A nurse last night hooked me up with some extra blankets to make a pallet on the floor. I slept better save for the nurse waking me up. Chris commented that she slept the best she ever had on the couch last night.
The nurse did wake me at 6am to let me know Jesse would need blood because her red blood was at 7.9. ANC is still hanging at 0. Her white blood count hasn’t moved at all. When this starts to move up that will be a good sign. Her platelets were 99.
As I was stepping out to brush my teeth, the nurse practitioner was coming in. She told me that from Jesse’s ultrasound the doctors felt Jesse’s swelling was from her lymph nodes. She had to explain to me that the lymph nodes often hold junk (someone else told us that the lymph nodes gather white blood collect in the lymph nodes and are given instructions before being sent out). The nurse practitioner said that the infection could be causing the swelling.
As she was telling me this, Jesse began heading to the bathroom. The nurse practitioner took a quick look at her groin. Then she said she would be back (never saw her again). The girls played with one another and asked the nurse for some crafts.
While she went to look for them, the teacher stopped in. Jesse spent an hour working on her letters, numbers, and site words. Mike suggested that I run out to Kroger and get lunch for everyone. I took the opportunity to grab a shower. I needed it because the constant in and out of people in the hospital room is getting to me. Plus the girls view everyone coming in and out as a new person to shower them with attention so they talk incessantly. There are times I feel like I am in the school lunchroom.
I was gone about 2 hours. I figured someone would stop by while I was gone, but surprising no one did. Jesse devoured the nuggets I brought back for her.
The unit manager and another doctor came by after lunch to check Jesse’s line and pump line. Everything checked out as they wanted, unless they chose not to tell me. They did ask me if everyone has been cleaning for 15 seconds. So I asked them about it because their handbook says 7 seconds. I got something about CDC regulations and yada yada. I find this really interesting because when I asked the line nurse in December why only 7 seconds, I was given that’s all you need. I am so tired of getting conflicting answers from various people within the same organization. (No worries I ignored the 7 seconds in December and have been cleaning 15 seconds.) I also asked them why I have seen people downstairs cleaning where the clave meets the lumen first instead of the end of the clave. They didn’t think that was a big a deal as I do because it’s alcohol and the drying action will kill the germs.
As they were in the room, the attending arrived with the medical student. He asked if we’d heard about the ultrasound. I told him what we’d heard. And he added:
- They are not sure if the swelling lymph nodes are caused by infection or tumor
- They planned to have infectious disease follow up with a plan of how to treat Jesse long term
- Her kidneys are showing stable bilateral hydronephrosis, meaning her kidneys are still swollen
- The kidneys are flowing okay. Not great and it will be the urologists call about stents.
- They have talked about taking her off meropenem to save that for a more serious infection. In it’s place they plan to use sephlapin
- Jesse will also go back on the nitrofurnation
He then asked if the main oncologist had been by see us. Turns out when he left the room yesterday, he called the main oncologist directly. I really appreciate him doing that. He then asked what we’d been told. And I told him what we understood to be the plan. Plus the concern with Jesse’s electrolyte (or electric lights as she calls them) loss from her kidneys. He then took the time to talk with Jesse and joke with her a bit. Really like this attending. He makes us think of our home oncologist, who we miss dearly.
The infectious disease doctor was the next to stop by. At this point, they don’t know if it is infection in the lymph nodes or tumor. But if it is infection, then it might be mersa or strep. He recommended putting Jesse on the sephlapin and starting the nitrofurnation back for potentially several months to keep Jesse from having uti’s.
As for if Jesse will be on sephlapin as a prophylaxis, we will have to wait and see if we do round 6. He did tell us that the septra is only a prophylaxis for an airborne illness that if it gets in the lungs is bad news. For the swelling of her groin, he recommended waiting to see if that swelled again before giving her clydamicin. This is an antibiotic which will knock out the mersa or strep if that is what is causing the lymph nodes to swell.
Mike mentioned to the infectious doctor about Jesse getting to recover at home for round 6. But since we don’t know if we’ll do round 6, this is kind of up in the air. I’d love to do that, but I am concerned about this swelling Jesse keeps getting. If we go home, will we end up in CHKD with a fever? I really need to get her through a round without being in the hospital. On the other hand, Jesse had really improved with Chris and Mike here. She was even dancing today and moving a lot more. Having her sister around forces Jesse to move. Needless to say I am torn right now on what would be the best thing to do for Jesse. I feel that she needs to be home to have her sister helping to push her to move around.
We hung out till 5:45pm, when the nurse brought Jesse’s shot. I was getting ready for a webinar sound check. I gave Jesse the shot, she didn’t scream, and the nurse was surprised that we’d done it so quickly. Then I tried to listen to the webinar, but this is difficult with Chris and Jesse around and trapped together in one room. Both have to constantly be talking. That’s okay…keep talking… you will be talking on the phone one day, and I will follow you with the vacuum cleaner. If you go outside, the weed eater and blower. I am going to have the shiniest floors and trimmest yard.
Thank you Ruth for the books. Chris has been reading them to Jesse. Thank you Ronnie, Jennifer, Graham, and Blake for the Frozen book and t-shirt. Jesse is now at 13 times watching Frozen. She often rides the halls here singing various songs from the move. Her favorite is “Hang in there Joan.”
Tomorrow Mike and Chris head home. Jesse is already starting to stress about them leaving. I will miss them too. And there has been some rumor about Jesse leaving the hospital… her fluids have been cut back to 4. But I will believe it when I see it.
Still praying for all of you.