25 August, 2013

A holdover

The breathing treatments that they gave us seem to be working. Although they aren't really fixing the problem, they are finally letting him get some sleep at night. He has also started an extremely high dose of antibiotics while the docs continue to figure things out.

22 August, 2013

Follow up

No real answers yet. Robert is having difficulty sleeping at night and breathing due to the fluid in his lungs. Kasie is getting some short term meds that are supposed to help while this mess gets figured out.

19 August, 2013

Another hurdle

The transition from the end of summer to the beginning of the school year hasn't been all bad. Robert is excited to be back in school and Ben is beyond excited to be riding the bus and going to the same school as Robert.. more so the bus really. Kasie is enjoying some time with Allie doing whatever it is that they do while the boys and I are out doing the same.

That being said, we certainly haven't been without our concerns lately. We were getting frustrated with Robert's long persistent, maybe even chronic cough, and Kasie challenged the Oncology team about it. Her persistence lead to an appointment with a Pulmonologist who had instant concern. Robert had a CT scan on Friday to see if there was need for a scope, there was and he had his bronchoscopy today. The scope revealed that there is some sort of severe infection in Robert's lungs, that is causing him great difficulty in breathing. In fact while laying down under general anesthesia his lungs filled with fluid, causing a drastic sat drop/ crash and creating the need for a deeper intubation.

He is doing fine and is resting at home now. The doc says that the procedure likely agitated things in his lungs, giving him a rough couple days. What ever the infection is, it has remained in his system through countless rounds of high dose IV antibiotics, and daily chemo. They took samples of the infection so that they can accurately  diagnose it, and then specifically treat it. The fluid sacs appeared to be similar to those from Cystic Fibrosis, although they do not think that is the cause, it will be ruled out along with everything else. The Pulmonologist is very motivated to find the problem, and fix it. That's all we've been asking for, so we're grateful for the ally.

I'll share the results when we get them in a couple days.

-Bob

Please excuse any typos, created mobile and tired.