Day 23 at St Jude

We woke up to the news this morning that Jesse’s ANC was at 700. Woo-hoo! Now we need to get to 2000 to stop the GM-CSF shot. When we stop that shot, it might cause her ANC to drop again, but that will give her a little break between rounds.

The judgmental resident was back this morning. Some residents need to have a simulated child and have to stay in a hospital room with that child. Or have to be “sick” themselves and stay in hospital room for a week or longer. They really, really need to gain some empathy and understanding for what patients and families are dealing with.

This resident and I got off to a bad start on Saturday when she judged me for being asleep at 8am when she came in. The night before Jesse was feeling better and stayed awake. Sunday she woke me at 8am, when Jesse and I had been up late the night before again. Monday I was waiting for her. I wish I could have snapped the surprise look on her face that I wasn’t as lazy as she though I was for being asleep at 8am.

I asked her about Jesse’s optometry visit. She told me that we could have gone downstairs when the platelets were running yesterday. And kind of acted like “Why didn’t you?” Well we didn’t because when you are getting blood products, you may not leave the floor. Eye clinic is on the first floor.

I decided then that she was not going to be helpful.

After she left, the nurse came in to let us know we’d be heading downstairs to Interventional Radiology at 9:15am. Jesse slept until that time. When she woke she complained of a spot hurting on her head. This is the 3rd morning she has complained about it. Once she is up and going, the pain disappears. We aren’t sure what is going on.

At Interventional Radiology, we went through the pre-surgery processing of seeing the anesthesiologist and his team mate,the operating doctor, the nurses, getting vitals, and heading to the surgery room. I had not wanted to ask how long it would take with Jesse awake. When I asked one of the nurses started pulling on my scrubs to get me out of the room. She rushed me to get undressed and out to the lobby. I told her I knew where to go. And I wasn’t going to run back into the room and put Jesse at harm.

After an hour, I hadn’t heard from them. Finally after an hour and fifteen minutes a nurse called. She said the stents went in easily. The nephrostomy tubes were left in place in case the stents failed. The bags have been removed. The plan at that time was to put some contrast in Jesse, watch it exit her body to make sure the stents worked, and remove the tubes from her back tomorrow.

At the time they told me this I thought she was getting the MIBG injection tomorrow for an MIBG scan on Thursday. The interventional radiology nurse talked with Nuclear Medicine about doing this at the same time Jesse comes for the injection.

Around 12:30pm I was finally able to see Jesse in recovery. The nurse in recovery told me that Jesse needed the MIBG injection today. The doctors have moved her MIBG up to tomorrow at 12:45pm. I felt a tad freaked out because I had not given her any SSKI drops. At home, we give her the drops starting the day she gets the injection. Here they wanted her to start taking them the day before the injection.

So Jesse and I changed courses and returned to the floor to get her SSKI drops. When we arrived it was also time for Jesse’s GM-CSF shot. Jesse missed her dose of oxycodone this morning and was bitterly complaining about pain in her left leg. For the first time, the nurse gave her the shot in the right leg. After screaming, Jesse put on her own band-aid.

The Nuclear Medicine technician arrived around 2pm to inject the radioactive isotope. While he was here, the interventional radiology nurse stopped by to see if she had peed. Jesse had not yet.

Her nurse practitioner from clinic came to see us afterwards. I talked with her about Jesse’s eyes. She told me that she’d make sure the appointment for Jesse’s eyes was scheduled. (And she has kept true to her word: Friday). She also told me that she was trying to schedule a bone marrow biopsy for Jesse. Praying that by some awesome miracle that comes back clear!! (Might be setting my expectations too high)

She also mentioned that we might be discharged tomorrow. We’ll see of that rumor really happens…

Jesse needed to use the bathroom at the same time the attending and her fellow stopped by. They agreed to come back later.

Just as Jesse finished the interventional radiology nurse called. Due to the MIBG injection being urinated out, they couldn’t do their contrast test at the same time. They will do it on Thursday. And the bone marrow biopsy will happen with the MIBG scan tomorrow. It does bit she’ll be put to sleep basically 3 days in a row, but this is what we need to do. I am really glad she called.

We waited for her to come back. By 4pm, I didn’t want to keep Jesse from checking the mail. I asked her nurse if it was okay to run down to the mail room. I also talked with her about Jesse’s pain in the left leg. She talked with the team, and they approved another 1/2 pill of oxycodone for her. This seems to have worked in getting her pain back under control.

The judgmental resident came in to ask what we needed for discharge. Since this is our first discharge we need all the medicines she is taking. We need dressing change kits; we need basically everything. I wasn’t overly nice to her, but I was firm because I am just tired of her attitude. More than likely she’ll screw up discharge impressively tomorrow… and it’ll be 8pm before we get out of here. And that will be too late to drag Jesse grocery shopping. (Thank you Kim, Daniel, and Caleb for the goodie box yesterday. I think that is going to come in more than handy tomorrow.)

It was 4:30pm before the doctor came to see us. She told us the same things that we heard throughout the day. I did ask her about the Echo/ EKG I see on the schedule for 8:15am tomorrow. I think Jesse and I’ll be going downstairs to get that done.

I remembered about 5pm that we need to change Jesse’s dressing today. That might have to happen later tonight. They have a lot going on out there right now.

Jesse did get sick around 5:30pm. The nurse hooked her back up to Fred so she could get Zofran. I think she needs to be on a running dose of that.

About 6pm, she needed to go again. This seemed to improve her stomach pain. In fact the nurse was coming to give her Benedryl, when Jesse declared she felt better.

About 6:47pm, the room service called. Jesse asked for pretzels. She has eaten nothing today because of being NPO for the surgery. At midnight, she will have to be NPO again. They called to say they were waiting on the nurse to hear from the doctor to say she could have something to eat. And now she has fallen asleep… Strangely when I talked to her nurse, she’d heard nothing from them.

That frustrates me severely. Someone keeps entering into the computer the NPO times wrong. And Jesse unfortunately suffers because of it. I am sure they have had parents feed kids when they shouldn’t, but I am not going to do that because it could cause her a great deal of harm. They want her to gain weight… but don’t make it easier for her to eat.

Thank you for the cards today from my family in North Carolina. Thank you Charlotte and Terry for your cards. Thank you Cindy,Mike, and Biscuit for the alligator cards 🙂 Thank you Meme and Papa, Marion ( I was so excited for Sarah when she was a St Bald’s ambassador and so happy for her from your posts 🙂 ), Nancy, Michelle, Ronnie, Andrew, Addie, Aubrey, and Avery for the cards.

Thank you Terri and Jim for the card aquarium.

Thank you Danielle, Sergio, Sullivan, and McKenna for the pictures and fuzzy man. Jesse pulled out the fuzzy exclaiming that Sullivan must have made it 🙂

Thank you Suzanne and Dan for the Flipeez hat. We had just seen a commercial for that this afternoon while waiting for the doctor. Jesse was so excited to put it on and wave the monster hands.