Thanksgiving at Houston Children's Hospital


We're at Children's Houston. Expecting Benjamin's subcutaneous medicine by courier, (which is how it's always delivered, being an experimental and very rare medication,) imagine our dismay when Shannon opened the package, only to discover NO medication and only supplies! Digging deeper, we found the packing slip - for another patient in California!

Now, this is a huge problem. Ben's medicine metabolizes out of the bloodstream after only 4 hours. We were now in an emergency.

Shannon was immediately back on the phone to the courier and the hospital. As the correct shipment was now lost; the nearest supply of Benjamin's medicine, Remodulin, was in Houston. We would need to re-establish drug delivery by IV as soon as possible. We just needed to get in the car and go. NOW.

A supply of his meds couldn't be delivered sooner because they were short-staffed for the holidays; the pharmacist wasn't taking any more orders. What?! Shannon was crying silently.

We kept our "game faces on" to reassure Benjamin - and each other - that we were OK; we had a 4-hour window to get to Houston.
Shannon was grabbing her "go bag" as she spoke to Benjamin's medical team, telling us they would expect us soon. Benjamin was already grabbing his backpack, and jumped into the studio to tell me, "We have to go, Grandma!"

We packed Grandpa into the front seat as my navigator. Benjamin climbed into the back seat, and Shannon behind me. We slipped into the stream of fast-moving holiday traffic headed south. Taking just one pit stop, we made good time, checking into the ER by 1:20 am. About a two-hour drive.

I can't tell you how brave Benjamin is when he's faced with unknown faces coming towards him with the tools for inserting an IV on the back of his right hand. Those two very young nurses were wonderful. They intently chased down a good vein until it finally found its target. It's not a quick procedure. He didn't even wiggle. He told them it hurt! He kept still. They kept going, and they got it!

With the medicine now securely on board again, we tried to get some rest in our stiff ER chairs. It was not really possible. Ben kept chattering with all the pretty nurses. He loves his nurses. Finally, at 6:00 am, they brought us into a beautiful corner room in the ICU overlooking downtown Houston.

Our seasoned hospital veteran, Benjamin, charmed all of his new medical team, and introductions were made all around as he settled into his new room. Though everyone was sad that our planned Thanksgiving had to be tabled, we relaxed knowing Ben was safe, and in the best of hands.

Shannon lowered the blinds, the nurses found extra blankets and pillows for us, we turned off the lights, and we fell asleep instantly.

We're safe. The plan is that Dan will sign for the new delivery when it arrives at the house sometime late tonight, (about 10 pm, just like the failed delivery from the night before, ) and when that's safely accomplished, we'll be able to drive back home, refill his subcutaneous medication cartridge, and get back to normal. We're thankful everything is working out.

All that's left is resting up for the late-night drive ahead, and bringing family and friends into the loop.
Happy Thanksgiving!

#makeawishfoundation #bryantx #houstonchildrens