Part 2

 

We came. We saw. We conquered. We traveled.

 

 

Usually I’ll go to San Diego to hang out with my parents if I want to unwind.

– Mario Lopez

 

 

Questions about the little guy? I suppose it wouldn’t be a faithful retelling of our adventure if I did not include out medical arrangements. If you have children medically inclined, I hope it is helpful. If not, I hope it is helpful, at least for perspective.

As a review, my son has a Broviac and feasts nightly on TPN (IV nutrition) through tubes and a medical pump. It puts him at risk for blood infections and dehydration in intense heat, but it keeps him alive so…worth it.

 

I packed two bags for each day of our trip (ex: “Tuesday morning,” “Tuesday evening”) and one extra day for a total of 14 bags, plus a dressing change supplies in a bag for his weekly dressing change. I put these in a nice storage box (12×8) that holds sheets in my laundry room along with his pump, a box of medical gloves and a bottle of hand sanitizer. I packed a First Aid kit: one side normal kid stuff with band-aids, the other side with g-tube stuff, clamps, and other things you find in the medical supply closet. Along with his medical pole, at the last minute, I grabbed a tray to best replicate how we do things at home.

We set up shop similarly to how it’s done at home. The little guy gets his own room. The three older kids share. The husband and I still get along. This is our “good-for-now” arrangement. No telling what the future will re-arrange. To go anywhere, we will require three rooms. Luckily, my godmother’s house had plenty of space to sleep comfortably.

 

Each day we went out with the corresponding weekday bag, except when we didn’t and I was glad I packed extra supplies in his emergency bag, that I had hand sanitizer in the First Aid Kit and knew a Park Ranger Station probably had medical gloves. They did…in their First Aid Kit. That’s a good idea.

 

 

There is little else to describe. Before we left, I wrote down the name of the nearest and best hospital in case there was an emergency. I made sure his pharmacy sent a travel packet to their branch in San Diego (easier to do this in-state than out-of-state). I rescheduled shipments so we would have a week’s supply to pack when we left. We always pack an extra day with us. Before loading, my husband reviews all the bags.

 

What could have been better? A better backup set in the emergency bag, Hydroseal for the beach, a swim diaper, a hat.

Letting myself generously apply spray sunscreen on the fair skinned boy was a relief. Changing plans to stay on the coast was a relief. Choosing to stay at the guest house rather than go out again was a relief.

 

Places I would recommend? Point Loma – oh so amazing. Permanently disabled patrons can get an Access Pass to the National Parks. This was new to me! We saved on parking.

 

 

Torrey Pines State Beach was wonderful. We parked by the sand. It was small, quiet and not too crowded. Mass at the Mission was beautiful. Lunch in Old Town was fun. Clam Chowder at Point Loma was delightful.

But the best moments were wrestling on the carpet with a John Wayne movie in the background, hearing shouts of delight at the bird, hold the arms of a child in the waves.

 

 

We are getting better at traveling, taking it in stride, and writing down lessons for next time.