Esther started the day with only two appointments - radiation (3-in-1) and the initial eye checkup - scheduled to be done around 11:30. Our plan was to have lunch at the hospital before heading back to the Ronald McDonald House, getting back around 1:00 for nice, normal, afternoon naps.
Instead, we returned back to the house around 3:30, after going on two wild goose chases. One - we lost our wagon's canopy on Monday afternoon at our last appointment,. Two - Esther's skin had a rash that needed to be taken care of before leaving for the day.
After lunch, and up to which point everything was going according to plan, we headed back to the main entrance to use the bathroom and wait for the next shuttle back to the Ronald McDonald House. While we were using the restroom, Esther reminded me that we didn't ask about the lost wagon canopy yet. So we went back to Clinic C to see if they had found it. The receptionist didn't know, so she sent us to the security desk, where they usually keep lost and found items. The security desk, by the main entrance, was not the main security desk, so we went all the way back towards Clinic C to the main desk. They did know about the wagon canopy, although it was not locked up where the guard had put it yesterday. They called Patient Services and found out it was downstairs another level, and thankfully, the lady went down there to retrieve it for us. After we signed for receiving our missing item, we started heading back to the main entrance, with the plan to call the radiology clinic about the rash on Esther's skin on the way.
I called the nurse Esther had this morning, since she had noticed a little bit of a rash this morning, and asked her where we should go or what we should do to get it looked at. She said we could go to any clinic and ask to see a nurse without an appointment. I asked her if one of the charge nurses in radiology, who had accessed Esther's port this week (I can explain that in more depth at another time if you'd like), could look at it, because she was already aware of the rash that had developed over the weekend (and subsided). She said yes, we could come back to the radiology clinic, so we continued on our way. When we arrived there, the receptionist said almost everyone was currently in a meeting, and she would call a few people and see what we should do. The nurse informed her over the phone that we needed to go to Esther's main clinic - Clinic E - and they would take care of it there.
When we arrived at Clinic E, the neuro-oncology clinic, the receptionist was not present, which is okay, because we can always check in at Clinic D around the hallways instead. When I explained why we were there without an appointment, the Clinic D receptionist called the nurses and asked if Esther could be seen. The nurse informed the receptionist that we needed to go to the Line Care Clinic (by the main entrance), and they were putting in the referral for us as we headed that way (again!). When we arrived to the unmarked door there were signs telling us that we needed to wait outside for someone to either call or page us. We needed to use the restroom again (mind you, it has been over an hour since we finished lunch by now), and thought that would work out nicely while we waited to be called in.
While we're waiting out in the lobby/hallway area, I realized Josiah hadn't even gotten his after-lunch-nursing session, so I took him out of the wagon to let him nurse while we finished waiting. He nursed and napped for about thirty minutes, which he desperately needed, by which time I was becoming agitated wondering why Esther hadn't been seen yet. When Josiah was done, and before I even took off the nursing shawl, I popped up and went to let myself in to inquire about Esther's referral.
The two nurses at the Line Care clinic had never gotten the referral, and didn't even know we needed to be seen. (mind-blowing!) They asked for Esther's medical record number, so they could call Esther's main clinic and add the referral themselves, while we went back to the hallway to pack up the wagon quickly and head back inside. It was now 2:45pm.
The nurses worked together, thankfully, to help Esther as quickly as possible and let us finally wrap up this wacky Wednesday. They took the dressing off her port, cleaned the area around her port (being careful to leave the IV in so as to avoid a second poke), cleaned the iodine-type liquid off, redressed the IV with more gentle adhesives, added loads of nystatin/triamcinolone cream to the entire rash area, put some gauze on the cream loosely to help it stay on the skin, and then gave us some more gauze, cream, blue tape (gentle medical tape), and cleansing pads. We will have to see about getting more cream as a prescription from Esther's regular Clinic E doctor tomorrow, as they recommended putting cream on twice a day until the port is de-accessed, and then three times a day with good baths on the weekend. Hopefully, that will help her skin calm down and return to a normal state for accessing the port again next week. We left the Nurse Line clinic at 3:20, and actually made it on the 3:20 shuttle, which was still in the circle loading up other families. Praise the Lord we made it back to the RMH around 3:30, and could finally call it a day. Whew!
