Day 99 & 100 at St Jude

Day 99

Day 99 at St Jude passed quietly. The doctors all seemed pleased with how well Jesse felt. In fact she was dancing last night. She did weigh 14.6kg (32.12 lbs). But during the day she wanted to eat with having to have any peractin to make her feel hungry.

The only two excitements of the day was the joy of dealing with the line nurse who told me sterile tape changes were too mechanical. She acted really differently towards me. She looked at the spot around Jesse’s CVL entry. It is red we think because of possible chafing from the position of the line. She was surprised the sutures were still in place. Turns out they should have been removed 2 months after the CVL placement. We agreed to meet on Friday at 11am to remove them, put cream on it, and replace the sterile tape.

Five minutes after she left a different line nurse came in. When we looked at her confused, she asked what was going on. We told her that we’d just seen her co-worker. Her comment to this was “I just told her where I was going. Why didn’t she tell me she’d been up here?” And I have noticed that the line consult for Friday at 11 is not on Jesse’s schedule. I have a really good feeling that she didn’t schedule that either. :/

The second was my mistake of going down to the cafeteria. Wall to wall people. This place has exploded in people. And sometimes that is compounded by tours and seminars coming through. How do they know everyone on the tour is well?

There is a good deal of failed communication here. And also I think people with good suggestions not being heard. But hey that’s what happens in big corporations, right?

Day 100

The clinician last night isn’t like the ones we had the previous two nights. At 4am, she woke me because she couldn’t get Jesse to get up to go to the bathroom. The only trouble was she didn’t really try. And once she “failed” at 4am, she just automatically failed to try at 6am too. I know I am her mother, and it’s my responsibility. But dang, you get to go home and sleep in a bed, not a plastic couch that you feel like you are fighting all night. (It won from the feeling in my left kidney, right hip, and right arm… for those keeping count 🙂 Is it bad that I want to find the person who made that purchasing decision and require them to sleep on it for a week?)

The night nurse did one of Jesse’s ethanol/ placebo dwells. The second one had to wait because of the line being used for IV fluids.

At 6am, Jesse moaned in the bed till I allowed her to come lay on the extremely uncomfortable couch. She then slept till I woke her at 9am to use the bathroom and take her medicines. I then carried our suitcase out to the car. When I opened the back hatch, I had the sneaking suspicion the battery was dead again. Great, just freaking great. I miss my suburban for the reliability, but not for the gas mileage. I sometimes also miss it for the size, but then I would probably cram more crap in it than I need.

Back upstairs the attending nurse practitioner dropped in to say Jesse’s CO2 was low. This is a sign she isn’t hydrated enough. Her potassium was also low. I was able to get her to agree to give Jesse a tablet instead of having to drink the liquid version. She also told me they were going to give Jesse a bolus of fluid. I had asked for IV fluids when we left, but as usually that obviously fell on deaf ears. So now I get to chase after her on drinking and peeing, which was the plan anyway. But the fluids would have helped her to stay hydrated. On the other hand she does need to learn to drink as she should. Double edged sword.

The nurse came in around 10:30 to remove the other ethanol from her white lumen and give Jesse her il-2 shot. Jesse started to get a little worked up, not to the point of tears, but I could see the fear and tension building. I told her to relax. The nurse cleaned the spot on her bony leg, counted to 4 as requested by Jesse, stuck the needle in, and waited a second. I think she was afraid Jesse was going to jerk. The only comment from Jesse was “I didn’t even feel that.” Think that shocked the nurse pretty good. I was. I figured the not screaming from round 4 was a strange wonderful fluke.

About 11am, a student from seminary dropped in. Took them long enough to find me. I say that with total sarcasm. He was as uncomfortable as most of the volunteers here. Luckily the Infectious Disease doctor in charge of the Ethel study saved us. He and the seminary guy didn’t see the isolation sign on the door and forgot to suit up. Yes evil of me not to say anything to them, but like Melinda says “It’s a quiz. And in the paying attention department, you failed.” The teacher caught them when she came in suited up. The Infectious Disease doctor threw the seminary guy under the bus by saying he doesn’t have it on either. I figure that poor seminary guy was thrown into the fire (guess I’m kind of considered a pain in the butt because I showed up their office in December on total overwhelm and turned down their scheduled meeting. I felt like they should have found me… they did, but sent this poor green kid in for the dirty work. No worries, I was nice to him 🙂 )

Before the teacher arrived, the Infectious Disease doctor asked how isolation was going and how Jesse was doing. I told him about the UTI that Jesse had when we went home. He had no knowledge of that and was really surprised. He asked if Jesse is on a prophylaxis antibiotic. I told him no because the other doctors don’t want to do that in fear of increasing resistant strains in Jesse. He thought for a moment, then said he’d talk with her main oncologist. He asked how the ethanol study was going. I did tell him about the one time I accidentally pushed her ethanol/placebo threw. And with the green seminary student standing there commented that at least I was the first to give her alcohol. (For those cringing that I would say this- the kid has had chemo and way worse. This was only .6mls of the ethanol, if it is ethanol. She had no effects from it luckily. And I am not mixing her drinks on a nightly basis. Plus we have already told her to never drink and drive.)

The nurse popped her head in to ask if I wanted to participate in the rounds for Jesse. As I moved my computer for the teacher, the Infectious Disease doctor stepped out to talk with the team about getting Jesse on septra 7 days a week (septra is the “Southern” name for bactruim. People “up north” call it bactruim as I have been told.) The doctors on the round agreed to talk with her main oncologist about it. They joked with him about how he wasn’t suited up, how he was trying to be smooth in getting out of being noticed, and a time before when he gave report in rhyme. That would have been fun!

They were really happy to hear how active Jesse has been. And they are pleased with her intake of food and drink (non-alcoholic). The team decided that once we were ready, we could go.

I ran to grab Jesse’s medicines after her round. I was in such a rush that I passed another family I thought was through with treatment. I was so surprised to see them I didn’t get a chance to ask how they were after we passed.

As I was returning the social worker appeared with the wig Jesse ordered. I didn’t really want her to order it, but I kept my mouth shut. It’s her body. The wig does look cute on her, but I hate it. She looks so good bald to me. Plus the thing sheds and it’s another thing to have to care for. I’ll need to wash it and dry it because I guess it can pick up bacteria. It actually for that aspect and her falling ANC, grosses me out. It also trips me out that they sent her the box with the wig, a book, toothbrush, toothpaste, shampoo, and body wash. But no hairbrush or approved comb. I would have thought that was really important.

At a little after 12pm, we headed out to meet security. The guy tried to jump the car, but all it would do is blow the horn. Even with the jump box on there, it wouldn’t even turn over. Poor guy felt really bad he couldn’t help us. But this might be for the best because something is clearly wrong with this Honda Pilot. It’s basically becoming a storage shed with wheels.

I carried Jesse over to Grizzlies to get checked in. I didn’t want to have her sitting anywhere too long without access to fluid and a toilet. They had a trainee on the desk, who either felt very uncomfortable or didn’t have a lot of initiative. I called Patient Services to see if our cards were still correct after leaving the trainee.

At St Jude, they give you meal cards. It is extremely generous of them, but they are set for limits of time manually. Not based on where you are on the premises. And from what I think, it must be a separate program running it. They had us at the Grizzlies through Friday morning. But after talking with them and the uncertainty of our situation, they have extended us through Monday. Jesse’s culture from Monday, March 24 has grown 20,000 colonies of some strep and another of a gram negative they think is klebsilla. I am thinking they will probably keep us in isolation since they threw her in for having 50,000 colonies to begin with. And if I am wrong, and we are kicked back to RMH… hopefully I will have my car back.

When she was situated, I made a quick dash back to the Pilot to fetch the absolutely necessary things we would need. And I have come to the conclusion, I am still carrying too much stuff. And when Mike comes, I am going to send stuff back with him. And I have a feeling that I am going to be stuck in purge mode for a bit even when we get home. It has been very eye opening to see how much stuff I have surrounded myself with that I don’t need.

I called Mike to let him know what was going on. Poor guy is frustrated that he’s 900 miles from us. But he did find a dealership here in Memphis and set everything up with them to look at the car. I called AAA to have them tow the car. Boy were they confused as to where I was. Then they wanted me to ride with the driver. It took a bit to get through to them that Mike had set up for the car to be dropped off.

The driver of the tow truck called at about 2:45. He tried the jump box too. First time we got horn, second time after he tightened the terminal – nothing. And we couldn’t figure out how to get the Pilot out of gear. I called Melinda to see if maybe she knew, then her dad (thanks guys I really appreciate it), and then we were going to drag the car on the flatbed. Mike must have had a sense that I was getting ready to screw up. He called to check in, found out what was going on, and called the dealership to see if they knew. Turns out there is this black box on top of the steering wheel. Take that off, push the button inside, and presto I can put it in Neutral!

The driver had me wrestle with the wheel while he pulled the car onto the flatbed. I parked in a parallel spot to avoid having people ding my door again, but this isn’t so easy for a tow truck. Poor guy he kept telling me to go left and I would go right. I will say that not having automatic steering took me back to the days of driving the Maverick. And it is one heck of a workout. I told him I was sorry for going the wrong way. I would do that too in karate. Everyone was going left and I was headed right. No worries, I only got far enough to know Joe Kata (one move that really counts and allows you to run) and to be more of a danger to myself 🙂 And in the last 3 years I have practiced the running part more.

Back at Grizzlies, Jesse played with her Sophie and family figures. She has been a chatty soul tonight. For dinner she ate 3 slices of pizza (please stay down because her weight today was 15.2kg – 33.44pounds). We talked with Melinda, Christine, Emileigh, and Landan. Landan let Jesse watch some of Frozen with him. I went ahead and got it for her ipad. She’s been wanting to see it so bad. And right now she giving me the blow by blow. Yeah! Now I can act like I watched it without having to watch it. (I have TV/ Movie issues. Mike often gets frustrated by my inability to watch a movie and sometimes TV shows all the way thru. Sometimes they make me uncomfortable.)