Last night Mike, Chris, and I played UNO while Jesse watched. After a bit, it was obvious that both were done. It’s exhausting sitting around in a hospital room doing nothing but waiting…
Jesse was determined to stay in my lap all evening. She actually feel asleep in my arms. I am not sure if my sleeping a night away from her caused that effect.
Chris began complaining that her stomach hurt a little after Jesse fell asleep. Not sure if traveling effected her because by this morning she felt much better.
I fell asleep in the room with Jesse, while Mike slept with Chris in the parent room. Jesse was 99.6 Fahrenheit at 8pm. By 12am, she was 100. She must have gone down in temperature afterwards because the nurse didn’t wake me to tell me differently.
Around 6:30am Mike tapped my arm telling me to go sleep in the room with Chris. While I needed to spend time with Chris, that couch bed was not the best for my neck…
Around 8, we were all up. Chris and I grabbed a shower. Mike grabbed a shower next, then started a load of laundry. Between him grabbing a shower and Chris and I grabbing one, the attending and fellow stopped by. The cultures show that the current antibiotics are not the best ones to take care of the infection.
They have switched us back to meropenum because it is more effective for this strain. They also decided to give her platelets because her numbers were at 46. Her hemoglobin is good at 8.8. ANC is still 0, but her white blood count has inched to 0.3. She also has gained 0.1kg.
The attending also mentioned that we should have her on a prophylaxis antibiotic because of the stents. She is on a slight one (septra) for her CVL. They only give it twice daily three times a week here. I am really thinking now that bactruim back in the first round saved us from playing “What interior normally good bacteria, as long as it stays where it should, do we have in the blood and line now?” game. I asked the first line nurse we ran into about an antibiotic for that reason and was poo-pooed. Now because of the bilateral stents, we have a shot of getting bactruim back in the mix. We’ll see though… I’m sure his idea still has to pass the main oncologist’s agreement and other people’s too.
Jesse decided after the zofran and Benedryl kicked in that she wanted crab chips. Mike and Chris had gone to look for snacks. When they returned with Pop Tarts, Jesse wanted one in addition to the crab chips. Mike joked that the blood she got yesterday must have been from a pregnant woman. But Jesse didn’t want the Pop Tart long. One bite, and she was done with that.
After lunch, we took a walk to the covered porch and to see if we could find Hi-Ho Cherry-O. No luck on the game, but we did find phase 10 and Chutes and Ladders. The girls played briefly before wanting to do something else. I sat on the porch while Mike and the girls walked around. The internet out there was no better than in the room.
I did learn something very interesting from our nurse. I can request not to have certain rooms! I was telling her the internet was great in 2011, which is closer to Chili’s Care Center and the box was right outside the door. I am wondering if the care center is better wired for wireless. So from experience rooms 2058 and 2077 are out.
The nurse told me that often people request 2058 and 2077 because they are further away from the nurse’s station. Might be for more privacy and quieter (occasionally it does get noisy out there.) I’d rather be closer to the nurse’s station, plus privacy in a hospital… yeah privacy in a hospital…
Jesse asked the student nurse today to bring her teacher and classmates by before they left. They willingly obliged Jesse, and she and Chris had a lot of fun talking with them. Jesse was very kind in saying the whole group should get A’s.
The main nurse for the day brought them some play-do to play with. Chris made an impressive hot dog complete with bun, ketchup, and mustard. The nurse was even kind enough to pack some for Chris to have at home.
Around 4pm, I gave Jesse the shot. Then we walked Mike and Chris down to the lobby to meet their cab for the return flight home. It doesn’t get easier. I did have a moment today after Mike asked me why I was being so grumpy. It is hard to be away from home this long, but I can’t go home without Jesse because then I would feel really guilty. She had a horrible time with Chris and I being over at RMH. If it was Mike and Chris, she’d miss them… but me, that’s a whole other can of worms.
Jesse was really sad to see them go. I was too. To kind of distract her, we walked to the cafe to get a drink. Then we returned to the room. Jesse decided she wanted to watch Phineas and Ferb. She is tired of the crappy overly dramatic non-animated shows they have on TV (and yes I am taking a no name pot shot at 2 major kid networks.) Really wish they had just the Junior versions of those networks here. The junior networks are far less unnecessary drama and don’t try to find laughs at the expense of other people’s pain or embarrassment.
Yes I have movie and TV watching issues… and Jesse is picking those up too. And it is why I don’t miss cable TV.
Jesse asked for pancakes around 5:30pm. I ordered her some. While we were waiting for them to be ready, Jesse began fussing about her right labia and feeling like her pullup was stabbing her. Her right labia looked a little larger, but it wasn’t red all over.
The nurse looked at it. She suggested trying a cold cloth. Jesse didn’t think this helped. She tried a warm cloth, but that didn’t help either.
She called the resident, who arrived very promptly. He took a look. Given Jesse’s history, he didn’t feel that it was infection, but that it might be the tumor. The only way we’ll know for sure is scans. I will not be surprised if before round 3, they are going to talk about surgery to remove some of the tumor. From what I have heard the tumor is in that area.
Think I shocked the resident with how calm I am about all this. He wanted to prescribe Tylenol since she wasn’t presenting a fever. I don’t want to cover a fever in case Jesse tries to run one. I think he went with Tylenol since Jesse has been saying no on the oxycodone. I decided to pull rank on her tonight.
Currently we are just keeping an eye on it. And we gave her oxycodone to help with the pain.
Jesse ate half of the pancakes they brought her, then she ate a yogurt with nuts. And a little bit ago she asked for pretzels. Unfortunately after finishing the pretzels, her stomach was hurting. The nurse gave her Benedryl. And Jesse has fallen asleep. Maybe just maybe, her ANC will be 100 tomorrow and will start shooting up to 2000. If the do things like last time, the GM-CSF shot will stop at 2000. Her last IL-2 shot for this round will be tomorrow.