Some tough stuff

I will never forget the day my husband called me from the hospital.  I had gone home for a few days to spend some time with Mason.  I was at his football game when the phone rang.  Every time someone called me from the hospital I would get a pit in my stomach.  I can still feel it when I think back to that day over 2 years ago.  I could tell by the sound of Trevor's voice it wasn't good.  He told me the doctor who had done Keean's PEG surgery came to talk to him about some of the tests they were running on Keean's GI tract.  For a long time I honestly thought they had ruled out any of the serious causes of Keean not being able to absorb nutrients and being so sick (we had been there for 5 weeks so I thought we ruled out everything bad), so the news I received from my husband that day hit me hard.  The doctor told Trevor that he believed Keean had one of 3 things going on.  1. We were just dealing with severe allergies and reflux, 2. Micro villus inclusion or 3. Auto Immune Enteropathy. 
The last 2 words probably don't mean much to those of you who have never had to know what they mean.  And if you haven't, be very thankful!  These are things that I had NO CLUE even existed until the day my husband called me.  I had never in my life heard of these words.  They were foreign to me and if I had it my way, I would have kept it that way.  I didn't want to learn about all these things, but here I was.......sitting on the sidelines at my sons football game learning things I still don't want to know about.  I immediately started bawling and I didn't even know why.  I hadn't researched what they meant yet.  I just remember asking Trevor, "What does this mean?" And Trevor responding, "I don't know, but it doesn't sound good." 
My plan to spend a few days with Mason were quickly put on hold and I was on my way back to the cities as soon as his game was over.  I had to get back to the hospital and I had to learn more.  One of my favorite GI doctors told me he was going to quit telling me what anything was called because he didn't want me to do my own research.  He would say, "Dr. Google is not your friend."  He was so very right, but I couldn't help myself.  I wanted to know everything.  I wanted to know what we were possibly dealing with and I wanted to know NOW.  We had been waiting for approximately 3 months to figure out what was going on with my baby and the fact that they were testing him for things I had never heard of, I had to learn more.  It's funny how for so long I prayed and prayed for answers, for something....anything...to give me answers so we could help him.  I wanted to know what it was called and I wanted to know how to fix it.  BUT when I heard these things, I didn't want to know anymore.  I wanted to continue our journey having no clue what was wrong with the hopes that he could eventually grow out of it.  I hoped and prayed with everything I had in me that it was as simple as allergies.  This was still an option.  And I was trying really really really hard to stay positive, but my mind couldn't help but travel to the dark places that could be our reality.
Microvillus Inclusion (for those of you who prefer not to visit Dr. Google) in a very non-scientific kind of way means your GI tract does not work at all.  Your intestines don't and can't absorb nutrients on their own and requires TPN (IV nutrition) for life.  Like I mentioned before TPN is very hard on the liver.  The life expectancy of this when I researched 2 years ago was approximately 3 years old. 
Auto immune enteropathy is where your immune system thinks your GI tract is foreign and attacks it which causes it to not function properly.  This is the lesser of the 2 evils, but is a very challenging disease.  Children who have this spend a lot of time missing school and in the hospital because, in order to keep it under control, they use immune suppressants.  Because of this, your immune system is down and makes a child more susceptible to getting sick......really sick.  These kids don't grow well and depending on the severity of it some may also be dependent on TPN (IV nutrition). Auto Immune Enteropathy is very rare....or appears rare...maybe because the testing for it is complicated.  It's a blood test, but can come back a false negative, a false positive or can be inconclusive.  It's prognosis is dependent on how severe the presentation of the disease.

I hope this all makes sense.  I'm trying to explain it in a way that was easier for me to understand.  IT was a lot to wrap my head around.   All I really heard and read was the prognosis of these diseases, the possible TPN dependency and how sick some of the kids were that already had a diagnosis.  I remember laying in Keean's hospital room sick to my stomach and crying .....a lot.  I felt alone and confused and lost and scared.  I didn't want to talk to anyone because I didn't know what to say.  I just wanted to hold my baby and pray and hope that these tests came back negative.  Call me a pessimist, but I couldn't escape the dark place my mind would wander to.  I had only had Keean in my life for 3 short months and I couldn't imagine life without him. 
I remember when we told the kids about the tests we were waiting for.  They told us the tests would take 5-7 days, so we thought we should fill the kids in on some of the things that we were waiting for so they could ask questions and not be so confused about my random emotional break downs.  I remember Trevor made reservations at a local water park about 30 minutes from Children's Hospital.  We were going to get away from the hospital and spend some time with the big kids.  I also remember going up to our hotel room and throwing myself on the bed and having a complete break down.  I cried so hard I thought I was going to quit breathing. I remember my husband holding me and telling me that we would get through whatever we had thrown at us.  That there was a purpose and that we still had the ability to hope.  I remember him telling me that we would have to make the best out of whatever was thrown at us.  I remember wishing I could be as positive as him....as hopeful....as calm and as strong.  I couldn't stop crying.  I couldn't get the sick feeling out of my stomach and I couldn't stop thinking about the "what-ifs".  I had so many conflicting thoughts going on.  I wanted to remain strong and positive, I wanted to put on a happy face and put on a show for the big kids pretending that everything was fine, but I couldn't.  No matter how hard I tried, I just couldn't do anything.  I didn't want to be anywhere but with my baby and I didn't want to talk to anyone until those test results came back.  I was traveling to a dark place.  It was almost like I didn't want to be happy until I knew everything was going to be ok.  I can't explain how hard it is to have these out of control feelings.....I know I could have handled things differently, but in the moment there was no other way for me to cope.  It was hard for me to talk to people who had no idea what it felt like to be waiting on such life changing news.  I wanted to find people who understood.  It wasn't that I didn't appreciate everyone around me reaching out, sending notes, messages, coming to visit, etc.  it was that I needed to know I wasn't alone.  I wanted to find people out there that had kids going through similar things.  (Not that I want other people to go through what I was, but I knew there had to be).  I started researching things online.  I connected with other parents who had children with both Microvillus Inclusion and Auto Immune Enteropathy.  I actually was able to connect with a mom who was also waiting the results of her daughters AIE (Auto Immune Enteropathy) test. (apparently her daughter and Keean's tests were batched together and we got our results at the same time).  I started to feel a little better knowing that I had people to talk to, people who understood where I was, who could tell me what to expect and to tell me more of the truths of what we could be dealing with versus Dr. Google who chooses to point out all the bad stuff. It was nice to connect with people who I could vent to and who I knew just "got it".  I love my family and friends with all my heart, but at this point in my life I needed those people.  I needed these complete strangers to help me through one of the toughest times of my life. 
Along with these perfect strangers, I relied on the nurses who worked with Keean to keep my emotions in check.  I remember one of my favorite nurses up there telling me not to worry.  She was so determined that Keean wasn't a sick baby.  She said she knew it sounded funny, because she knows he is sick, but she said he isn't sick like some of the other babies she sees.  She said she would be shocked if he had something serious, and really thought he had something that he would get over and grow out of.  Although, she probably shouldn't have gotten my hopes up, she sure made me feel better.  Her words allowed me to sleep better at night.  She had been a nurse longer than I had been alive so I trusted her.  There was something about her that just made me feel better.  I'm pretty sure some of the nurses who work up there had some kind of major in psychology too.  They should have been paid extra to be my therapist.  I promise there were days I felt like I belonged in the mental health unit.  There were days I had no idea what to do with myself and the nurses helped me through those.....and so did those complete strangers I have yet to meet. 
They told us the test results would take 5-7 days.  Well.....they forgot to mention that the Microvillus Inclusion test took 5-7 days.....the AIE test took 8-10 weeks.  That's a huge difference...especially when you are waiting for something so important.  I remember wanting to fly to Philadelphia and wait patiently next to the lab techs as they waited for the results to come back.  I think I may have threatened it a few times. 
Thankfully the lesser of the 2 evils was the one that took longer.....we got the results of the Microvillus Inclusion test on September 14.  This is the one that if it was positive, Keean would most likely need a intestinal transplant.  This was the one with the 3 year life expectancy.  I remember our favorite Hospitalist at Children's stopped in to say hello.  She actually wasn't even working with Keean that week, but saw the results and came to talk to us.  No one had actually told us the news until she stopped in.  Apparently, each doctor assumed someone else told us....so she broke the news to us that his test came back NEGATIVE!!!!  I remember sitting next to Trevor on the couch in our room, our favorite hospitalist was sitting on the rocking chair shocked that no one had said anything to us yet and we both started tearing up.  Trevor and I hugged each other and then the hospitalist.  I'm pretty sure we hugged everyone that came into our room.  We were so extremely happy, we had to share the love with everyone involved in Keean's care.  Yes, there was still a test result waiting out there, but the fact that this one came back negative made it easier to breathe.