Diagnosis

Ruby Jane has been in the hospital for 7 days now. She was originally admitted for asthma because she was requiring oxygen to keep her oxygen saturation above 90%. (She was diagnosed with asthma as a baby) We figured she would be in the hospital a day or two, wean off the oxygen and go home, possibly even go home with oxygen. While there everyone was confused by her diagnosis of asthma because she coughs and doesn't wheeze. On day 5 when she still required 2 liter of oxygen to maintain her sats, her pediatrician decided maybe we should rule out some other options. They did another x-ray to make sure it wasn't pneumonia- it wasn't that. They did a heart echo to make sure there was no problem with the heart- it wasn't that. Then the doctor suggested a sweat chloride test to rule out cystic fibrosis. We would need to go to Primary Children's to run the test and my pediatrician wanted me to get in with a pulmonologist anyway and suggested we get transported up to Salt Lake. So on Tuesday, Ruby was transported by ambulance up to Primary Children's Hospital. We didn't get here until late in the afternoon, so we couldn't do the test that day. So early Wednesday morning they ran the sweat chloride test. The test was simple, they put gauze on the inside of the elbow then wrap it in saran wrap, then we warmed Ruby up with blankets and warmers for 30 minutes, then they remove the gauze and test it for how much chloride was in her sweat. Unfortunately, although it is an easy test we waited for 8 hours to get the results. When the doctor walked in with the results, suddenly 8 hours was way too fast. Now if I'm recalling correctly (I've received a lot of information today) a normal range is 40-60, so above 60 raises concerns. Ruby's results were 109 and 112 (each arm). So, Ruby's diagnosis has changed from asthma to cystic fibrosis. Not our best day. They are going to do the test again on Friday to double check. He told us to expect to be inpatient for at least 2 more weeks, they will do what is called a "Clean Out." It sounds less than fun, but Ruby has thus far been such a great little patient and constantly amazes me with her patience and bravery. I am feeling so blessed to have such great friends and family that have been helping my little family the last week and especially feel blessed to get to spend so much time with Ruby Duby.