Monday Daphne was discharged from the hospital. The plan was to go to 5F3 every evening just before 8pm to get bloodwork done and to give her IV prednisone. 5F3 is the Stollery ambulatory clinic. Prednisone is a steroid used to treat rejection.
Tuesday went great. Daphne was happy to be home and in the evening I took her to 5F3 for her prednisone. We were back home in no time.
Wednesday started great. Daphne even crawled forward for the first time and she ate more dinner than Rowan! That evening we decided to go to 5F3 as a family. Walking down the halls of the hospital Daphne was giggling at her silly sister's antics. Once we got to 5F3 Daphne threw up a tiny bit in her stroller. That was strange because she hadn't done that in a while. I picked her up and held her in my lap for the bloodwork and as the nurse started getting ready to draw it I felt Daphne wet her diaper. Even my pants felt wet but I just thought it was a regular accident. Then we immediately noticed that Daphne had gone completely pale. Her lips were white! Dr. Chatur (one of Daphne's pediatricians) happened to be there and she immediately went to the computer to check Daphne's latest hemoglobin. As she walked out of the room I checked Daphne's diaper and saw that it was full of blood. The nurse immediately called Dr. Chatur back into the room. We put Daphne in a bed and Dr. Chatur got to work. It is such a miracle both that we were at the hospital and that Dr. Chatur happened to be there.
Brad had left the room with Rowan so she wouldn't be too scared. Dr. Chatur called a code blue on Daphne even though she hadn't stopped breathing, she just knew that 5F3 isn't equipped for those kind of emergencies. Very soon I was surrounded by a bunch of familiar faces. The transport team nurses and doctors from the PICU were there and also some nurses from 4D. I don't really remember what all they were doing there, but they were very busy. Soon we were back in the PICU. Daphne's hemoglobin was in the 40s so she was given some blood. Daphne started to improve quickly. She was even smiling and laughing soon. They did give her more blood later on and also some platelets.
Dr. Yap soon showed up and they did an endoscopy to see where the bleeding was coming from. Unfortunately they couldn't find anything looking from either way. Also, now she was intubated again. It was definitely hard to see her on the ventilator again and a bit heart breaking to be back in the PICU. It still felt so familiar, like we hadn't been away that long.
Thursday they continued to monitor her hemoglobin to see if she was still bleeding. She had some dark brown poops indicating old blood but no more bright red ones. She was kept on the ventilator for a while not because they were worried about her ability to breathe, but because they might do an angiogram which would require her to be intubated. Since she was not actively bleeding the angiogram wouldn't see anything so it was canceled and Daphne was soon taken off of the ventilator.
Daphne spent another night in the PICU and by the next morning she didn't look like a PICU patient anymore. She was smiling and laughing, standing in her crib hanging on to the rails. We were soon moved to 4D and her feeds have been restarted.