Back and forth to from the ER

Well I knew John Hopkins was going to be a great hospital and knew we would have an opportunity to get to know the staff there, I was sure hoping we would not have the opportunity to get to know them as well as we already are.

It seems that Ellie is requiring a bit more visits in and out of the ER at JHCH than anticipated due to the difference in travel here verses what we had in Colorado. Also we do not have the Special Care Clinic (SCC) here that we had there where all her care was met at. In CO within the SCC we were able to avoid many ER visits simply because the SCC has the care set up only for family with children like Corbyn and Ellie.

On the days we needed to be seen that day we were fit into the schedule in clinic instead of running to the ER unless it was after hours. Because of this set up many days we would go in for an appointment and plan to stay 4-6 hours (the same time we would have been there for the ER). If we were having respiratory issues we would not leave until we had been seen by the pulmonary team as well and had a PFT. While in the ER the respiratory team would have come, the PFT and other tests would not have been available. So while the setup made for intense and very long days, the comprehensive team approach made sure the whole child's needs were met.

Here we now live over an hour away from JHCH, our local peds clinic is only open 4 days full time and Thursdays everything here on base is closed by 1pm. By 4:30 everything medical is shutting down unless we at John Hopkins, or heading to the ER. While we have amazing local peds dr's the specialty dr's are the ones we have to drive for a distance for.

Since moving here to MD we have been dealing with increasing GI issues that are continuing to get worse. Right now we are just biding our time and trying to make it through the next 3 1/2 weeks when she has surgery scheduled to fix her laryngeal cleft. According to the notes from the TCH dr's the cleft does extend beyond her vocal cords, we just do not know how far beyond at this point. From my understand this means she has at least a grade 2 cleft. This would also explain her severe aspiration issues that have never truly resolved.

During our last ENT appointment and nasal scope the dr thought she saw signs of laryngomalacia when she was trying to determine the laryngeal cleft extent. So during the surgery they are doing both hard and soft bronchoscopies as the hard and soft allow access to different parts of the throat and allow for different tests. When younger Ellie did have laryngomalacia, tracheomalacia, and bronchial malacia.

They are also doing biopsies through an upper endoscopy to test for Eosinophilic Esophagitis, basically a severe allergy to foods that causes the esophagus to swell due to an over active immune system and white blood cells attacking the body. They are going to test her for other metabolic disorders as well. Hopefully once these tests are done and the results are back we will have a much better understanding of what is going on with her little body. Why we are dealing with a bowel ileus, very poor GI and bowel motility. Why we are unable right now to move her formula through her g-tube at a very high rate without her being in pain and getting severely constipated without high doses of Miralax on a daily basis.

We do not know what answers we will get at this point, if we will get any, or if we will stay within the idiopathic and unknown collection of medical diagnosis realm...