Well, the beach trip was a flop.  More than a flop: a failure combined with more complications that a chinese finger trap!

We debated even going due to the windy forecast, but decided we both just wanted a day at the beach.  Apparently, it wasn’t in God’s plans for us.  We did get down there in good time, and got to get some things done that needed to be done for our Over Sand Vehicle permit we were getting on the jeep.  We got those things done, then quickly stopped by the local Walmart to pick up an item or two.

While there, we had to flush Kevin’s J feeding tube after the feeding.  Something was stuck.  If you remember from our first week home, this happened to us before.  So, we forced and forced, and nothing moved.  But then something did-and this time it wasn’t what we wanted.  There is now a break between the J/G barrier of his feeding tube.  Ugh.

We placed a call to our home care nurse, and she said to just visit the ER when we got back to Lancaster.  So, we attempted to go fish, at least on the pier since it was very windy conditions at Assateague, but Kevin was just too exhausted by the time we got there.  Plus, we were both just bummed and worried about the feeding tube situation.

We drove back and went to the local ER and, after about 3 hours, were told we had to take care of it with the original surgeon that put in the feeding tube.  UGH.  What is an ER for then??  Frustration.

After about 5 other phone calls between Johns Hopkins on call, local Gastroenterology on call, and so on, we still had little answers and went to bed.

This morning, I finally got a hold of the nurse at Johns Hopkins with the cardio-thoracic team that put in Kevin’s feeding tube.  She is going to make sure our insurance approves us going to Johns Hopkins for this specific procedure, and then we’ll head down to JH at some point to either get the tube fixed or just replaced.  In the meantime, we’re allowed to do feedings and things.

Just an absolutely frustrating setback.  Today we were supposed to meet with the local Oncologist, and now we don’t know that it will happen.  Pray that I can get a very important errand run (meeting someone at 12:30) before we have to go down.  If I can’t, it just creates another headache.

Pray that we have calm to get through this, and that it will be a simple and PAINLESS procedure for Kevin.  He’s very frustrated and not feeling super well either.

Thanks for lifting us up….