Jesse was due at clinic at 8am for labs. I figured they would want a sterile urine sample too. You have to prepare Jesse for those. She hates them because she has to been cleaned with betadine.
First the clinician took Jesse’s weight: 15.2 kg. I really think their scales are off here. Then her blood pressure: 126/80. Jesse doesn’t want to be at St Jude.
Afterwards the clinic nurse took Jesse’s blood for labs. I asked her about going home for recovery. I know she can’t give me an answer, but at least maybe she can put a bug in someone’s ear. I also asked her if Jesse needed to give a sterile urine sample. As she went to ask, I went to check the mail and get Jesse a snack card.
I was walking off the elevator, when I noticed a little girl in an orange and pink dress walking with our clinic nurse. It took me a second to realize it was Jesse. When she saw me, she jumped up and down telling me that she was finally released from isolation.
Jesse was so excited to walk with me to the cafe and get her own banana and snack pack. Then we returned to grab our stuff from the clinic room. After eating her breakfast, Jesse and I went to the Psychology Department. Since I have upgraded Jesse to my ipad, I wanted to donate her old ipad. The Psychology Department secretary had no record that the department was interested in it. She had to call someone. That person knew nothing about it either… so she told me I need to contact the first person I asked about donating it.
I called Child Life, who I had contacted first. Our Child Life specialist was surprised by the run around we had gotten. I shouldn’t have been. But she was extremely nice in coming to get it from me to figure out how to get it where it needed to go.
While we were waiting, I took Jesse to the school. Her teacher was really surprised to see her out of isolation. Jesse was really excited at the possibility of going to school with other kids. But 15 minutes before class started, clinic called to say they were ready to see her.
As we were sitting in clinic waiting, I happened to look at Jesse’s back. I saw a new freckle with a red spot. Crap. And even bigger crap because I said out loud, “Dang it, you have a tick!” The minute I said it I regretted it because Jesse started squalling like I was doing open surgery on her without sedation.
A few minutes later, the nurse practitioner came in. I asked her for alcohol wipes and tweezers. She looked at me puzzled. I explained Jesse has a tick, and this is the way I know to get them off. She commented that she had never seen a tick and had no idea how to take them off.
I took the first one off. It didn’t look like the head came completely with the tick. So I asked for a needle to scrape the rest out. The poor medical student with the nurse practitioner got a trail by fire. Jesse was screaming her head off, and I was calmly asking her to hold still so I could get it out.
Then I figured I should double check her all over. Found a second one on her butt. The medical student was asking me to please not find another one. The second one looked to have the head come out too, but I am feeling a little paranoid because I would hate for something to happen. Especially since Wednesday we are starting chemo.
Once we finished with the ticks, the nurse practitioner went over Jesse’s medicine list to get her ready for admission. Then she left to get the doctor. He came in at 11am catching me digging through the trash looking for the ticks because the nurses threw them away (found one). I wanted to keep them in case we need to have them tested.
We talked about radiation and getting Jesse home for recovery. Because Jesse is a relapse, he had no trouble with me taking her home. He even mentioned that she could leave if her ANC was 100 (which is 0). If this is the case, I will rent a car to bring Jesse home. The fewer people we are exposed to, the better.
He also told me that our radiation oncologist in Virginia was not releasing information to St Jude’s radiation oncologist. I get the feeling he really feels that St Jude is the best place for Jesse to have radiation. While I agreed with him in the moment due to Sentara not really wanting to deal with kids, I don’t think Jesse will be able to stand being away from home that long. And while I am not a fan of the radiation oncologist back home, I know that we will see our home oncologist and clinic nurse, who always have had Jesse’s best interests at heart.
He said the social worker was looking for us, but since we’d gone home they couldn’t get the release signed. After texting with Melinda, she suggested that I call Sentara’s radiation to see what I could get rolling. I talked to a very nice lady, who started calling St Jude to see what she could get done for us.
I also called our clinic at home. Turns out that our clinic nurse had sent the request to St Jude’s awhile ago, which is what I figured had happen. She sent it to someone here at St Jude, who passed it to someone else, who passed it to someone else… and well it didn’t get done.
Around 3pm, the social worker called us. And basically it came down to they didn’t understand CHKD is separate from Sentara. Once I explained this it made total sense for the release forms. We traveled over to hospital again. The social worker took us to the Medical Record Room in the basement where I signed the forms to allow both doctors to share information.
As we were leaving my phone rang. It was the nurse practitioner calling again. She’d called earlier telling me how I needed to get the radiation records released (half the information was misinformation). This time she was calling to tell me that I could stop giving Jesse sodium bicarbonate. Funny thing was we’d talked about Jesse’s medicine list earlier in the day… I listed all the drugs she is currently taking. Sodium bicarbonate is not one I listed. Jesse has not taken sodium bicarbonate in 2 weeks. Since we were in the building, we walked over to let them know.
Later she called again asking if Jesse was taking ativan for a “bad” reason (I am guessing she means anxiety?). I told her Jesse needs it nausea. Then she called at 5:30 saying they needed a sterile urine sample from Jesse. I had asked them at 8am if Jesse needed to give them a sterile urine sample. I told her we were not going back over there today. She said it was okay to wait until Tuesday. I am getting really tired of her disorganization.
At 6:30pm, Triage called me asking where we were. I told her at the Grizzlies. Turns out that the nurse practitioner put the order in. The triage nurse admitted to me that she had not looked to see if there was a note attached about us waiting for it till tomorrow. So I don’t know if there was a note or not, but the triage nurse told me she would add a note. This also raises red flags about their computer system. People are either finding it too complicated to fully look at things or too time consuming.
I am a little concerned that even though they have released Jesse from isolation someone is going to come along and put her back in isolation just because they haven’t got this clean sample yet. They have given her a taste of freedom. She is going to be crushed if this happens.
I am impressed with how quickly our home radiation doctor’s office got on the ball to see what needed to be done from their end to get Jesse’s radiation figured out. I am tired of dealing with incompetent people. Yes we will have to drive back and forth, but we will be with people who are organized and act like they want Jesse to survive. Not like a number shuffled through the system.
Thank you Barabara, Alan, and Skilly for the Easter basket. Jesse loves the egg craft. Thank you Coco, Kathy, and Malakai for the food and Easter basket. Jesse is enjoying the art kit.
Thank you Elsie and J.C. for the Easter package. Thank you Mom for the food. Jesse ate the chips. Thank you Robert, Loretta, and Timothy for the books and goodies. Thank you Inez for the package. Thank you Mt Pleasant Baptist Church Tuesday Morning Bible Group for the stickers. Thank you Tracy, Shelia, Jessica, Emma, Kaydee, and Sis for the package of goodies.
Thank you Cindy, Mike, and Biscuit for the Groucho Marx card. Jesse got a kick out of the glasses. Thank you Jim and Jackie for your card.
Jesse did receive other cards. I have held those because she opened things so fast today I couldn’t keep up. And it will give her something to look forward to opening tomorrow. 🙂