Our Stay at Lurie's

Since March 2nd we have been concerned about June's increasingly loud breathing. We first suspected it was caused by a virus, so we immediately started saline nebulizer treatments over the weekend. The next week our doctor called in an oral steroid and did a nasal swab for viruses, which came back negative. Later in the week, June was not improving so they upped the nebulizer treatments to albuterol. Her oxygen levels had also dropped to 90%, which is the lowest they like to see before they admit to the hospital. By the end of the week, she also had an inhalation steroid.

                                      

We continued to not see an improvement. She was not running a fever, but our pediatrician took an X-ray of June's lungs to make sure she did not have fluid in them, which could lead to pneumonia. Her X-ray came back fine so the next step was to head to the surgery team in Peoria to check out her surgery sites.

                                    

In Peoria, June had another upper GI study to check her surgery sites. The study didn't show any leaks, but they were concerned about the narrowing of her esophagus and a possible narrowing where the blockage in her small intestine was repaired. Since June had lost close to a pound in this two-week time period (dropping from 14 lbs. 8 oz. to 13 lbs. 10 oz.), they increased her feeds from six hours to eight as well as the amount she gets in an hour from 33 milliliters to 40. A week later we checked back in. June had gained some of the weight back to put her on the growth curve. The surgeon wanted to give her two more weeks to gain weight and look at her again. It seemed like June's breathing had quieted some, but really, we had just become use to it.

Last Sunday morning around one, I was awaken by June gagging and choking-she was gasping for air.mWhen I picked her up, she instantly threw up some saliva. We want to avoid the ER because of the exposure risk, so I called the on-call doctor to check in. He said that as long as I was comfortable caring for her, I should keep her at home as long as I could. At this point, June had thrown up more saliva or mucus and seemed able to breathe easier. I sat with her sleeping upright on me for the rest of the night so I could monitor her. On Sunday night, the same thing happened, only earlier in the night. Thankfully, Jason was off so we rotated staying up with her. Every night of the week, June continued to have these episodes.

On Thursday, our pediatrician referred us to Lurie's. We were scheduled for an appointment on Friday. After meeting with the doctor, she felt we should be admitted to run some tests on June and figure out what exactly was going on. We got to our room on the twentieth floor at about seven that evening. Over the weekend, June had some fluoroscopic  studies done on her tubes and X-Rays of her chest, airway and abdomen. From those, the doctors ruled out a narrowing of her esophagus causing the problem, but the studies did show significant acid reflux. They also sent a scope down her nose to look at her airway. From that scope, they decided to do a bronchoscopy today. It was a short procedure where they took a camera down June's airway. They also looked down her esophagus at her repair. From the X-rays and dye studies, they didn't think their was a leak or reformation of a TE Fistula but wanted to be sure.

The bronchoscopy confirmed that June has tracheomalacia, which means the airway collapses or closes so much that it makes it harder to breathe. Pressure on the airway from acid reflux can cause the airway to collapse more. They also found that June has some cysts on her airway from being on the ventilator for so long and so often. She will need to have those removed in a month to also relieve any pressure on her airway. At that point, we will also have more tests and pictures taken of her insides to see if the fistula repair in her small intestine is narrowing and if she may need another nissen to help control her acid reflux.

We are all worn out and ready to come home!