A Typical Atypical Night (T+11)

I arrive at the hospital about 7:30 p.m.  It is my first night back after a week of being home with a cold. I’m happy to see my boy. Derek is getting a different look now – a transplant look. His eyebrows and eyelashes are
gone completely, and puffiness replaces where his eyebrows used to be. He is also puffy around his eyes. His skin is dark. The effect makes his eyes look small and a little squinted. He is lying on the couch with his three favorite stuffed animals around him. At least he is out of bed. The transplant team has told me before that by day 10 transplant patients typically feel so awful that they don’t want to get out of bed. He seems to have a bit of energy.

Kristen is with me. She has brought her camera on which she recorded our cat doing some funny tricks. Derek giggles as he watches the three video clips. Then they watch a video about earthquakes and volcanoes.  Kristen leaves at 8:30.

I settle in for a typical night at the hospital. I begin the nightly routine of putting two different creams on Derek’s body from head to foot. One cream is for the bendable parts and crevices. The other is for the rest of him. He has been itching so badly that they have prescribed a new cream for the crevices. I start with the new one. I get interrupted when he needs to go to the bathroom. Then interrupted again when the nurse comes in with his nightly medications: three syringes, one pill, a mouth rinse of salt and soda which he dislikes, and a large chalky tablet he has to let dissolve in his mouth. He doesn’t like this one either. He also gets Benadryl and Tylenol; premeds for platelets which are coming in a little while. Maybe the Benadryl will help with the itching. He has a bronchoscopy in the morning, so they have to make sure his platelets are above 70. This morning his platelets were only 13. He got one bag early this morning  Then back to creams and scratching. His shoulder blades itch the most, and they are getting raw from all the scratching. He has very dark patches of skin around his waistband, on his back, and groin. It is much darker than a week ago. His ears are pealing, and he has very rough skin on his upper neck around to his cheeks. It is probably the combination result of radiation and graft versus host disease (GVHD).

By 9:45 the creams and meds are finished. The Benadryl hasn’t stopped the itching, but it has made him sleepy.  He falls into a restless sleep. I make my bed on the couch and sit and watch him flinch in his sleep at the itching.  At 10:30 the platelets are hung and Derek awakens when the nurse has to take vitals as she starts the platelet transfusion. The blood pressure cuff is on his lower leg because he just got his PICC line out of one arm this afternoon and has a replacement peripheral IV in the other. He scratches and grunts. Isn’t there anything he can take for his itching? No, says the nurse. Not until 1:30 because it has to be four hours after the Benadryl. How will he make it that long? He is miserable! We try ice packs on his back. It doesn’t help much but he gets back to a restless sleep. I lie down and try to sleep. It is 11:30. At 11:45, the monitor starts dinging. It shows that Derek’s oxygen saturation has fallen below 91%. At least that means he is now sleeping soundly. But 91% isn’t high enough. I turn on the oxygen blow-by and put the cup near his face. His level rises and the monitor stops dinging, for now. The nurse is on break and the replacement nurse takes his vitals which awakens him again. It is midnight, and I give him some water. He won’t be able to eat or drink after this until his bronchoscopy around 11 a.m.

At 12:15, the pump begins to beep. The platelet transfusion is finished and needs to be flushed. I get up, silence the beep, and call the nurse who has just returned from her break. She starts the flush which will take about 10 minutes. When the flush is finished, the pump beeps again. I call the nurse again. The nurse stops the pump, puts on another medication, and takes his vitals again, which wakes him up again. He starts itching and scratching. Poor thing! I wish I could take it away! The nurse comes in to change the medication in the pump. She says she will call the resident on call to see if she can give the Atarax early. At 12:45 she comes in with the Atarax. He takes it orally. Within 20 minutes, the scratching subsides and he falls asleep. So do I, sort of. The next three hours are a jumble of monitors dinging because he has desaturated, vitals being taken, and Derek’s need to urinate a couple of times. His platelets are only 58 so he needs a second transfusion in one night. That means waking him up to give him Tylenol again. Another hour and a half transfusion. I’m too tired and groggy to look at the clock.

At 4:45, Derek starts wiggling again. It looks like the Atarax is wearing off and he is starting to itch. At least it has been four hours, so he can get it again. I tell the nurse, and she gets the medication ready while I step out to the restroom.  When I return, Derek is awake and says he needs to sit on the toilet. I unhook him from the monitor and unplug his pump and help him to the bathroom.  He has a very watery stool and it takes a while for him to complete his “chores.” I stand beside him so he has something to lean on. He’s tired. It is after 5:00 when he feels he is finished, and I help him back to bed. The Atarax hasn’t kicked in yet, and he is wide awake and itching. Even after the itching subsides, he can’t go back to sleep. He begins playing with his blow-by oxygen cup. By pinching the two tubes delivering oxygen to the cup, he can create a rhythm with the sound of the oxygen flow. The nurse asks him if he is playing a song. He giggles and continues. A few minutes later he asks me what song he just played. I have no idea. I was trying to sleep. It’s “Moonlight Sonata” he says and giggles. Fitting. It is still dark outside. I wonder if the moon is up. He wants the keyboard from the playroom. I tell him he needs to sleep. The playroom doesn’t open until 9:00 a.m. and that is three and a half hours from now. I sing to him and rub his back as though it is just now bedtime, hoping to relax him. It’s 5:35. At least he isn’t itching now. We both try to sleep. He succeeds. I don’t.

It is 6:50 and light outside. The pump beeps because another medication is finished. The monitor dings because Derek just desaturated again. It is cloudy this morning, so it is darker than usual at this time. Derek is sleeping. I am writing this blog post because I can’t. I hear the nurses coming in for shift change. It’s been a typical night of interrupted or non-existent sleep but an atypical one because Derek has never had two bags of platelets in one night, and I’ve never heard “Moonlight Sonata” played on an oxygen cup. I hope the phone doesn’t ring at 7:30. I hope we can each get a nap today.