06 January 2018

Moving along well - 12:47pm post

Bennett started responding to yesterday's enema around midnight so the team started him on GoLightly, which is used to clean out the colon.

At 6am this morning, Bennett was given a belly X-ray.  The X-ray showed marked improvement so Bennett's 8am enema was cancelled.  Surgery has also been taken off the table.

About an hour ago, three Gastroenterology med students, 2 residents, 2 fellows and an attending came into our room to give us an update.  The attending explained that his X-ray looks so well they believe we are on the downhill slide.

Yesterday's x-ray (left) vs today's x-ray (right); black insight the belly is trapped air between the stool

Bennett has been given the green light to start clear liquids.  Once he has nothing in his bowels, they will let him start eating again.  They have started enzymes (without food).  Since Bennett's bowels being cleaned out is what we are waiting on, there is a good chance that we may be discharged tomorrow.

The attending said part of the complication with Bennett's situation is that he didn't present as a classic DIOS case.  DIOS cases usually show symptoms happen quickly (within a few days).  But, for Bennett, he was presenting symptoms several weeks ago.  So, the team felt very confused on whether or not his issues were a stricture, constipation or DIOS.

Bennett is feeling better now that his belly isn't full.  Thankfully, Bennett has felt good most of the time here.

Bennett did share his thoughts this morning when Brian took Oliver and Avonlea downstairs.  He told me, "I was telling Daddy last night about how I'm scared about the future.  I'm scared because I don't know what's going to happen with CF."

I just listened but I wanted to grab him close and reveal to him: that's the *exact* feeling I'm feeling right now, Bennett.

He went on, "It's like you're at home and then you go to the hospital they say you can't eat and you have an enema.  The hardest part of the future is not knowing.  I feel like, it's a God can see it on the top.  But we can only see down at the bottom."

We prayed last night, all five of before Oliver, Avonlea and I left to sleep at my sister's house.  We prayed that God would give Bennett peace, that the treatments would work...and that Bennett wouldn't have surgery or an enema the next morning.  Part of me cringed because I didn't want him to be heartbroken if God didn't answer his prayer.

But Bennett reminded me this morning that God had heard his prayer.

Brian told me that he shared that when Bennett told him how he felt scared about the future with CF that Brian responded to him, "even though we don't know what's going to happen in future, we know that God sees the future and is already there preparing good things for us."  He said he told him, "That's why we can wake up each day and look forward to it because each day is a gift that God gives us, it's a present we can unwrap."

I'll be honest, I haven't enjoyed unwrapping the days where CF is involved.  And hearing Bennett say that he is scared of the future is hard to hear because I know he doesn't even know what statistics say the future holds with CF.  He only knows his short life experience with it.

But it's good to hear him talk about his fears.  And it's good to hear my husband remind me God is there.  And it's good to remember that yesterday is over.  Tomorrow has not come.  Today is what we have.  And today is looking pretty good.

Hoping this is all over soon,

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