It's All About Trust

There are times in life when one must slow down and regroup. Just one month ago we marked the one year anniversary of Sydney's diagnosis. She isn't thrilled about having to revisit all of those memories. She keeps telling me that she wants to feel "normal". I wish I could help her feel normal, but her new normal is that of a diabetic. The days of being able to eat, drink, and exercise without thinking of blood sugars are now over.

When Ryan was diagnosed with Severe Combined Immunodeficiency Syndrome (SCID), I was a young mother that was very naive. Walking into the unknown with him was not a problem because I didn't know any different. I remember very clearly asking the nurses how long all of 'this' would go on. Their answer was "a very long time." This 'very long time' virtually ended for us on February 28th 2003 when we got the news that Ryan's immune system had completely reconstituted and he no longer needed medications.

In time we resumed a 'normal' life. We introduced him into the outside world, wiping carts down with clorox wipes and getting crazy looks and comments from those around us. We were ahead of our time.

It is dangerous to get into a comfortable way of life. One year ago we were comfortable with our little family of four. We were stripped of that comfort when Sydney was diagnosed with T1D. Days turned into weeks, and weeks turned into months. While I do not claim to be an expert on diabetes, I am surely still learning, I began to be comfortable with our newfound life.

At the end of March Ryan told me that he was coming down with a cold. His symptoms began on March 22nd - scratchy throat, run down body. By the following Tuesday Ryan had a full blown cough. The cough was different than most coughs so I took him in to the Dr. We were sent home with some cough syrup with the instructions to return to the office if symptoms worsened. By Friday March 29 Ryan's cough sounded like that of 'whooping cough'.  I waited to take him in because I feared that if I did I would be told that it hadn't been 10 days so it was likely just the same cold and we would need to keep watching it. We kept him home from church on Sunday and on Monday morning I had heard enough of that horrific cough. I called the doctor and they had an appointment at 3pm that afternoon with our regular doctor, or I could take him in right that and be seen by the other doctor in the office. I opted for the earlier appointment as Ryan's cough was taking his breath away.

When we arrived at the doctor's office I requested that they please do a Pertussis test on him. I was declined that test as they said 'everyone else was negative' so they offered an antibiotic that would treat the cough. Ryan's symptoms did not get better. They worsened. On April 15th we returned to the Dr for his well-child check. Because it was a well-child check our Dr could not do the diagnostic tests (thanks US Government, you're the best). We returned on April 16th and the tests were performed. Ryan was diagnosed with pneumonia, and pertussis. Yay us. He was then placed on 2 antibiotics, and an inhaler steroid, with albuterol as needed for shortness of breath.

On May 16th Brett took Ryan back to the Dr for a follow-up visit. His chest X-ray was repeated and I requested PFTs. His spirometry was lower than expected so we were referred to a pulmonologist. I had sent Brett to the Dr with the instruction to request PFTs, so it was no surprise that we were referred out to a specialist.

On June 14th we took Ryan to Primary Children's to the pulmonologist for testing. What we found shocked all of us. Ryan's lungs were now functioning at 67%. Ryan has since had several more tests - CT scan, echocardiogram, and most recently an open lung biopsy and bronchoscopy. We have yet to receive the results from the lung biopsy, those will take several days to return. Our future is now unknown with our little guy.  I have refrained from putting this out there because Ryan wanted to keep things quiet. I have found though that even when you don't want your life 'out there', if you tell the right person, thinking that your confidence will be kept, you'll be surprised by how quickly news spreads. Ryan is now ready to share his story. He's scared. He's afraid that his lungs might hurt. He doesn't know how to feel. Sydney is scared.

I have many emotions. We have a history with the hospital in Salt Lake that is not a pleasant history. Without getting into details, I'll just say I feel like the doctors in Salt Lake dropped the ball. Ten years ago a radiologist noted 18 times that Ryan had signs of chronic lung disease. Imagine my surprise when I learned of these findings just 2 short months ago when I requested Ryan's medical records so that we could try to piece his medical history together. There are so many unanswered questions. So many.

Ryan has been a blessing in my life. He has taught me so many things. It was through Ryan that I turned to my Father-in-Heaven and learned that the Atonement of Jesus Christ is a healing power, not just for sinners, but for those who have broken hearts and broken bodies.

Several weeks ago I woke up early one morning deep in thought. I had an impression that my Heavenly Father missed me. It was a strange feeling, but I had the thought that while it is not my time to return to Him, He misses me and I need to turn to Him. I have not established the habits that I need to, but the only guidance I can receive is through Him who created all things. It is through Him that we will get through this trial in our lives. It's all about trust.