Hope for the best, but prepare for the worst

Mike, LeAnne, Christopher (middle, white shirt), Ryan, and Michael

Auntie was successful at nursing herself and the boys back to health, so within a few days we were all back together at home.  Finally, all the chicks were back in the nest.  Michael and Ryan had a great time with Auntie (except for the being sick part), but they were glad to be back to what was familiar- their rooms, their toys, their parents. 

I tried to explain to them that they needed to be VERY careful around their little brother's feeding tube.  I told them that it could come out easily.  If it did, then that meant we had to go back to the hospital.  They nodded their heads like they understood, but toddlers are by nature very busy and forgetful.  We had quite a few scary moments and close calls.

Baby with tube taped to face

The tube did come out from time to time over the next few weeks.  We made several trips to the hospital to have it replaced.  We became regulars at the emergency room which actually made for less paperwork and waiting.  Every time we walked in, the nurse immediately was on the phone to the x-ray department to let them know we were back. 

It felt like we were always living "an emergency" of some sort.  It never failed.  Just when you were about to sit down for a nice family dinner, Christopher's tube would come out.  We'd shovel some food in, throw the rest in the refrigerator, and off to the hospital we'd go.

Life had become so unpredictable.  It was difficult trying to juggle child care, housekeeping, grocery shopping, and all the other stuff of life.  That's when I came up with one idea to make things a little bit easier on myself.  I packed suitcases for each one of us and kept them in the car.  That way I was always ready.  If I needed to, I could drop the kids and all their stuff off at my mom's house and head for the hospital.  If we were admitted for some reason, I had my bags packed too.

It worked great, and it came in handy on more than one occasion.  I lived by that old adage, "hope for the best, but prepare for the worst."  It was about as prepared as I could get.  Nothing was for sure anymore.  You just never knew when things would go wrong. 

As the weeks went by, we realized that the tube down his nose was working as far as the feedings were concerned, but it was fraught with problems.  The number one problem was, of course, keeping the feeding tube down in his intestine, but the tape across his face was also a problem.  Christopher was born with sensitive skin.  The tape irritated the skin on his face, so we tried taping the tube to different areas on his face.  We even tried different types of tape.  Then he started to develop tape infections and had to be put on antibiotics.  Not only did infection start to become a concern, but his exposure to radiation became an even bigger one.  Each time the tube came out, he had to go back under x-ray to have it put back in.  The doctors started to become concerned that radiation exposure could cause other health problems.

Sometimes it seems like you just can't win.  You solve one problem but create another one in the process.  We had found a way to feed him, but it was definitely not a perfect system.  I began to wonder if there was a better way.  How do people do this long term?  Can you do this long term?  I knew we couldn't do it this way long term.  I made an appointment with the GI doctor to discuss my concerns. 

Then it happened.  The tube came out again.  We did what we always did.  We loaded the kids in the car, dropped them off at my mom's house, and took Christopher to the hospital.  Once in the x-ray department we met with some resistance.  The radiologist had reviewed Christopher's chart.  He noted how much radiation Christopher had received, and he flat out refused to put the tube back in!  I tried to tell him that Christopher couldn't live without it, but he told me that it was just getting too dangerous.  Now what do we do? 

I started to get pretty worked up, and I felt my inner momma bear start to roar inside me.  I demanded that he call the surgeon and the GI doctor and come up with a plan.  I explained to him that I just couldn't take him home like this.  I had NO way to feed him.  I understood his concerns, and I shared them, but they had to come up with another solution.  Doing nothing was NOT an option. 

The radiologist called the other doctors.  I could hear them yelling at one another on the phone.  I knew both sides had valid arguments and concerns.  We needed to do something.  There had to be a better way.  In the end they decided to put the tube back in and have us come back to the hospital the next day for an appointment with the GI doctor to discuss the options. 

With the tube back in and the feedings up and running again, we headed for home.  We were worried and frustrated, but at least we were going home for a good nights sleep.  Well, a night at home anyway.  We weren't able to sleep much between caring for Christopher and trying to figure out what to do.   It was hard to know what to advocate for.  Neither one of us had any medical training.  We wanted to help our son, but at this point we didn't even know how.

If you have never accepted Jesus Christ as your Lord and Savior, you can pray like this:

More tomorrow...