Long Few Days

The past few days have been very difficult to watch. It’s hard not to want to snatch her up and start running, but I know that I can’t really out run what is going on. All we can do now is make her as comfortable as possible.

On Wednesday, the doctors and nurses suggested that a morphine pump be set up in case she needed it. As hard as it is to think about your child being on morphine because they are in that much pain, I am okay with her having it. Anything to keep her comfortable as we can.

By Wednesday afternoon, a fever had begun. This is par for the course with the chemo that she received. Her interest in food began to diminish too. Now I think that was in part to the sores beginning in her mouth and along her GI Tract.

On Thursday, Mike came so that I could go home for our St Baldrick’s event in Williamsburg. While I was gone, Jesse’s fever reached 105 degrees Farenheit. The doctors also made the decision to put her on continuous morphine and 3 antibiotics. We were able to skype her into the event so that she and Mike could see a little of what was happening. Even though she felt bad, Jesse waved and tried to look cheerful. She didn’t stay awake for everything, but I was happy that she got to see a little bit. 🙂

I returned to the hospital on Friday afternoon. Mike and I both stayed with her that night, but he was exhausted from the night before and was out before too long. I stayed up with Jesse giving her Tylenol when she needed it and holding her bucket when she needed to throw up. Her heart beats per minute reached 206 at one time. Normally her heart beats per minute are around 128.

Saturday morning began with a fever around 103.8. Jesse stayed awake for most of the day. In the afternoon, 2 nurses came in and began looking very closely at Jesse Central Line (also called a CVL). They told me they could feel a small air leak in the line, and they had called the IV Therapy person on duty for the weekend.

I began looking at Jesse’s line when the nurses left. I found where the small pin hole was… down at the very end of her red line…. And it had to be repaired… and repairing it meant that her CVL couldn’t be used for at least 4 hours.

The IV Therapy lady arrived. We didn’t hit it off very well. And that’s probably putting it nicely. Mainly because I got the feeling that since she does IV therapy for a living she knows best… and she just doesn’t really listen (I found out later it’s very common for the nurses to have to get a little forceful with her to get her to listen… and she did do a good job in the end… and I let her know she had made me angry.)

Note: I didn’t want anyone to get confused about other nurses in the hospital. All the nurses that are the ones in charge of Jesse’s care are some of the best people I have ever met. They have loved her as their own child, and I see them love other children as their own too. The IV lady works on all floors of the hospital, and I am sure that all have their own procedures.  I don’t want to see this lady get in trouble; that isn’t the purpose of my post. The purpose is only to tell what happened and that I stood up for Jesse’s safety. And you should always question things if you are not sure of what is happening.

Due to her CVL being unusable for 4 to 6 hours, they needed a pic line in her arm. First the IV lady tried Jesse’s hand. Blew that vein. I have made the decision that I don’t think I will allow her hand to be poked anymore. The vein is too small… it always blows and subjects her to a second poking… Plus on top of this the IV lady was giving her lanicane to numb her hand.. and that didn’t work because Jesse was screaming bloody murder with every prick.

When the hand blew, the IV lady headed for her right hand. I redirected her to Jesse’s elbow. Most mothers don’t want it the IVs in their elbows was her reply. I do because she has the pulse ox monitor on that hand anyway… and when that is on her finger she refuses to use that hand! I should have asked her if she knew my kid?

As the IV lady is pricking Jesse she is carrying on about how she has to hold still and really must be asleep for her to be able to do the CVL repair. She’s 2 and you’re poking her! What do expect her to be a statue? The kid is doing great with you pricking her and having 3 people holding her in order for it to happen!

Once the line is in the IV lady goes to prep the repair kit and supplies. Jesse is exhausted and falls asleep (very convenient because that lady would have pushed for some knock out drug I’m sure).

She wanted to relocate Jesse from her pressurized room with the double doors to the treatment room (where other kids have been that might be carrying a cold or other bacteria… not that kids can help it… we just have to be really careful about that). The nurse tried to explain to the IV lady that Jesse is so neutraphenic now and for the next 100 days that she can’t even have an apple. I don’t think the IV lady listened to her because the nurse came in the room and told me the IV lady wanted Jesse move to the treatment room.

Bless the hearts of all the nurses up here on 8B… I am sure they get caught in the middle of so many many things! I looked at the nurse and told her “I’m very sorry to use this word, but you can tell the IV Lady to ‘F’ off. We’re not leaving this room.”

While the IV lady was prepping her repair kit, I asked the nurses if we could change Jesse’s tape. It was due the next day anyway, and I could see this lady ripping the tape off of her. Something I didn’t want to subject Jesse too. Tape changes using detach all are torturous enough for her.

The CVL repair happened right here in the room. When the IV lady came in she said something that I don’t remember now, but I remember replying to her in a way that quickly changed her tone. I think that it had to do with her tape change. I do remember saying to her in a hateful tone ( I know horrid of me and I am not really proud) something along the lines of I didn’t want you ripping it off of her.

Then I climbed right in Jesse’s bed, held the old CVL for the IV lady and the nurse since the IV lady had on sterile gloves and Jesse was grasping the nurse’s hand in her sleep. At one point, the IV lady had me put on sterile gloves to help hold the repair spot together so she could super glue it.

By the end of the repair the white line was working, but the red line was not and at this point still isn’t. The IV lady is supposed to come back today to put TPA in the line to open it up. They think that a clot occurred higher in the line before they could heprin it. The TPA will take an hour to work, and hopefully the red line will reopen. It’s now noon… and I haven’t seen hide nor hair of her… she probably forgot.

At 10:45pm last night, the nurse started using the white line of her CVL. So far so good 🙂 I will be watching to make sure that everyone flushing her line from now on use the push pause method. I really don’t want her to have a surgery to replace it. The doctor on the floor told me that if they had to right now, they would have one in her neck for temporary until the new one was ready to use.

This morning Jesse is sleeping. She was awake most of last night. As for her fever, it did reach 104. I noticed taking Tylenol was extremely painful this morning. And when she threw some of it up, she also threw up some tissue. This is because of the mucositis and the lining of her esophagus sloughing off. In fact our night nurse said it was the worse case she had seen. Bummer 🙁 But hopefully this is rock bottom. Thank you everyone for the prayers.