Tilly’s trip to Boston Children’s

Back in July Tilly had a choking/aspiration episode that later led to retractions and labored breathing for weeks. It took two emergency room visits  and 7 apts at her peds office to finally get an ENT referral, we kept getting told her symptoms were croop or they were thinking it could be seizures at night causing her episodes. After evaluation and hearing wheezing in her throat they decided it was best to go in for surgery up at childrens hospital the next morning. Her bronchoscopy took much longer than anticipated and we later found out she had significant destats which required intubation, Albuterol, and Epi for her heart and they admitted her based on their findings. They didn’t find a foreign body but instead found significant pulmonary edema as well as compressions in her trachea both anterior and posterior. They also found between her er visit three days prior and her surgery she had picked up not only 6 lung viruses but also had staph and pneumonia. They had tested her previously for everything and came back completely clear of viruses. This was a huge indicator on how comprised her immune system has been. Because of all of the viruses they discharged Tilly the next morning and would do follow up testing outpatient at a later date. 

Since her surgery she has had a sedated ct, echo, and eeg to try to determine what is causing her compression and symptoms. Her ct did indicate a dialated pulmonary artery that she did not have in last years echo due to her being severely underweight. We are continuing to work with our local childrens hospital knowing that we will have a sleep study done and swallow study. 

After hearing about very similar cases and suspection  for a vascular ring we were advised it would be in tillys best interest to get a second opinion at Boston Children’s hospital. We got all of the records we could to them and they were able to expedite our case review at the vascular ring center. They did indicate they are suspicious of some issues of her esophagus as well as a vascular ring not fully being off the table. They have reassured us that if we get her down there for a triple scope, ct, and echo, they will be able to find the cause of of her compression with their more advanced imaging and doctors that specialize in these types of cases. 
Unfortunately the issue that comes up is insurance. Our current plan doesn’t have any out of network benefits meaning we can’t go out of state. Because we qualify for a life event that can purchase a secondary insurance plan this was what we originally intended to do. But speaking with a broker there aren’t any  policies in Washington that have any out of network benefits and an appeal will likely get denied and result in delayed care. 

After seeing tilly decline at night we feel inclined to try and get her evaluated and cared for as soon as possible. We are tentatively scheduled for November which is much quicker than we have been able to get in for other testing here in Washington. Some nights tilly does fine and only has a few o2 drops but other nights she is dipping into the 70’s throughout the night which is much lower than she was a few weeks ago. Our hopes are to catch the root cause of all of this and treat before her pulmonary artery issue become more severe and starts causing heart damage. We are asking for any help to help to try and help cover some of the cost of the out of pocket expenses we will be paying to get her testing done in Boston. With having to significantly scale down work for me and Xeriks big work season almost to an end covering these expenses is going to be really tough but wanting to make sure we are able to get the best care possible for T.