Day: Monday, August 18, 2008

4:22 p.m.

Suzy Taylor Oakley Crohn's disease, family, health, medical

Bruce and I drove away from the back door of the hospital at 4:22 p.m. That’s 5 1/2 hours after the doc said he could go home.

It’s 6:30 p.m., and I have dropped off his prescriptions, filled the car with gas (can’t expect these lower prices to last forever!), gone back to the store and picked up his new meds and a few soft foods, and I’m back home ready to work for the rest of the evening. My two busiest days at work are Tuesday and Wednesday, so please pray for my strength and endurance. Now that Bruce is home, I have to actually go to the office the rest of the week. I’m sooooo tired.

Aack!

Suzy Taylor Oakley Crohn's disease, health, medical

The doc was in at 10:45 this morning and said Bruce could go home. At 1:30 I said to Bruce, “Gee, it’s taking them forever. They haven’t even removed your port yet.” He reminded me that last time he didn’t go home until 7 p.m., but I reminded HIM that the doc didn’t give that order until 4 p.m.

At 3:30 today, I went and asked a nurse what is the average wait time for a discharge to be processed, and she said it depends on when the discharge nurse sees the order.

She checked on it and discovered that Bruce’s chart had been put back in the rack and no one had seen the discharge order!

Aackkkkk!

Tonight I will let you know what time we actually got to leave this place. (Too bad we can’t get them to deduct a few thousand off our bill because of this. Believe me, I’ve tried to get charges reduced because of hospital incompetence. It’s a losing battle.)

In the interest of fairness, I should say that overall we have been treated well here. We know these things happen, but we are so ready to get home. Our furbabies will be happy to see Bruce, and I will be glad to have him there with me tonight.

Woohoo!

Suzy Taylor Oakley Crohn's disease, health, medical

The doc was just here. He wants to skip the Humira today, send Bruce home and try him on the new drug, Cimzia. That will require letters, insurance approvals and ordering, plus we’ll have to visit the doc’s office for the injections about once a month. We did the Humira injections at home by ourselves, but that will not be the case with Cimzia. Let’s pray that the new medication works. Of course Bruce will also be on his two maintenance drugs (which he has taken for nearly 10 years), plus steroids and antibiotics for a while.

The hospital staff still has to come by and take the port out of his chest (where he’s been getting all the medicine and nutrition) and do all the discharge paperwork, so it may be this afternoon before we leave, but things are looking up.

Thanks for the prayers, but please keep them coming.

Monday morning hospital update

Suzy Taylor Oakley Crohn's disease, health, medical

Factoids from the beginning of Week 2 in the hospital:

  • It’s 10:15 a.m., and still no word on the Humira.
  • The doc said yesterday that he would be in around 11 a.m. today. I will update you if there’s anything to tell (maybe that he will discharge Bruce if all goes well with the Humira???).
  • Bruce’s last bag of IV food will run out in the next hour or two, and he’ll probably be off of all IVs after that. It’s a sign they’re getting ready to kick him out. That doesn’t guarantee he’ll go home today, but they’re weaning him off stuff …

The challenge once we’re home will be to keep his weight up. I have trouble getting him to eat at home. When I call him from work, the last thing I usually say is, “Eat!” Left unsupervised, he would starve to death. I’ve often said, “I live to eat, and Bruce eats to live.” That crazy skinny man!

I don’t get it. Do you?