I always get warned to knock on wood when I express my eagerness for things. Yesterday, when I told the nurse I was happy we would be discharged since Scarlett was feeling so good, she said, "I hope so...knock on wood," as she tapped the door on her way out. I should have listened...
We were doing great. The little miss was eating and smiling, cooing and resting. Chris said goodnight to go home and rest before work today. Scarlett and I settled in for another night. I made a bottle, got comfortable with her and she was doing well...until she wasn't. I found myself suddenly sitting with her in a puddle of the formula that she had tried to eat but could not keep down. Our wonderful nurse came to help me clean her up and get some medication in her while I changed clothes and the sheets on my bed. Scarlett fell asleep, but I wanted to wait until her last dose of chemo was complete and be sure she was okay, so I didn't go to bed until after midnight.
Then at 2am, I heard the nurse come in to change Scarlett's diaper. I am always so grateful for their help with this each night, since she is on such high fluids that she needs to be changed every few hours before the diaper gives out. However, she is pretty picky about her pacifier to fall asleep, so I usually need to help get her back to sleep. This time, I felt that her blanket was wet. When I lifted it off of her, I saw that the bed around her was soaked with blood.
Don't panic. I did, but quickly realized that the IV had somehow come unscrewed and was leaking fluid from the pump and blood from her port onto the bed. I have no idea how this happens, but it is not the first time. The nurses came in to help clean everything up and reset her IV because it was a contamination risk. This meant her port needed to be de-accessed (the needle removed) and then reaccessed (the needle put back in). We put the numbing cream on, let it sit for 30 minutes, got her hooked up again and then finally settled back in for sleep around 3:30.
I awoke at 7:30 to her suddenly screaming and gagging. I turned her on her side so she would not aspirate, then called the nurse for medication to calm her down, and she drifted back to sleep. Unfortunately, I was awake and not going to sleep again any time soon. Rounds were starting and we began to get visitors.
Our neuro-oncology nurse practitioner came by early, and I could tell by the look on her face that it was time: NG tube day. She said that she completely understood why we wanted to hold off, but now Scarlett's risk of dehydration was high, so she was not comfortable letting us go home without it (she was quite sure we would end up in the ER before we saw her again in the clinic Monday). This is what we were waiting for - for someone to tell us she needed it NOW, not "she might need it soon."
The tube went in this morning. It only takes a minute for the nurses to snake it down her nose into her stomach. It has made her a little uncomfortable as she adjusts to what was described to me as "a thick piece of spaghetti down her throat." However, she seems to be handling feeds well and, if it keeps us out of the ER on the weekend, I can deal with it. I have learned how to check for placement by using a stethoscope to listen as I pump a bubble of air into her stomach; I have administered some formula and medications via the tube while she sleeps. Tomorrow, I will learn how to use the pump that can run feeds overnight (we aren't sure we will need it, but I need to learn). Soon, I will once again mom up to learn how to place the tube myself.
Now, I will casually say we will leave tomorrow, but I have learned far too much to say for sure.