Friday, November 25 at Dell Children’s for Immunotherapy, Round 4.
Midnight- Vital signs, temperature is 101.1. Phoenix is super restless and congested.
12:10am- Our night nurse, Tish, comes in to give Tylenol and listen to Phoenix’s lungs.
12:15- Our night nurse practitioner comes in to listen to his lungs (since he sounds so congested and rattily).
12:20- Tish comes in to give a normal saline bolus, since Phoenix has not peed in a few hours.
12:45- Tish comes in to check on Phoenix’s breathing, and tries to untangle all of his tubes and monitor cords.
1:00- Machine beeps, signaling the end of the saline bolus. Tish comes in to unhook the saline bolus, and also to turn off his continuous pain drip (since his Chimeric Immunotherapy infusion ended 2 hours prior).
1:20- Tish comes in to give Lasix to help draw some fluid out and help Phoenix to pee.
1:35- Monitor starts beeping due to an occlusion in one of his lines. I press the call light to ask Tish to come in and check it.
1:45- During blood cultures Thursday night, they were not able to draw blood from his port, so ordered Tissue Plasminogen Activator (“TPA”) to flush the port. This finally arrives from pharmacy, so Tish comes in and administers to Phoenix.
2:00- Tish comes in to check Phoenix’s vitals, and I change his diaper.
2:30- Phoenix is having a hard time sleeping due to his breathing, and being generally uncomfortable. He keeps talking in his sleep, yelling out for water, and wanting to be held.
4:00- More vital signs.
5:00- Heart rate is super fast, making the monitors go off. Tish comes in and checks his temperature, which has risen to 103.6. Phoenix is fussy and not feeling good at all. Motrin given, and he calms down and falls back to sleep.
6:00- More vital signs, temperature is back down to 100.
7:50- Phoenix wakes up and says “Change diaper!”, so I get up and start to change him and realize the diaper has leaked on our bed again (due to the many meds and fluids he is given).
8:00- Change diaper and get Phoenix dressed. So happy that he feels pretty good right now and wants to play for a minute. It is hard for him to walk right now (plus he is connected to many, many tubes), so he plays by the bed.
8:05- Call Ben to check on him and Shiloh. They are up, Shiloh is playing and Ben is doing laundry that I sent home with him yesterday. We coordinate about when they will come up to see us today and what we need brought to us (clean sheets and pajamas for Phoenix).
8:10- Try to call my sister, Emily. I missed her call this morning while we were sleeping.
8:15- Our nurse (Catherine, yay!) comes in to say good morning and check Phoenix’s vital signs. She also helps me change the sheets again. We weigh Phoenix (he gets weighed twice per day to make sure he is not retaining too many fluids). He is still up 1kg from when we were admitted, so they will most likely talk about giving more medicine to help draw the excess fluids out from his body.
8:30- Phoenix is tired from playing for a few minutes, so he lays down.
8:35- Our nurse practitioner comes in to do a first check on Phoenix before rounds this morning (so she can report to the team on how Phoenix looks this morning).
8:45- Phoenix sits up and his monitors start beeping wildly due to his heart rate going up- our nurse comes in to check on him.
8:50- Phoenix watches a little “PJ Masks” while I straighten up the room, drink some coffee, and check my email. Feeling pretty sad that we are not headed to the Christmas Tree Farm like we always are the day after Thanksgiving…but really hoping we will be released tomorrow so we can go on Sunday.
8:55- Catherine comes back in to give Phoenix his morning medication- 4ml Bactrim, 10ml Acyclovir, and 1.9ml Gabapentin.
9:00- Phoenix gets up to play again by the window.
9:15- Another diaper change, and the Phoenix lays back down again.
9:30- Phoenix starts to get upset, asking if he can go walk. (We can’t leave the room during this round of treatment.)
9:40- The doctor on call comes in to check on Phoenix and go over the plan for the day. All of his numbers look more stable than they did yesterday,so they are getting everything ready to start his Chimeric Antibody infusion.
9:45- The doctor comes back in and says she changed her mind, and decided to order a red blood cell transfusion for Phoenix, since his Hemoglobin is low, and they want his body to be as ready as possible to help with the antibody treatment.
9:50- Phoenix’s Interleukin 2 (“IL-2”) lines starts to beep, signaling that the 24 hour infusion is complete. Catherine comes in to switch out the syringe to begin the next 24 hour infusion. This is another component of Phoenix’s Immunotherapy that runs 24 hours a day Tuesday- Saturday while we are inpatient.
9:55- Call Ben to update him on the plan for the day. He is getting Shiloh in the car to come up and visit, yay! Juana comes in to clean the room, she is so sweet and really seems to care about Phoenix (and all the other patients). Today she tells me that she wishes she could trade places with Phoenix so he could be healthy and go home…so sweet.
10:00- Catherine comes in to do a blood typing screen to send off to the blood bank to order his red blood cells. She also begins an infusion of Benadryl through the syringe pump to begin getting him ready for Chimeric later this morning.
10:05- Phoenix falls asleep (from the Benadryl). The pump starts beeping, signaling the Benadryl infusion is complete.
10:06- Catherine comes in to turn off the Benadryl and flush his line. She gets a call from the Blood Bank that Phoenix’s blood cells are ready to be picked up.
10:15- Ben and Shiloh get here! Phoenix wakes up, and at first is upset to have been woken up, but then super happy when he sees them.
10:20- Catherine checks Phoenix’s vital signs, and begins his blood transfusion.
10:30- Shiloh turns on Jackson Five’s “Santa Clause is Coming to Town” and sings and plays.
10:35- Vital sign check again.
10:45- I take my shower while Ben sits with Phoenix (and helps him brush his teeth) and plays with Shiloh.
10:50- Vital sign check again, and another diaper change.
11:00- I start packing up the room a little (we are hoping to be released tomorrow!).
11:10- Ben goes downstairs to the cafeteria to get us some lunch, Shiloh and Phoenix are watching a movie and resting.
11:30- Ben brings lunch in, and we all have lunch together (Phoenix doesn’t feel like eating, but at least we get to all sit together).
11:35- Get a call from my parents that they are going to come up today around 3. Great news, visitors really help to pass the time!
11:45- Another diaper change for Phoenix. Machine beeps, indicating that blood is done. Catherine comes in to take down the blood, and give Lasix to help eliminate some of Phoenix’s extra fluids to reduce swelling and other side effects of his immunotherapy drugs.
Noon- Another diaper change. Shiloh and Ben go to the playroom for a bit. Dell has awesome playrooms that both Shiloh and Phoenix love. Our 4 North playroom is made possible by The Kelly Davidson Pediatric Cancer Foundation, and we are so thankful for them.
12:05pm- Phoenix is up again, and wants to count his stickers (“2, 4, 10, 10, 6, 10!”), and play for a bit.
12:10- Phoenix’s PCA (continuous pain drip) comes unhooked from his broviac tube, so Catherine has to take down the whole pump and replace the tubing and pump.
12:15- Catherine starts a saline bolus to prep Phoenix for the Chimeric that is about to start. He also gets a dose of oral Tylenol, Zofran (to help combat nausea), and a Dilaudid bolus to get him ready to combat the pain that occurs with Chimeric. Phoenix is allergic to Morphine, so Dilaudid is a sister drug to Morphine that we use instead.
12:35- The saline and Dilaudid bolus are complete, so Catherine comes in to start the Chimeric. Due to the blood transfusion, we are 1 hour 45 minutes behind schedule. This is nice in one way, because it is allowing Phoenix to feel better for longer this morning, but it means that we won’t finish with Chimeric until well into the late night/early morning of Saturday.
12:40- Vital sign check, and Chimeric starts. Phoenix’s temperature is 103.9 which is expected while he is getting immunotherapy drugs, but still doesn’t feel good. Phoenix is laying down, watching nursery rhymes, and singing. I can’t believe how good he is acting with a 103.9 fever…he’s amazing.
1:00- Vital sign check and another diaper change. Shiloh and Ben come back from the playroom. Phoenix sits up and wants to eat some Ritz crackers and water (his first food of the day).
1:10- Another vital sign check, waiting to see if the doctors want to give Motrin for fever since he already got Tylenol.
1:15- Ben loads up the car with some of the stuff we have accumulated over our almost 2 week stay. Shiloh takes a look at all of Phoenix’s medicine. She is super curious about all of this medical stuff, and says she wants to be a doctor and a scientist (and the tooth fairy) when she grows up.
1:30- Another vital sign check, temperature came down just a little.
1:45- Vital signs again, temperature down to 101 from the Tylenol working its way through his system.
1:50- Ben and Shiloh leave to go home. Really hoping we are all home together by this time tomorrow!
2:00- Phoenix is laying down again, so I sit next to him and read by the window. We are lucky to be in or favorite room at Dell that has a beautiful view. As much as we wish we were home, and not going through this- we can’t say enough good things about the staff at Dell as well as the facility.
2:30- More vital signs. (Temp is 99.9.)
3:00- My mom arrives (My dad had strep throat earlier in the week, so couldn’t come up to see us after all.), and Phoenix wakes up from his nap to play for a bit.
3:30- More vital signs, temp and blood pressure holding steady around 100.
4:00- Phoenix is tired from playing, and wants me to hold him as he falls asleep. My mom and I talk while I am holding Phoenix, and I eat the wrap that my parents brought me for dinner.
5:15- My mom leaves, I lay P down on his bed, and check my email.
5:30- Vital signs- temp is back up to 103.8.
5:45- Tylenol time, hoping that helps bring the fever down. P is uncomfortable, wants me to hold him and falls back to sleep. All the meds he is on cause him to talk in his sleep, he keeps saying “No, thanks”.
6:20- Our night nurse practitioner comes in to check on Phoenix.
6:30- Vitals again, temp is 104.1. Ben and Shiloh call to FaceTime while they are having our weekly Pizza and Movie Night at home.
6:35- Two nurses come in to take blood cultures on Phoenix, since he has a fever over 100.5 and it has been 24 hours since his last cultures. These will check to see if infections are the cause of his fever.
6:55- Blood cultures are done, and we give Phoenix Motrin to help bring down the fever.
7:00- Catherine leaves for the day, and we wait for our night nurse to come in.
7:05- Phoenix’s oxygen saturation levels keep dipping low, and his monitors keep going off. Our night nurse, Tish, comes in to check on him.
7:15- Tish comes in and gives Phoenix his night medication (Bactrim, Acyclovir, and Gabapentin). We also weigh Phoenix for the second time today. His weight is still up 1kg from when we admitted.
7:20- I get Phoenix dressed for bed, and do a quick “bath” in the bed. We are supposed to do a Chlorhexidine Gluconate (“CHG”) wipe down to help reduce the risk of infection in his central lines, but during this stay Phoenix developed an allergy to these wipes. Really hoping that regular soap and water will be enough to reduce his infection risk.
7:25- Phoenix wants to read a story, he loves all of our Halloween books and still wants to read them each day.
7:30- I lay Phoenix down for bed, his oxygen monitor starts going off again. Tish comes in and starts him on oxygen.
7:55- My sister, Ashley, calls on her way home from work. We talk for a few minutes before she has to go.
8:00- Call to check on Ben and Shiloh. They are both ready for bed- exhausted from a long day and a long two weeks of this hospital stay where they commute back and forth each day to see us, while taking care of everything at home too.
8:10- I get ready for bed, and get my side of the bed/couch that Phoenix and I share while we are here ready. Hoping to relax and watch some of the new Gilmore Girls that came out on Netflix today!
8:30- Tish comes in to start Phoenix’s Benadryl (to help with the itching that comes along with the IL-2 and Chimeric). I start watching Gilmore Girls.
8:45- Tish comes in to be there when the Benadryl is complete. Phoenix tries to stand up (in his sleep), and points at something in the air and says “What’s this?!” I help him lay back down.
8:50- The Benadryl is complete, so Tish flushes his line and then takes Phoenix’s vital signs again.
9:00- Phoenix’s machine starts beeping, there is an occlusion in his Chimeric line, Tish comes in to try to fix it. We reposition Phoenix and check all of the clamps, but the pump continues to beep. Tish turns the pump off and back on, hoping that does the trick.
9:02- The pump starts beeping again, another nurse comes in to check on the pump, and to try to get it working again. We continue to check all of his tubes, and eventually find one that got clamped shut, open it, and get the Chimeric going again. Since we started late, we should have 2 hours left, and then a 1 hour flush.
9:30- Tish comes in to take his vital signs (temp is 98.8), and listen to Phoenix since his breathing is still so loud and labored.
10:20- The Chimeric starts beeping, Tish comes in to start the flush! More vital signs, everything looks good. Diaper change.
11:00- Another diaper change, and fever is up to 103 so we give Tylenol.
11:20- Another diaper change. Tish comes in to tell me that his labs came back, and Phoenix’s Potassium is at a “critically low level.”
11:30- Tish comes in and starts his Potassium infusion, and hooks him up to extra monitors to watch him during this infusion.
11:55pm- Chimeric flush is complete!