Thanksgiving at Houston Children's Hospital

Thanksgiving Dinner, Houston ChildrensWe're at Children's Houston. We expected Benjamin's subcutaneous medicine to be delivered to our home by courier, (which is how it's always delivered, being a 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 had become a huge problem. Ben's medicine metabolizes out of the bloodstream after only 4 hours. That means, there's no medicine left in his body after four hours. We were now in an emergency. This was a culmination of a week of multiple incorrect deliveries. We did our part, but the box didn't contain his medicine - again.

Of course, Shannon always orders them on a strict schedule, but it's up to the carrier to be sure they reach our house, even during holidays. 

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 were instructed to get in the car and go; NOW.
4thanksgiving room houston childrensA supply of his meds couldn't be delivered sooner because they were short-staffed for the holidays; and 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, which is normally doable in under a couple of hours. 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 two-hours in busy Thanksgiving-eve traffic.

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. His two very young nurses were wonderful with him. They intently chased down a good vein until it finally found its target. It's not a quick or easy procedure. But all through it, he didn't even wiggle. He told them it hurt! But he didn't pull away, he always kept very still. They kept trying, and they finally 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 until the covers were pulled up to hin chin. He loves all his kind nurses. Finally, at 6:00 am, they brought us into a beautiful corner room in the ICU overlooking downtown Houston we were able to sort ourselves into reclining chairs.

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 Bbenjamin finally asleep23was 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 Benjamin 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, Benjamin may be released to go back home, refill his subcutaneous medication cartridge waiting for him, and we'll all get back to normal. We're thankful everything to this point is working out.

All that's left is resting up for the late-night drive ahead, and bringing family and friends into the loop. We plan a celebratory Thanksgiving for making it through all of this, after we're safely back home and can catch up on our sleep.

Happy Thanksgiving!

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