Hi everyone,
One of the interesting things about Stanford University Medical Center is that if you have a patient in ICU you can create a password at the nursing station so that you can call and check on your person. It protects patient privacy and keeps family informed as they don't allow phones of any kind in ICU rooms.
Our password was of course, Rocketman. So we would randomly call and say, "The password is Rocketman." I tried to get mom to say it in a hushed James Bond kind of way, but she wouldn't. Dad would have thought that was funny. It's like back home whenever we go through the McD's drive through to get grandma a bacon cheeseburger and David tries to get him to order in funny voices.
The big news today was that dad was moved from neurological ICU on the second floor to the neurological ward (G) on the first floor. Here is a fun fact - none of the buildings in the area can be more than three stories high due to earthquake risk. He was supposed to go to a regular room, but ended up in what they call a step down room. It's on a regular floor but is assigned it's own nurse who cares for the three patients staying there. It's not clear whether he was put there because the hospital is operating at maximum capacity and that is literally the only free spot they had in G, or if it was because they thought he needed more close attention than a regular room where the nurse hangs out at the main desk unless she is needed. Either way, it is probably for the best.
We got the morning update via the phone service and kind of took our time getting to the hospital. We slept in because we had been so tired and then mom did some laundry. We each only packed enough clothes for one week. I looked at the fliers for guest services and decided to sign dad up for some stuff. They have a lot of cool things like music therapy, art therapy, and PAWS or Pet Assisted Wellness at Stanford. And it's all free! And as the nice O.R. tech I had talked with on Wednesday pointed out, by using the services you're providing somebody with job security. I mean, when you put it that way, gosh, it's like your obligation to use the services. :-) So I signed him up for art therapy, requested an in-house musician to come visit him, and PAWS. Family is allowed to participate in the programs too, so I thought even if he wasn't into art therapy that mom and I could do it. Not that he would, but I kind of have a mental image of him throwing some oil pastels at an unsuspecting therapist.
It was a beautiful day in California. It seemed like everything was just a little brighter and more cheerful than it had been the day before. Or maybe it was because we had been getting to the hospital so early and leaving so late that we just hadn't seen sunshine in awhile. Either way - life was good. We got to the hospital later than we would have liked, around lunchtime, but then realized that the step down room follows ICU visitor guidelines, so we couldn't have gotten in before 11 a.m. anyways. C'est la vie.
The first thing I noticed was that Dad looked sooo much better, although exhausted. His normal coloring was returning. He was also more coherent. He was still in pain though and as expected the swelling had set in. I would estimate that the left side of his head was about 30% larger than normal. He said he looked like the elephant man - so I had to look that up. And I have to tell you, he didn't look anything like the elephant man. Also, the elephant man has a name. It's Joseph Merrick.
Dad said he had a miserable night. They don't let you sleep much in ICU. They're required to wake you up every fifteen minutes to check on you. And he couldn't have slept even if he wanted to. He was in so much pain. I was livid. He said the night nurse messed around with medications, trying different cocktails, until about 3 a.m. I'm not sure if a surgery resident had been called or stopped by to check on him, but they said he could have up to 100 micrograms of fentanyl in addition to the percocet. She only wanted to give him 25 or 50. Finally dad told her to stop screwing around and give him the whole 100 that the doctor said he could have. The dosage made him woozy for 10-15 minutes, but it was the first time that his pain and become tolerable. Fentanyl is a very short-lasting drug, which is why they were using it in combination with the percocet which is longer lasting. When the fentanyl wore off she wanted to drop the dosage down but he convinced her not to mess with success. The idea is to keep the pain in a tolerable range because once it gets out of that range getting it under control again can be very difficult. I wondered if we should complain or something, but dad said she did a lot of other things right. But still, if it could help the next patient...
Not only was I mad about the nurse, I was mad at myself. I shouldn't have left without knowing that everything was going to be okay. I let him down and I knew it. They wouldn't have left me if the roles were reversed. The first week we were here different relatives would joke with me about not messing anything up. It's a lot of responsibility and I take it very seriously. During testing I felt that I had a lot of control, we had a lot of control. But honestly? Once they wheeled dad away to surgery, all of that control was lost. And that, for me, was terrifying. I wasn't there to remind them of all the important things that could be forgotten. And doctors are only human. They do make mistakes. I watch Discovery Health. I know these things. And the ICU wasn't any better because we weren't allowed to stay and protect him.
Over lunch mom and I decided that we needed to do something. Or talk to somebody. So first I sent Sandy, the research assistant, a text message. Now, she's not a doctor or a nurse, but she is familiar with how things work, is the nicest person on the team, and is also the most accessible. We also talked to Brian just to get his thoughts on the best way to approach it without stepping on toes. Ultimately we decided that we just needed to talk to one of the doctors or residents and make a non-accusative inquiry as to what they're procedures are, how decisions are made, etc. We also didn't want to make dad anxious so we decided not to talk about it in front of him. (Sorry dad.)
Before we could get any further than that we ran into Dr. Jaffe, the super nice attending anesthesiologist, who was just coming back from visiting dad. He's just one of those people that I connected with and before I realized what I was doing I asked if we could talk to him about some concerns. And he was so incredibly sweet. He led us out to the G waiting area and said he had all the time in the world to talk with us. And he listened and explained. I told him that I didn't want to step on any toes, but that as a pre-med I was at least a little bit better informed than the average Joe and had a lot of concerns about dad's pain management and how decisions were being made. He said that the only time you can be pain free is under anesthesia when the doctors can titrate the drugs and intervene immediately if your body responds negatively. After surgery he said the doctors write orders for painkillers in anticipation of what they expect. Also, that if a certain painkiller doesn't work, what else the nurses can try and in what dosages. It made a lot more sense. I don't think the night nurse did anything wrong per se, but that maybe she didn't take his pain seriously enough. Jaffe said dad was definitely an outlier - meaning that he had more pain than the average person who has that operation. So either he has more pain receptors or maybe they are just more sensitive. And she was trying to get him off the fentanyl because you are supposed to be off of IV painkillers before you can go to a regular room. In fact, that might be why he is in the step down room - because fentanyl has to be administered pretty frequently. I felt so much better after talking to him. I just wanted to give him a hug.
If fact, if they had an adopt-a-grandpa program I would take Dr. Jaffe in a heartbeat. He even has a fancy Mickey Mouse pen. A man after my own heart. It's like your typical business man pen - black, small, and metallic. But it has Mickey ears on the top! And the clip that holds it into his shirt pocket is gold and has Mickey's gloved white hand on the end. It looks a lot like this one, but I think his is made by Colibri. I think they must not be made anymore, because I can only find them online in auction sites. Sadness. Either way, Dr. Jaffe says we should just hop a plane to Anaheim and visit the Mouse on the way home. That would be fine with me. :-)
Then the Mom, Dr. Jaffe, and I all went to see dad together. We chatted for a few minutes but then he had to go to his 3 p.m. meeting. We walked him out and after he left we ran into Theresa, the surgeon's nurse practitioner. Now dad really likes her, but she didn't make much of a first impression with me. In fact, she kind of reminds me of Ms. Trunchbull from the Matilda movie. I assume that Sandy had forwarded her my text, because she fussed at us for breaking the chain of command, etc. But I'm not sorry. She is hard to get in touch with and I hadn't interacted with her at all prior to coming to California. So it definitely soured my afternoon, but I had to do what I thought was best.
More later.
Love,
Rocketgirl
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