Day 60 at St Jude

Yesterday was an improvement over earlier this week. The triage was running on time, and Jesse labs were drawn on time. Her weight has increased to 15.4kg. Jesse was really calm getting her labs drawn. I am starting to think it is that one woman Jesse has associated with being evil or something. When we see her, Jesse’s blood pressure reads high.

Then we went to clinic to wait for the results. I tried to get Jesse into the cafe to maybe pick out something to eat. The minute we walked in, Jesse was covering her nose and complaining of the smell. I took her to the clinic to wait for her appointment.

At the appointment time, they called us back. Jesse’s red blood was a little low – 7.7. This meant a transfusion of red blood in the Medicine Room. The blood would take about 90 minutes to get ready. Her ANC has dropped to 15900 from 16800. The nurse practitioner also agreed to give us fluids and zofran in the eclipse balls through Monday.

I decided to have us wait for the Medicine Room call in the A & B Clinic waiting rooms. The only plug available to charge Jesse’s iPad was located on the wall nearest the kids play area. This actually worked out great because it allowed me to be close to Jesse while she played.

There was a family from India in the area and another little boy. The little boy was sweet, passing Jesse the crayons. Soon he was called back for his appointment. As he was leaving, another little boy about 4 or 5 weighing 90 pounds appeared. First he was banging a drum and looking around to see if anyone was going to react to him.

Then he sat down next to the little girl from India and began asking her why she talked so funny. Then he would mimic her mom and her as they spoke to one another. The Indian mom is obviously a saint. She tried to engage him in conversation asking him what he was playing with. His response to her was: “It’s a pirate ship. What are you, stupid?”

He then moved onto a xylophone near me and began whacking it with all his might. He looked at me (I could see him from the corner of my eye as I was working on my computer.) “Woman don’t you hear what I am doing.” I didn’t even dignify the little cretin with a response. It’s obvious that his home life is horrid. And I would be willing to bet that whatever town he crawled out of has a reservation for him already at their “finest hotel” complete with reservation number.

He then headed for Jesse’s IV bag. And that is when I got him. All I had to say was “Don’t touch that.” And he disappeared. The entire time the whatever she was with him never took her eyes off her phone. She did say one time to behave, but made no move to enforce that.

After he left, we saw some folks we’d gone to the Harlem Globetrotters game with. Really good to run into them, and hopefully they are on their way home today. I did the ANC dance last night because her ANC being low is what is keeping them here. Thank you Helen for Jesse’s picture. She was so excited 🙂

As we were talking the Medicine Room called us back to start the transfusion. After medicating Jesse with Tylenol and Benedryl, the nurses started the infusion. Because Jesse only needed a 1/2 bag, the transfusion was done in 2 hours. Jesse was bored and asking for a craft. The nurses paged child life, but we never heard back from them.

I think this week here is really slammed for some reason. I overheard a lady telling someone they were having to stay at the Crown Plaza because the Grizzly House was full. The parking lot at RMH has been really full too.

While we were waiting, the IV nurse called. She was in disbelief that they’d allowed me to have IV fluid bags for Jesse. “Do you know how to change them? Who taught you?,” she demanded. “Do you know about this?” I told her yes on all accounts. Sheesh, the people here treat me like I am trying to take her out sometimes. I told her that I had changed the one she was currently using given to me by pharmacy. This seem to placate her. She still wasn’t happy that I was being allowed to give her IV fluids.

Jesse and I left after her transfusion. She wanted McDonald’s, and I wanted to see if Jesse’s glasses were ready. We went to the optical store first. The store was open, and the glasses were ready. They look great on her. I’d been imagining she’d have thicker glasses.

Jesse was thrilled. She immediately looked through the top of the frames to see far away, and then the bifocals to see up close. The owner of the store began telling Jesse how she need to look through the glasses, then realized she’d already figured it out. The lady is very nice, but she is interesting. I was afraid we’d be trapped for an hour with her again when I really needed to get Jesse back for her meds. Luckily another child came in after Jesse, and she had to wrap things up with us. Thanks kid!

Back at RMH, Jesse ate her McDonald’s. I did some work, and Jesse did some homework. We are caught up for the moment with school work. Later on we talked to her cousins, dad, sister, and grandma.

At 5pm, I gave her her shot. Always a joy (sarcasm).

Thank you David B. for the squeeze head. We got the best laugh from that. And thank you for the Etch a Sketch. Jesse was mesmerized. She told me she’s only see small ones. 🙂

Thank you for the masks and stickers Uncle Greg and Aunt Beverly. Jesse opened one and is saving the other for Chris.

Thank you Cindy, Mike and Biscuit for the snacks, penguin card, bracelets, and postcards.

Thank you Carolyn, Jean, Uncle Greg and Aunt Beverly, Betty, Knob Creek Church, Aunt Carolyn and Uncle Jerry, Joseph, Pat (and the picture of bears), and Mt Pleasant Baptist Church Tuesday Morning Bible Study for your cards and well wishes.