The doctors came in around 2pm yesterday saying what infectious disease has been saying. Until we know what this infection is, they can’t decide on a plan. I waited till after Jesse got her shot, then ran to RMH to grab a shower, clothes, and food for us. I was gone for 30 minutes when the phone rang with a little voice asking when I would be back on the other end. I was back within another 20 minutes.
Jesse zonked around 8pm last night. I couldn’t sleep.
In the morning, the nurse came in for a lab. Jesse was already wide awake and sitting with me in the chair. Since the lab had been late putting the urine sample in the tester, they still didn’t know what she has.
We did find out her ANC had risen into the 9000s meaning the shot can stop. But we will have to continue the 2 shots of il-2. Jesse wasn’t thrilled about that part of it. Then the wound care nurse came to check her skin as part of a monthly study they are doing.
The nurse practitioner stopped into see us. She was talking about discharging Jesse back to RMH. And she began asking me about what medicines we would need. This reminded me to ask what medicines can we switch to pill form. Unfortunately I wasn’t able to get her to change neuronton to pill form. This is a really nasty tasting medicine from Jesse’s reaction.
After she left, I went down to Jesse’s teacher’s office to get her schoolwork that she missed yesterday. I figured this would give her something to do plus keep her from getting behind. The teacher was great in giving me the work, glue, and scissors. Jesse was really excited to work on putting Washington and Lincoln together.
As she was working on it, the nurse practitioner returned. I think she had a question, but I am not 100% sure why she came back to see us. As she was talking to us, the infectious disease fellow poked her head in with an announcement.
Good News: No infection in her blood.
Bad News: Same kelbsellia bacteria.
She instantly began talking about isolation and needing to get the stents out of Jesse. I asked them how isolation would work and neither could give me a straight answer. I also asked why she hadn’t had a urine analysis since Sunday night. They did agree she needed to have a sterile as possible urine collection the next time she needed to go. (That was fun… she’s like that horrid cartoon on Disney in the morning called Nina has to Go – she waits till the minute it’s an emergency to really have to go).
Around 1pm, we gave Jesse her il-2 shot. And once again she choose me to give her the shot over the nurse. She asked the nurse why she was wearing the white gown. We explained that since Jesse has a bacteria that is resistant to most antibiotics, the nurse has to take precautions. (The infectious fellow kept saying resistant to all antibiotics, but interestingly meropenem seems to be working… hmm.)
Her main oncologist stopped by around 1pm. He had not read her chart yet, but felt that we should have a consult with urology. I think he is hoping to get the stents out without having to replace them. I am all for that. And when I told the nurse Jesse’s tumor shrunk by 32%, she was really excited and very positive about the stents might not being needed. I asked him why this was considered a UTI when she only has 50,000 colonies growing versus the 100,000 they have told me before. He explained that since she has had this happen twice that is why they are considering it a UTI.
The dentists stopped by to check the loose veneer. He didn’t feel that it was a huge deal. He did say that her front two teeth are very close to coming out because the roots aren’t visible on the x-ray any longer.
The eye doctor stopped by to test Jesse’s new glasses. She was really pleased with how well Jesse can see with them. She told me she’d been really worried since we saw her last week. I really appreciate that she was so worried about us to make sure that Jesse got what she needed. 🙂
The nurse practitioner returned again to let me know that Jesse is going to be in isolation for 2 weeks. She has to finish the 7 to 10 day course of meropenem. Then 48 hours later she has to have a clean urine. Then 48 hours after than she has to have a 2nd clean urine. She told me that I would have to call patient services to get everything set up (turns out that isn’t the case). She also said she was keeping Jesse on half maintenance fluids for another 48 hours. She wasn’t sure where we’d be, and therefore was going to have IV pharmacy deliver to the room.
I asked her how this would affect the start of chemo, the NK cells, and Mike coming to Memphis. From talking to her and the transplant team coordinator, things for Round 4 look right now like they will happen as planned. Man, I hope so. Jesse and I need to go home. I figure it will be almost day 100 before we can even think about setting foot in our great little house.
The IV pharmacy lady called me incredulous again. “Do you know how to give eclipse medicines through IV lines? Has anybody trained you?” All of this asked in the demanding tone again. She is nice to meet in person, but on the phone… she has the tone that we all are morons bent on killing our kids even though I brought her here for treatment.
The nurse suggested I call patient services to make sure everything was straightened out. From them I found out, we had to get everything out of RMH. We’ve been kicked out. Really messed up in my opinion. In two weeks, they will probably place us right back there. I actually am hoping not. And with the big gun rounds coming up, why not let us stay in St Jude, then a week at the Grizzly House? From the way round 5 and 6 are described to me, I would not be surprised if we don’t spend 3 weeks each time in St Jude.
Either way, I had to run over to RMH and get all our stuff. The house manager was wonderful when I explained to her what was happening. She told me that we didn’t have to clean the room because they would do a deep cleaning. It took about two hours to get everything packed. And when I went downstairs the manager had left. The girl on the desk has no customer skills. I have noticed her attitude before.
She asked what I needed. I explained that I needed to turn in the key and vehicle tag. She called the house keeper, then returned to sorting mail. After a few minutes she looked up at me :”House keeping will meet you at your room.” And of course, house keeping was in no rush either. I was feeling stressed to get back to Jesse. She checked the room out, was pleased, and wished us good luck.
Back at St Jude, Jesse was getting a dose of meropenem. When that finished, the nurse hooked her up to the new fluids in backpack Fred. Then I went to pharmacy for the medicines and to find a wagon. Jesse was very excited to wear a yellow safety gown. To me it is crazy that they had her wear the gown and gloves, but no mask.
We got to the Grizzly just a the van unloaded with many travelers. They have placed us in a room with a door to the outside, and Jesse is not allowed in the interior of the hotel. She was hungry and asked for pizza. They have a deal here where you can order a pizza with a coupon that gets it for free. Jesse ate 2 pieces, and I was bad. It was easy food on a frustrating day. Yes I will pay for it tomorrow when I am itching everywhere.
Jesse’s next dose of meropenem is at 2am. The clinical pharmacist who stopped by told me 6, 2, and 10. I am thinking she had that backwards… 2, 10, and 6 is how this one is going to work out.
The good news is the internet here in this room is very promising. It has stayed up the entire time I have been typing. Yeah!!
Kind of feel like we should be wearing shirts saying we carry petulance and disease. Proceed with caution. For the next two weeks we have to enter St Jude through a special door on the side of the building. She can’t be in class with her classmates. Jesse is really depressed about this. I am hoping the schedule is correct in saying her teacher will come to her.
What blows my mind about this isolation door is that it enters through A clinic. A clinic is the Leukemia clinic… the kids who are often at 0 ANC. I just don’t understand the thinking for having her enter through that door.
Thank you Willie and Renee; Jim and Jackie; Mrs Delo; and Mt Pleasant Baptist Church Tuesday Morning Bible Study for your cards and well wishes. 🙂
Thank you Inee for the stickers. Jesse was very excited. Thank you Jimmy, Melinda, Emileigh, and Landan for the “Froggy First Kiss” and Reese cups. Thank you Abby and family for the Doc McStuffins blanket, bracelet, necklace, and hand drawn card. Jesse loves the snuggy, and she fell asleep wearing the bracelet last night.
Thank you Olive Branch Christian Church for the clothes, goldfish, gluten free food, card, and M&Ms. Thank you Sandy for the bracelet kit, headband, necklace, and Hello Kitty. Jesse was so excited about the necklace because it is exactly like the one she gave her sister. 🙂
Thank you Cheryl and Rick (sorry if that is wrong) for the coloring books. Jesse was so excited about the Hello Kitty coloring book. Thank you Mount Vernon United Methodist Church for the prayer shawl in purple, Jesse’s favorite color 🙂
Thank you Ginger for the Starbucks card and support. I really appreciate the coffee thought… and with the timing of medicine I am going to need the caffeine.
Thank you Meme and Papa and Aunt Phyllis for the support. Jesse has been super excited to show her sister the Panda Bear shop at the zoo. Thank you Terri and Jim for the card hat. Jesse enjoyed wearing it today.