July 4 & 5, 2015

July 4, 2015

fireworkI woke at 7 am to get ready for Jesse inpatient admission for cyclophospormide (cytoxan) and fludarabine.

At 8 am, the nurse called to say they were ready. I finished cleaning up our room, dressed Jesse, gathered our belonging, and headed for the hospital.

Unfortunately outside the wagon we’d been using was gone. Jesse was not happy about this at all because it hurts her to ride on my shoulders. But it hurts worse to walk.

We arrived at the River check-in desk at 8:45 am PDT. The security guard gave me a badge and directed Jesse and I to the 7th floor in the Forest Building. This is the newer building, and houses the ER too.

I grabbed a wagon, and we headed to our room.

The rooms are very nice with fridges, a semi-comfortable bed for me, the Get Well Network for Jesse, and plenty of space.

Jesse was in a great deal of pain when we arrived in the room. I placed her in the bed. And she did not ask me to get into the bed with her. This is normally a sign she is in a great deal of pain.

The nurse let us know the doctors would be in around 10:15 to see Jesse. She also requested a urine sample before we could start chemo.

At 10:30, the doctors had not come in. I tried getting Jesse up to use the restroom. She sat on the toilet for 95 minutes with no luck. While she was there, a pain doctor came to talk with us.

She requested an extensive history of Jesse’s pain medicine. We decided to change her to a new half of fentynol patch. The doctor had a hard time with concept of a half of patch. Being that our patches from home are flat stickers, I didn’t fully understand until later the disconnect. (They use patches with gel inside them here).

We also decided to try diluadid. I feel that with the oxycodone Jesse has more urinary rention the more she takes. She also agreed with nurse on ordering a lasik to help Jesse pee.

As we were getting ready to give Jesse her lasik, Jesse successfully peed on her own.

Around 1:30 pm, she was given zofran through her pump. At 2 pm, the fludarabine was given, and at 2:30 pm, her hour infusion of cytoxan began. As this was occurring, Jesse’s temperature began climbing and falling. The highest her temperature climbed to was 100.5 degrees Fahrenheit. Then it would drop to 99.1.

The doctors came in to briefly see us. And then moved on. In their mind, we are a complex case here for two days of chemo.

When the cytoxan completed, Jesse still had 4 hours of hydration left.

From the diluadid and chemo, Jesse was interested more in being asleep. She would wake for spurts, eat a little fruit, and fall back asleep.

By 3 pm, Jesse’s new fentynol patch had still not arrived. When it finally did, we had to place a clear techaderm tape under half of the patch.

By 8 pm, Jesse was out. She had requested more diluadid, benedryl, and we gave her a lasik. I talked with the resident about Jesse’s continuing pain. Even with all the drugs, she is staying at level 6 on the pain scale. We decided to keep things as they are because really it is the chemo that will make a difference.

I went upstairs around 10 pm to watch some fireworks and take a little video for Jesse.

July 5, 2015

Jesse woke at 6 am. She asked to sleep with me on the couch bed. I take this as a sign she is feeling a little less pain. She is also a little less whiny, but as afternoon goes on… this might change again.

When the nurse came in, they told me Jesse’s temperature stopped popping up at 4 am. And from that point forward seemed to sleep more comfortable.

The doctors came in around 9 am. They gave us the option of leaving tonight or staying. I told them it would depend on what her temperature does. And they decided to wait until this evening to evaluate if we should stay or go back to RMH.

The pain doctor returned to check on Jesse. While Jesse is saying she is still at a 6, I feel it is a better 6 than yesterday. She is wanting to sit with me today. She has not been asking for hot packs as much, and has fallen asleep with only the fentynol patch being on.

Around 1 pm PDT, the clinician came to take Jesse’s temperature. Being she has fallen asleep sitting up in a chair, I figured it would be up. And it is 100.5. I noticed a few moments ago, she is sweating.

We will be starting chemo in about 30 minutes.

Posted in Jesse Updates, Seattle
2 comments on “July 4 & 5, 2015
  1. Christina Smith says:

    I am praying that Jessie gets some relief and this trial goes well for her. I cannot imagine what you are going through. As a parent I would do anything I could should Sam need anything. I’m lucky Sam is fine. I hope you get the same chance with Jessie. Please know I am keeping your family in my prayers. I have shared your story with fellow C.W. coworkers who remember you. If there is anything I can do to help you out, please let me know.

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