Trying to diagnose Kennady’s sicknesses is so hard because she can’t actually tell us what is going on.  Over the years, we have learned a lot from her non-verbal communication: facial expressions, emotions, body language, etc.  She communicates so much through laughing, crying and her eyes.  You can look into her eyes and get a pretty good picture of what is going on inside. A couple of weeks ago, she started having coughing spells that would become intense.  They would come and go and often be accompanied with throwing up.  Honestly, we have become used to a lot of episodes like this so it is tough to know when it is a sign of something more significant.  They just kept coming and escalating.  One of our nurses pushed us to go ahead and take her into the doctor and that turned out to be a really good decision.

I (Robin) had taken a few days off and gone on a mini-sabbatical out to Big Bend National Park in west Texas (7.5 hours away).  I was really excited about getting away from civilization and cell phone coverage.  I took my kayak and mountain bike and was ready to really relax and explore (at the same time).  I arrived Friday night, had a bite to eat, set up a tent, and took in an incredible west Texas desert sunset.  The next day I took my kayak to the Santa Elena Canyon on the Rio Grande for kayaking and fishing.  What an incredible view.  I paddled way up stream away from people and enjoyed the tranquility of babbling water and warm sunshine.

I actually got out of the boat on the Mexican side (don’t tell anyone) for some international travel.  I was there for like 5 minutes and then got back in the boat for a nice float back to the truck.  I slowly made my way back to camp through the gorgeous Chisos Mountains, ate a nice dinner with some PromiseLand folks that now live out there, and then took in another sunset.  Just before bed, I got a call from Erica.  She had taken Kennady to the ER.

Erica and I talked through the whole situation.  We had no idea what was going on. The doctors were going to do some tests and scans and try to diagnose the situation.  I was troubled. What should I do? Drive back?  Erica told me to hang on and wait for the test results.   So, I went to bed.  Around 4am I woke up and checked my phone.  Erica had called a couple times and sent messages.  The phone signal in Big Bend is terrible which is one of the main reasons I wanted to go there.  In this case, it was quite frustrating. She said that the doctor determined that Kennady’s bowels were not working and there was a good chance that she would need surgery.  However, the doctor said that there was a possibility surgery wasn’t needed if the bowels would start working on their own.  Erica is so amazing. She said, “We don’t need you here right now.  Go on a mountain bike ride first thing in the morning and then come back.” So, that is what I did.

I got back to Austin on Sunday evening around 9:30pm and drove straight to Dell Children’s hospital.  We talked a bit and then Erica gathered her things to go home.  On long stays like this at the hospital we usually take 24 hour shifts.  Thankfully, our boys were with my parents and are actually old enough to stay on their own if we need them to. (they really enjoy being alone at the house without parents there)  We have several things that make these stays work: eat good, exercise, take a walk in the woods, sleep in, rest, repeat.  We try to get work wedged in when we can.

Once we got into a hospital room, we started the journey towards recovery. The doctors really wanted to avoid surgery because it is really invasive and could have complications. There was a chance that things could start working again if the small intestines had an ileus (where they simply ‘fall asleep’).  However, if there was an actual blockage, surgery would be required.  There was no real way of knowing so we had to simply wait it out.  By Wednesday morning, the doctors were not seeing the progress needed and decided to go forward with the surgery.  Things went quickly from there.  Within a couple of hours she was in pre-op. Doctors and nurses were coming and going. We were signing all kinds of papers.  They wheeled her back and then mom and dad waited patiently for 2 or 3 hours.  They finally called us back to talk with the surgeon.  Such a weird feeling. They take you to a little room with nothing on the walls except a small dry erase board. There are a couple of chairs.  It looks sort of like an interrogation room. They always call you back before the surgeon is done so you have to wait…again.  What will the surgeon say? What went good? What went bad?

He finally walked in and said that things went really well.  There was one significant blockage were scar tissue from a previous surgery had created a kink in her intestines.  While in there he saw that her appendix did not look healthy so we went ahead and removed it.   He also repaired a hernia.  Wow! Three surgeries for the price of one!!

Kennady was moved to the pediatric ICU to spend the first night.  She began to heal quickly and was moved the next day to a regular room.

THE MESS
There are times during these hospital stays that we get physically exhausted because of long nights with little sleep and lots of interruptions.  Some days are tough because we have to make BIG decisions.  So much emotion is expended to exist in these moments.  We spend days wondering if the treatment will work and have absolutely zero control over the outcome.  I had to cancel my trip to Big Bend.  Our daughter was cut open and had her insides worked on.  We are spending so many hours away from our family. We are spending a lot more money on food.  Things are falling through the cracks at work.  Other people in the church need help and I simply can’t get to them.

THE MIRACLE
In the midst of the difficulty, we are BLOWN away by our support system.  EVERY time that Kennady goes through one of these difficult situations it is clear that we are not alone. God shows up with a daily allotment of grace.   His grace looks like this: We have incredible grandparents. We have unbelievable church family.  Our friends never cease to amaze us.  We feel surges of strength and peace.  We have recognized that our marriage gets better. Erica and I actually have fun. We are a part of a special program with the state of Texas where Kennady’s medical expenses are 100% covered.  We meet new friends. Doctors and Nurses do an incredible job.

Thank you, Jesus.  Only you can make a miracle out of my mess.

If anyone wants to go  back to Big Bend, let me know.  I have some unfinished business out there.