concerns. Adam and I have been blessed with some pretty amazing kids and we cherish the adventures we have with them as we enjoy the good and learn from the not-so-good!
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