Denise has been admitted back into the hospital because she's nauseated and can't hold any food or meds down. She's in room 4514 and visiting hours are 11am-8pm (there's no rehab going on, so you won't be interrupting anything). Phone number to her room is 626-535-6716. Email her at
pullingfordenise@yahoo.com and I'll print it out on and read it to her.
I took Denise to Huntington's E.R. yesterday morning at 10am. She started vomiting the night before her discharge (Friday night), and was still vomiting the morning of discharge. This was thought to possibly be due to dinner not agreeing with her, the excitement & nervousness of going home, holiday rush, etc. During the ride home from the hospital (Saturday morning) she said she was nauseous. At home, she couldn't keep her food or her meds down at all, and was exceedingly tired (some of the 12 meds that she's on cause drowsiness). We were up much of the night Christmas Eve, trying to get her meds into her, cleaning her up, changing sheets, etc. I've never done laundry in the middle of the night on Christmas Eve before, and I hope to never have to do that again. By Christmas morning she was no better and the home care nurse and the doctor on call told us to go back to the hospital E.R. to get her anti-nausea, electrolytes, anti-seizure, and other meds administered via IV. More on the nausea issues below.
We were in the E.R. all Christmas day. I thought that Christmas would be slow in the E.R., but I was wrong. It was so crowded that people were on gurneys along the walls of the hallways. By the way, all the E.R. nurses were excellent! Even with the crowding and stress, they hustled and exhibited top-notch people skills. Though Denise catnapped most of the day, she was sad that she missed Christmas with the kids. Early on, a nurse said that it might be possible to get Denise filled up and back home the same day. But later on it became apparent that we wouldn't make it back home that day. Denise started crying when I told her that it looked like she would have to be in the hospital at least overnight. She said she didn't want to go back to the hospital; she wanted to go home even if she was throwing up all the time. At one point she said, "Just tell me if the doctors think I'm going to be in the hospital for the rest of my life." Every once in a while that horrible thought has oozed into my head, too.
She was finally admitted back into the hospital (regular room, not rehab) at 7pm. This was during the shift change, so it was another hour before I could really talk to anyone. Fortunately, her nurse last night remembered Denise from taking care of her shortly after the seizure. Icing on the cake (or frosting on the cake... take your pick) is that Denise really liked that nurse. Overall during Denise's hospital stay, I've felt like whenever there's been a change of venue and new people start taking care of her, it's taken a crisis event to get everyone to realize how much medical attention she needs. So I'm very glad for the nurse being familiar with Denise's case.
Well, we're left to find out why the nausea & vomiting started up on Friday night. It could be flu. It could be side effects of meds (though I wonder why this wasn't going on before, assuming she was on the same regimen of meds). With all the tubes, needles & hoses that have been in her, the healing & scarring may have caused an adhesion that's blocking the flow of food. Could be a few other things, too. They took Denise for an ultrasound and tonight Denise told me that they think there might be something wrong with her spleen. I haven't had the opportunity to catch the new doctor yet, but the spleen thing is old news. I believe that previous ultrasounds showed an enlarged or somehow abnormal spleen, but upon further examination turned out to be nothing of consequence. I also remember that at USC, one of the doctors said that Denise would get urso (bear bile) to help thin out the sludge that was coming from her spleen.
Some ranting about paperwork: When Denise was discharged, her nurse was great about going over all the meds with me from a paper called the "Medicine Administration Record." I felt well prepared to take care of her. There's also another sheet entitled "Discharge Instructions" that also listed the meds. Almost all of the meds matched up, but two didn't. I didn't notice this until yesterday while sitting around in the E.R. The Med Admin Record didn't have the prescribed anti-nausea med listed (Tigan in suppository form, just in case she couldn't hold down meds taken by mouth), but it was listed on the Discharge Instructions. Magnesium wasn't on the Discharge Instructions, but it was on the Med Admin Record (and it was also prescribed). I didn't get the prescriptions until the time of discharge, so I was running around like crazy trying to get the prescriptions filled on Saturday. Saturday of a holiday weekend, mind you. Some of the things that Denise needed were kind of out-of-the-ordinary, and weren't in stock, or only a few pills could be given to us. There wouldn't be enough to get us through until the next shipment, which will be Monday night. On Saturday the pharmacist told me that the Sav-On drug stores will be open Monday night, but their pharmacies will close early, leaving us high & dry until Tuesday morning for some meds. I guess that in that respect, it's fortunate that Denise is back in the hospital. They're providing her with the meds to get through the weekend. In addition, the prescribed special wound-dressing supplies are apparently only to be found at medical supply stores, and every one I called was already closed for the holiday weekend. I was freaking out, because her wound dressing was coming off and drainage was seeping through the dressing. Fortunately, the nurse aunt talked me through what to do to patch it over, and the nurse on call talked me through finding a small supply of what we needed among the materials that were given to us as we left the hospital. Back to the meds, then... I went to several different Sav-On stores to get prescriptions filled as best I could. Then Saturday afternoon when I called Huntington's pharmacy to get the slack taken up... closed. Sunday morning came, still closed. I even called today, still closed. During the weekend, I also called the nurse station, the case manager, and I don't know how many medical supply stores and pharmacies to try to get the anti-nausea meds and her prescribed wound dressing supplies. Many, many, many phone calls and lots of driving later, I found out just today that the prescription for the Tigan anti-nausea stuff was still at the first pharmacy that I went to. It wasn't filled on Saturday because the pharmacists couldn't make out what was written on the prescription. Frankly, I didn't notice it looking any more illegible than any other doctor's script that I've ever seen, but I guess that the pharmacists would be the pros at deciphering the writing. Anyway, when the pharmacist tried calling the hospital's pharmacy phone number on the prescription, they were closed, as already stated. It was only today that, because of showing the pharmacist the Discharge Instructions with Tigan listed, that the pharmacist was able to fill the prescription for the anti-nausea meds. That leaves me thinking, "Hmm... If we'd had the anti-nausea suppositories on hand (and/or in end), would we have been in the E.R. on Sunday?" Again, since there's a possibility of flu, ileus, etc., there's no telling.
So here you go... some helpful hints to keep in mind if you ever find yourself or a loved one anticipating a discharge from a hospital: Get the prescriptions in hand and get them filled a couple days before being discharged, not the day of. Do NOT go home on a holiday or on a weekend. Wait for a regular old day, smack-dab in the middle of a regular old workweek. That way the pharmacies will be opened, the regular medical staff that already knows you will be available, and if you need help, someone will probably be around to answer the phone. Wait until the vomiting stops... the hospital has plastic-covered pillows & mattresses that clean up fairly easily. Not so at home. Finally, do what you can to celebrate Christmas someplace other than in an E.R.
I'd hoped to be able to post a picture of the family tearing into Christmas gifts, or tearing into Christmas dinner. Sadly, Denise & I missed Christmas with the kids yesterday. But I did realize that the Christmas photo I posted the other day was the wrong one. So here's the right one, with the border & greeting. I apologize if I don't get the greeting cards out in a timely manner this year. The neat thing, though, is that with this blog, I don't really need to include a Christmas letter to tell you what our family's been up to.