Sitting here either listening to thunder or a chair scrape the floor above us. According to the Weather Channel (shock shock, they are actually covering the weather!!), a thunderstorm is headed this way. Jesse was worried about it earlier, but I reminded her that we are hiding in a cave right now. We did have one heck of a crack of thunder.
This morning we had to be at clinic for labs at 8:30am. Jesse was not interested in getting up at all. She had flopped like a fish out of water in the bed till 11pm last night. I did wake her at 6am to use the bathroom, then again at 8am to use the bathroom. At 8am, she was screaming at me that she didn’t need to go and she was tired.
We walked in through the isolation doors hoping that maybe, just maybe we’d be released from that today. Nothing against the nurse in isolation, but it would be nice to have a little more freedom. The nurse walked us to D Clinic.
I ran out to get Jesse a drink while she started watching Frozen again. When I returned, the clinic nurse had taken her blood for labs. The clinician was coming in for her temperature, blood pressure, and weight. After eating 3 pieces of pizza last night without any peractin, Jesse’s weight was 14.7kg (32.34 pounds). What the hey?! Someone’s scale has to be off.
We returned to the room to wait for her labs to be finished. Around 10am, the numbers had returned. ANC was 3800, platelets at 31, and red blood at 11.3. I also found out that Jesse’s line appointment we had scheduled for 11 on Friday was put in for 9am. So glad that line nurse listens to people (total sarcasm). But at least after 9, we might be done at St Jude for the Friday. Not like we will go far. With Jesse’s ANC set to drop at anytime, I don’t want to take any chances.
The fellow for infectious disease dropped in next. I am not sure what it is about this fellow. We have only seen her one time and that was in December when they were trying to determine if Jesse had an infection. She is nice, but there is something about her that makes me uncomfortable.
Jesse’s urine culture from March 24 has grown 2 strains of bacteria. One is a gram negative that they have not typed yet. Yesterday this is the one I was told grew 20,000 colonies. The other is a Streptococcus (I can’t remember what group). She told me until Jesse had a clear urine test we would be in isolation. She looked Jesse over. I asked her if our being in isolation would impede our chances of getting home. She told me no. Then she talked about catheterizing Jesse. Thank God Jesse had on her earphones and couldn’t hear that. I told her no that was out of the question. We’ll take our chances of not having the perfect urine sample in exchange for Jesse not being in pain. Plus shoving that up in her when her platelets are low and ANC is dropping didn’t seem like the best idea to me.
After she left, Jesse needed to use the bathroom. She was not happy about having to give a sterile urine sample. Once we got that over, the infectious disease doctor came in. He told me that the strep is what they normally see in urine cultures, and therefore he is not concerned. The gram negative one does concern him. He talked about putting her on two weeks of an antibiotic that collects in the urine and will sterilize it. From what they have seen, once kids take this they have a 3 to 5% chance of having a UTI again.
Today’s urine collection counts as collection 1. If this comes back negative on Saturday, Jesse will not get the antibiotic. Then Jesse has to have another clean urine sample to get out of isolation. At least in being in isolation we aren’t having to be out in the general germy population of this place.
Once the infectious disease doctors left, the nurse practitioner came in. The main oncologist stayed at the door because he either didn’t want to have to put on a suit or it was too close to his lunch time. He did say that if Jesse ran a fever we’d use meropenem instead of the antibiotic the infectious disease doctors recommended. And he wasn’t going to worry about it till Monday. I asked him about her low platelet count. He commented that he wasn’t going to worry about that either till Monday. If Jesse has a nose bleed or significant bruising, then we can go to the Medicine room for lab over the weekend.
Once we finished with them, Jesse and I headed back to the Grizzlies. She ate 2 pieces of pizza, but 2 hours later she was complaining that her stomach hurt. I gave her a Benedryl, and she slept until 5pm.
While she slept the psychologist called to check on Jesse. Because of complications in her pregnancy, she is having to transfer patients to other people. I opted to go with a call them as needed.
Then her nurse practitioner called. Jesse’s CO2 level is still too low at 16 (normal range is 20 -31). They feel that her kidneys are leaching electrolytes because of the ifosphomide chemo. To help her, they have prescribed a sodium bicarbonate tablet. And they are setting up an appointment with nephrology here to see if there is anything we can do to strengthen Jesse’s kidneys before starting the next course of chemo.
At 6pm, I gave Jesse her GM-CSF shot. She only complained of pain after the shot was done. Now she is watching Frozen again.
Oh yes, as for my car. Turns out the DVD player in the car was wired hot, meaning it was constantly draining the battery. We never noticed before because we drove it almost everyday. The fix right now is have the fuse removed. We’ll deal with that when Jesse and I get home.