Today Jesse and I met the line nurse at 9am. This is the only thing for today that has gone smoothly.
She cut the sutures from around Jesse’s line, which looked to be holding a lot of junk. Jesse whined through the entire procedure because of some notion she had in her head it would hurt, even though we told her it would not. At the end, Jesse even said, “Wow that didn’t hurt.” I really enjoy not being believed.
Then she whined through finishing the tape change. She complained about the betadine hurting. Luckily afterwards, she stopped complaining. I left Jesse to go get her sodium bicarbonate and il-2 shots. The only thing ready was the sodium bicarbonate. Turns out someone on the floor decided to discontinue the il-2 shots after the first one on Wednesday. She needs 6 shots total over 12 days. The girl at the counter felt awful, but it’s not her fault. She is caught in the middle of people not paying attention, who really need to be paying attention.
The pharmacy called clinic to see if Jesse was supposed to still get the shots. They can’t just take my word. It would take about 45 minutes for the prescription be filled. I returned to Jesse to wait. There was no point in leaving clinic, then dragging her back over to go through the isolation procedures again. At 10:30am, they called that the shot was ready.
When I arrived at the window, the girl gave me 1 shot. I looked at her puzzled because Jesse should have had 3 shots in the bag (or at least that is how they have done it before). I asked her about this, and she went to ask the person who filled it. Turns out they read the script wrong. After 15 minutes of waiting, the other 2 shots were ready. Jesse and I headed out the door thinking that we were free of St Jude’s for the rest of the day.
I started laundry and ordered us some lunch about 11:45. At 12, my phone rang. It was the nurse practitioner saying that Jesse’s urine culture came back positive. She had written an order for her to get nitrofurnation for 14 days/ 4 times a day. Then she asked if we’d left already. We had. It would be so nice for them to work out a system to send medicines over to kids in isolation.
I waited till after we ate our lunch to carry Jesse back to get the medicine. The nurse in isolation was extremely kind in letting Jesse sit with her while I grabbed the medicine. As we were walking over Jesse sneezed because of the sun. I didn’t think anything of it, and since we didn’t take her mask off while over there, I didn’t see the blood till we returned to the Grizzlies House.
At the pharmacy window, they had just received the order. Craziness because the nurse practitioner told me she was hitting send at 12 when we got off the phone. I guess the bright side is at least they did get it.
With Jesse’s platelets being 31 yesterday, I had a really strong feeling they had tanked further. Mind you it was not a great deal of blood and looked to have stopped on it’s own. I grabbed the laundry from the dryer. Then called the Medicine Room as I was told to do, who transferred me to D clinic, who said come on over.
Jesse did not want to go back. I didn’t either for that matter. We entered the isolation door, suited up, and were lead to clinic. In clinic, they took two vials of blood. And then sat waiting for 2.5 hours. Finally at 4:30, the clinic nurse came with the counts and to take us to the Medicine Room. I really think that being 4:30 on a Friday afternoon, they needed to get rid of us so they could leave for the day. When 5pm hits around this joint… if they don’t have to stay late, they won’t.
About 5pm, a nurse finally came to the door to ask what Jesse needed to drink with her Tylenol. When she saw that Jesse had a drink, she asked about a warm blanket. She returned a few minutes later with Jesse’s pre-medications and the warm blanket. Before I would let Jesse have the blanket, I asked the nurse to take Jesse’s temperature. I didn’t want the warm blanket to cause a false reading.
After taking her vitals, the nurse gave Jesse her Tylenol and then started infusing the Benedryl. Jesse zonked in 15 minutes. At 5:30pm, the platelets were finally hung. Jesse’s platelets were at 17 this time, but for some reason they only gave her a 1/2 bag. I have a strong suspicion we’ll be sitting in the medicine room tomorrow waiting for platelets.
By 6pm, the platelets were complete. A different nurse walked us out. My first impression of this woman was not great. But as she finished Jesse’s platelets and walked us out, I got the very strong suspicion that of the many people we have met here, she is one of the ones that truly, truly gets it. She looked so guilty that we overheard a co-worker of hers talking about her trip to the Bahamas next week. I guess she could sense that I have reached the point of totally hating this place. I wasn’t nasty to anyone. I just wasn’t overly friendly.
I ran Jesse and I through the rain back to Grizzlies. We were 30 minutes late on her shot. I gave that to her as soon as I could. Plus gave her the il-2 shot. Now the ethanol dwell is waiting for it’s 2 hour mark in her lines. Jesse is watching Frozen again… giving me the play by play.
I have a feeling tomorrow we’ll be back in the Medicine Room. Jesse sneezed tonight and there was no blood. But her ANC dropped from 3800 yesterday to 1600 today. Either Saturday or Sunday, she’ll need more red blood cells. And by Monday, she will more than likely need blood if her counts continue to fall. Now we need her ANC to start climbing. She needs to get out of here, and so do I. I hate the lack of windows to see outside. I hate living in a cave. I hate the hospital doesn’t have windows in all the rooms.
Thank you Aunt Carolyn and Uncle Jerry for the activity book. Thank you Laura, Glen, Anthony, and Alison for the book (Jesse has really enjoyed reading it), card, J, and stickers. Thank you Ruth for the card. Thank you Valerie for the hats. Jesse loves her ladybug one. Thank you Mom for the card and stickers.