answers...(finally)

After what has been an extremely long, frustrating, and worrisome road, we finally have some answers about our little man and what is going on in his tiny little body.  And, we are ready to talk about it.  Read on for our long journey to get to this place of finding answers...

The road started in Minnesota with our hospital stay for RSV and continued as we made our return to Denver with multiple doctor visits and an emergency room stint.  We started to get a glimpse of some answers with a weekend hospital stay at the Children's Hospital here in March. 

At first this hospital stay seemed annoying to us. We went to what we thought was a routine check up with a lung specialist to follow up with Calvin's RSV and need for oxygen.  What they found from their check up was that Calvin's oxygen levels were low (even being on 1/2 a liter of oxygen), and decided to admit us to the hospital thinking, initially, that he had caught another bug.

*Most of us have oxygen levels between 90 and 100%.  When these levels get below 90%, doctors worry, especially in infants.  Calvin's levels since our return to Denver have been consistently between 80 and 89%.  

We had to spend the weekend in the hospital because all of the tests they wanted to run were not available due to us being there on a Saturday and Sunday. It got extremely frustrating (but also made us hopeful) to hear comments from all of the doctors and nurses like, "He looks too good to be in the hospital" or  "He's too happy to be sick" over and over. Monday finally came and Calvin had to endure three tests to rule out some very scary medical issues.

First was the SWEAT test, which tests for cystic fibrosis.  We didn't know a lot about this, but some quick research told us that people with this disease don't usually live past 30 years old.  It goes without saying that this was beyond scary.  It was the worst waiting for these results even though they assured us that they didn't believe this was what was going on with him.  


Next, he had an ECHO test to look at his heart.  Lastly, he had an upper GI Swallow test to make sure he was swallowing properly and his food was going to the right place and taking the correct path.  Again, they did not believe that there were issues with his ticker or the track his food was taking, but they needed to be able to rule all of these things out.  

Calvin was a champ, as usual, and we had a meeting with the Pulmonologist that evening to hear the results of all the tests. 

Going into this meeting, the worst case scenario in my head was that Calvin had NEHI and would be on oxygen for years.  Andy, however, had darker thoughts happening in his cranium.  His worst case scenario was that Calvin was going to die.  These inner thoughts came out gradually as we listened and asked questions of the doctor.  

The doc went through each test and told us the results, which were all negative.  Then, he continued with the facts that we knew about Calvin.  He said that with all of this information and the opinion of the leading doctor for NEHI in the world, they were leaning towards a diagnosis of NEHI.  

This is when our differing inner-most fears were revealed...I started crying and Andy started smiling.  My worst fears had come true and Andy's were pushed aside.  I continued to cry  most of that evening as Andy continued to celebrate, and how we shared the information with those close to us differed significantly.  If it wasn't already frustrating, it became increasingly harder for us to deal with each other's differing reactions until we finally said our actual thoughts out loud.  Only then could we begin to understand the other.  


Since that night and our discharge from the hospital, we have come a long way.  We began massive research about NEHI in order to start grasping what we were in for and begin to understand this disease that many knew very little about.  We continued seeing Calvin's pediatrician for weight checks, immunizations, and advice on helping him gain weight.  We counted the days until we were able to meet with the "expert" himself, Dr. Leland Fan.


When we finally met Dr. Fan, we had memorized his credentials, we had read numerous stories about him helping other families find answers when other doctors couldn't, and we had a list a mile long of questions with hope that he could answer them all and give us some peace of mind.  He blew our expectations out of the water when he sat with us for two hours (and would have spent more time if we weren't so overwhelmed) giving us information about NEHI and answering our questions.  

We still haven't gotten an official diagnosis, but we are getting closer.  Calvin had a cat scan and is scheduled for an infant breathing test in May.  Dr. Fan has called us personally to answer questions and give us test results.  We have the direct line to his nurse that we can call with questions, worries, or to help us with other hospital departments that we have to deal with.  I am pretty sure these kind of doctors and nurses are rare and we feel EXTREMELY lucky to have them in our corner.  

Some of you may be scratching your heads at this point and asking yourself, "So, what is NEHI?  I've heard of this NEHI..."

What NEHI is...

~an interstitial lung disease in children
~super rare (only 500 cases are known in the world)
~only recently been discovered (2005) by Dr. Fan
~rapid and difficult breathing
~low levels of oxygen
~could be genetic, but is unknown
~labored breathing can cause poor weight gain
~treatment includes a need for oxygen
~a child will grow out of the need for oxygen
~more susceptible to colds
~the leading doctor for NEHI is at Aurora Children's Hospital (right here in Colorado)!

*If you want to learn more about NEHI, you can go to this website.

No parent wants their child to be hurt or sick and we don't feel like that is what is happening with Calvin.  What we have is a healthy baby who just needs oxygen. We know what is going on with him now and we know what he needs.  There are no more unknowns. And we have the best care in the entire world (literally) in our backyard to watch over his progress and guide us through this journey.


When we made the choice to become parents, we didn't make that decision lightly. Yes, this is not what we expected when we made that decision.  But, if we have learned anything in the last year and a half, its that life throws you curve balls and you have to decide what you are going to do with them.  You can either run away and hide or you can make a conscious decision to face them head on.  Life has definitely thrown us more than our share of those pitches recently, but we aren't hiding.  We refuse to let them get us down.    


I know, there I go again...coming up with the positives with what seems like a more than difficult situation.  

Sure, we have moments of frustration and many more of worry.  We cry sometimes and we get angry other times.  There are other times where you may find us flashing our middle fingers in the air at the universe (privately, of course).  But, those are fleeting and, let's face it...I think the universe deserves it at this point!  But, at the end of the day, we are fighting back and moving on.  We have to, not only for ourselves, but for Calvin.  

In the end, if this is what the universe has in store for us, bring it on.  And if this is the face of NEHI, I think we will make it through, especially if we have each other to lean on.