2002 Story Set
| January 24, 2002 We Miss Our Regular Doctor!!!! It all began on Thursday morning. My younger son was due to go in for another Lumbar adventure. I was in the shower - hot showers are lovely when you are tired and stressed and with the upcoming lumbar event, I certainly qualified as stressed. We had been to Louie's viewing Wednesday night, a lot of driving. My son had showered, shaved, done his hair, put on dress slacks, not sweats, a dark shirt and his still-in-the-wrapper black Bill Blass trench coat, and of course his heavy hiking boots, which he can stand and walk in fairly well. I had on a black long dress, also new, and a black velvet shirt as a jacket since it was cold. All the coats I own and I do not have a dress one. Well, yes I do, but a full length ranch mink and sable did not seem appropriate. We looked properly attired for this West-Coast version of a wake. So I was a little tired. As I stood there, prior to rousting my son out of sleep (he hates early hours) and dragging him NPO (no food) to the hospital, it suddenly hit me. A thought, not the water. They had forgotten to tell me to start the BiCarb pills. Four at dinner and four before bed. And lastly, four in the morning. I had not refilled the prescription. But I had 8 pills left-over. I rushed out of the shower, tripping over the space heater, grabbed a bath/beach towel and raced in to try to wake the boy. Ha. Ha. and Ha! He waved me off. He rolled over. He would not even open one eye. I left the pills and water and ran back to dress. Not a good way to start the day. I drive the old Toyota van to the hospital, to protect the truck and because the van turns in 13 feet whereas the truck turns in 45. The seats are out of the van and it is roughly like riding in a buckboard for all the springs we have. My son has ordered me to put the damn seats back in it for the added weight. Now that he is pretty much up and walking (the wheelchair has remained in the van for weeks and weeks), I may do that. We drive in, bumping along to the Dunbarton and over the bridge, maniacs on the way to work around us. I stay in the left-hand lane because there is a left-hand turn. They in turn feel that the speed limit, which I am exceeding, was meant for others. I arrive and park and walk the boy up to Clinic D, where we check in. We had done his labs yesterday before going to the viewing. In Clinic D, with the TV stations all blocked off to Blues Clues and TelleTubbies, we wait and then get checked in. Weight and height (Like he's going to grow!) and we find his Rottie slippers weigh about a pound. We are then directed to the day hospital where I deliver the good news - no bicarb - except the four I shoved down his throat this morning. They can fix this. They access him and hang not one, but two boluses. (Is that the plural for Bolis? Latin was a long, long time ago.) Then they discover that he was to be seen for a physical so we grab his IV pole and walk him back to Clinic D. Ooops. While doing this, we discover that I should have been sent to admitting, since the APU requires this. Another ooops. I run to admitting, where I am told I cannot sign the papers since he is over 18. I ferry them back. In the confusion, I leave them behind as we grab the pole and walk him back to the Day Hospital. A nurse ran in with the papers. Oh, this is going well! We get him to contribute to a urinal, and dip-stick it, and hang more bicarb and a spare bolis. We are calling the APU now to see when to take him up. Since the fluid is essential to getting him ready for the Methyldrexate chemo, the nurses pepper the IV pole with directions for the APU staff, we grab the papers and wander upstairs, papers and boluses jiggling along with us. We are told up there (crowded!) that we should "have a seat" - except there aren't any. So we stand and he leans on his IV pole. This does not last long, since seeing him standing, they whip him onto a gurney. I stay with him. After a bit, along comes a NEW anesthesia team. A nice-looking young doctor with an accent (British?) comes up and asks the stock questions about what we are doing, what he is having, etc. etc. But I am, by now, having none of this. They have known he was coming. They know he is a critical case and the last time they carefully wrote all the directions down. I try to give him those directions. He, in turn, knows more than I do and does not want to listen. (And how many PhD programs did I do?) I tell him, more than once, "You need to check the record from last time." He finally (Why do men not listen to women? Why is this difficult?) heads for the book. I had, by this time, just about run out of patience. My son says I need to calm down. I say that they need to be better prepared and familiar with the incoming patient. A mistake at this end could kill him. I am not calm if you threaten my child. I don't care if he is 6'1" and 240 lbs! So they have the book. And here comes another doctor. He wants to know if we've ever "had problems with anesthesia." Duh! I send him for the book. And then he wants to know why we are doing this in the APU. Because the local stuff (Verced, Phentynol) wasn't working - his heart rate was going too low. What about a local? Not good enough because when we tried that he screamed in my arms for about 90 minutes and I stopped that session cold. OK, we resolve what he needs. We also resolve that he will be sitting up, not laying down, because they can't access him laying down. I had already reminded the doctor doing the actual access, do it with him sitting up and use a 5" needle. We move to the APU and I remain long enough to see him set up, on O2 and everything ready. Right after they swabbed his back they wanted me out. OK. I went - right outside the door. They got in in just two tries, the first wasn't much. The doctor who did this is delighted to tell me. I am delighted to hear it. Good. Then, I heard yelling. I believe they were trying to tell him to lay down. They also gave him too much stuff - because he needed to go to recovery. I went off to the waiting room - because then they bring you into the recovery room. I was pacing and very visible so I didn't wait long. I also had his glasses in my pocket. In recovery, he had a grape Popsicle and came around fairly fast. It took, however, a full hour, to get transport. They were waiting for two people to drag the gurney down to the Day Hospital. What am I? Chopped liver? OK - I let them do the work. I have dragged this child in an air therapy bed, considerably heavier than the gurney, the length of Stanford hospital, down to the MRI room. Twice. Today, I walk behind and help by holding doors open. Back in the Day hospital, we are in a 1-bed room but they have wheeled in chair and a TV and we are sharing for a bit. Because the hospital expanded transplant and other features without expanding the support area (the Day Hospital) or the parking lot. That's OK. We have a drape. And he is sleepy. It is close to 2:30 and I run down to the cafeteria for a salad (for me) and something that "does not resemble hospital food". I get him a pepperoni Pizza - freshly baked. I wait while they bake it. I have my 16 oz. cafe mocha decafe low-fat no whip. StarBucks has arrived at Stanford. We eat, he sleeps, I realize we need drugs. At three, I go to the pharmacy and take a guess that I need 6MP and Leukavorin. Good guess. I go back, and call in to work since he doesn't feel well and wants Mommy nearby. OK. We are set. I doze. TV is boring. At 5:15, I decide I'd better go pick up the drugs befoore the pharmacy closes. And do. Then I come back to find the main body of nurses in jackets and leaving. Well, I ask "Are these the right drugs?" Yep. "Have you seen the bag? Because they usually have it here by 5PM." This is the overnight portable IV bag to which he gets to be attached for about 44 hours. They call Home Pharmacy. Whoops! There are NO ORDERS! Well, we either get a portable IV kit or he gets to stay in 2North! They page the doctor. "Oh Shit!" She sends orders. The guy in the pharmacy was going out the door - guess not! We settle things. Until his supervisor gets in a snit. "Well, she said December and we didn't do one in December so there must be another pharmacy---" November 29th is close enough for me! Close enough for government work! I remind him that my son will need to go to 2North if they don't deliver - I don't say "and we will bill you". They get the bag to me at 9PM. Now, I also had to remind them what goes with the bag. 2 nine-volt batteries. An AC adapter. Needles (he corrected me - syringes) for heparin and saline flush. I didn't have a cap (got one later) and I have alcohol pads at home. And a back-pack. The nurses are saying, "Thank God you were here!" Well, the backpack, we discovered at 10PM when we went to go home, had a busted zipper. So you don't sling it over your shoulder - you carry it in your arms like a baby. A 16-hour bolis is like a newborn - big, heavy and squishy. We get home and I put the boy into my bed (required so that I can hear the alarm on the bag). I drag a 20-foot outside tool cord in and run it to the AC adapter from the ground-fault interrupter plug. I fetch a spit bucket, tissue and urinals. He measures off about 8-10 inches and leaves that much space in the double bed. He made sure that I was watching. When I finally crash into bed, I am cuddled by my over-grown kid. This is his thank you for my care. Since I was shivering (in the cold I get hypothermic and literally shake), this was AOK by me. I am warm all night. The down comforter is in the corner. Friday morning is Louie's funeral, right when we must be back for a bag change. We do this three times during this 48-hour event. We are about packed up, when the bag alarms. Air in Line. Oh yes! I remember this panic. I pop the top of the pump and take out the strip and ping it a few times to loosen the bubble into the filter and reassemble the pump. He gets as far as the bathroom when the alarm sounds again. We repeat the process. And again. And again. I get him in the car with the pump alarming. I start driving. He works on the pump. He gets it about the time I am deciding to go for the Dunbarton or turn for the closer Washington Hospital. He says he got it, and go for Stanford. If the pump fails, he has about 20 minutes to get flushed (saline and heparin) or loose the port in his chest. I look over - blood has traveled from the port to the filter in the line - and I just about loose it. The port is connected to a tube that runs directly into his heart - and he can bleed out. The pump has decided it has been beat on enough and keeps working. The blood makes its way back inside my son's body. My heart is racing by this time and I am white-knuckled on the steering wheel. I am near asthma failure (I had used the emergency inhaler). He spends the next 20 minutes calming mother down. Mother is focused on the road and driving 70 on the bridge. I remind him that a woman needs to vent! It's how we handle stress! He pats my hand. He asks the nurse for a tranq for his mother when we arrive. I tell them to replace the pump and the broken backpack. I leave him plugged in the wall of the waiting room. His blood draw is 1:30 and I have to run to work for a moment or two. I do, and get back and grab him and roll off. We get home by 3PM. We have a short time at home before driving back tonight about 7PM for a bag change. After that he has pills and a GCSF shot before I can go to sleep. (The IV bags go 16 hours. If they did 24 hours, it would be so much easier!) And he has already determined that I will go shopping and get him: Chili, a shrimp platter, raspberry ice cream, and chips. I am a little concerned about this interesting mix. What are they putting in that bolis? I add popcorn and light bulbs to the list and go fetch. What else do I exist for? |
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