I had a conversation sitting in the RMH dining room with a family therapist that volunteers his time to consult with the House and work with families. I asked a bit about how to best provide Julia with what she needs through this. Basically he said to provide as much love and patience as we can. Love I can manage. Patience is awfully tough.
Today was all about Julia in a lot of ways. Susan came to do the switch in the morning and as has become the routine, I took Julia and Lauren to the playroom at the outpatient side to hang out. The Child Life people and volunteers are great, there is a lot to do in the playroom, and Julia usually really enjoys the crafts and activities (today she decorated some kind of mirror thingy and made pizza). Usually I let them play awhile and then around lunch we head back to the Ronald for a bit to take care of things I may need to do there and to just get out of the hospital. Today Julia was playing with one of her friends that she made at the Ronald, a lovely little six year old whose brother was in for the day getting blood transfusions. They had a good time and Lauren was having fun too so I just hung out all day without leaving the hospital and switched with Susan in the afternoon. It wasn't too bad and I hope it was good for Julia. She seemed to be having fun.
I'm annoyed with some things about the hospital stay, which is inevitable. We have been here since last Tuesday and we are still having different nurses and nurse assistants. I'm sick of explaining everything to them about the details of Nathan's current routine. This includes how we like to give him his medicine, what pre-meds he needs for transfusions, and that his damn blood pressure is all over the map. Today's staff seems so surprised that his blood pressure is high. They are like, "Wow!". And I keep saying, "I know it is high, but if you look over his chart you will see that there is no reason to be surprised by it. Especially since he had a transfusion today". I'm done explaining Nathan's care to the staff. If they just bring me the meds and teach me how to operate the pump and then left us alone all day I would be happy. And, for the record, we have some really great nurses and assistants (especially one assistant that works nights named Ron who really makes us feel looked after). I'm just tired of having different ones. The concept of assigning a primary nurse is really a great idea. I just wish that it was followed through a little better in the places I've been that claim to do it.
Currently it seems like they have Nathan's scan schedule all screwed up. It was squared away, but we had to cancel all of his outpatient scans and then they had to reschedule them all since he is inpatient. Same scans. Same facility. The only difference is apparently the "outpatient" versus "inpatient" designation and the need for patient escort services for the inpatient scans. There are probably different billing codes or something for insurance. Horrible inefficiency and as of right now it seems like they have him scheduled for his nuclear medicine scan prior to receiving his radioactive isotope injection. Hospitals need to fix this type of thing. It is bad business process.
Nathan, after several nights of going to bed early, wouldn't go to sleep tonight. As I've been writing this entry he has been telling me about how Darth Vader really is Luke's father (he just watched Revenge of the Sith) and explaining to me the many variations of diarrhea. You know how they say Eskimos have so many words for snow? Well, Nathan has apparently worked out verbose descriptions for about as many forms of diarrhea. Now he just needs to make up words for them. He also just informed me that he figured out "what makes 16". The answer is 4 + 4 + 4+ 4. I asked him if he had done that math with his teacher today and he said no, that he had just done it in his mind.
I think I'm doing okay today. I'm in soldier on and focus first on the needs of the kids mode. My patience is okay. I wouldn't say I was in good spirits or bad spirits. I would say I was just feeling a bit numb and resigned. Oh yeah, and very, very tired.