This post and the next few posts are old ones. After this week I talk about in this post, I just had a really hard time catching up... It was completely miserable for all of us, and I don't know how we got through it, but we did.
On Wednesday July 18th, Jordyn started to be very quiet. A different home health nurse than usual had come that morning and her picc line wouldn't draw back blood, so because she was getting a port put in the next day, the nurse did an iv line instead of ordering stuff to get it working. That was rough, and she blamed Jordyn for moving her arm, and making the catheter come out, which she didn't move her arm, I had her arm in my hand the whole time and it didn't move. That evening, she had a fever, so we had to take her to the ER. Every time she has a fever, we have to take her in because they don't take any chances when a child has leukemia. A fever is a sign of a possible infection, and bacterial infection is a huge cause of death for kids with leukemia. So, when she has a fever, she goes to the ER and they give her antibiotics just in case there is a bacterial infection they want to do all they can to keep her well. Anyway... The picc line still wasn't working, so they did another iv... So she was in the ER until late that evening, and then we had to be at the hospital the next day at 8am for clinic and a scheduled surgery that we weren't sure was going to happen or not because she had a fever the night before.
We got to clinic at 8 am and her picc line still wasn't working, so they put tpa in it and got it working so they could draw blood for the 3rd time in 2 days, as well as be able to give her iv chemo. The doctor there that day wasn't her usual doctor either so that was hard for her too. He decided to let her go to surgery because she seemed okay even though she had a fever the day before. Her hematacrit was low and so they decided she needed another blood transfusion. It takes awhile for the blood to get ready and to get started after they order it, and then they run it pretty slowly.
By the time that was almost done, the nurse realized her sugar was low also, and they needed to give her some d5.
It is 2:30 by this time. She hadn't eaten since midnight because she had surgery scheduled at 10 that day to place her port. She was exhausted from being up so late the night before, and so early that morning.
When she did wake up, she was very upset, but she still wanted me to carry her to the car, even though she was sooo mad at me and so mad at what she was going through. At 8pm, we were able to go home. When we got to the car, she refused to buckle her carseat... I talked to her about and tried to reason with her, but she was just so upset. By this time, neither one of us had eaten all day, and we were both tired and frustrated and I was very ready to go home. I called Jacob on the phone after I tried for about 30 minutes to get her in unsuccesfully. I was almost in tears because I felt so helpless and it was such a hard day and my daughter was shutting me out. Jacob was at work, but he called and had a security guard come help me out. It took about 25 minutes and then we ended up forcing her in because talking wasn't working. She was scared because her port was where her seatbelt goes and she also had an incision on her neck. We were very careful and she didn't get hurt when we buckled her in. I couldn't have done it on my own. She cried a lot on the way home, and when we got there, she went and hid in corners and screamed and cried. She went to the bathroom and wouldn't get of the toilet because she didn't want to unless her dad was there. She was not herself at all, and I was extremely concerned about her because she was shutting the entire world out...
She gave me the silent treatment until Saturday, and then she finally started talking to me again, until she had a fever that night and had to go to the ER AGAIN... Ughhh... More silent treatment... On Sunday afternoon, she got a rash. It was everywhere... We took her to the clinic on Monday to have them look at it in hopes of avoiding another ER visit. That night, she had a fever... We were in the ER until around 5:30 in the morning on Tuesday. When we got home, she still wasn't speaking to me, but she didn't want me to leave her. I slept in her bed because she was so scared... She was completely traumatized that week and she had a hard time recovering both physically and emotionally...