I haven't updated in a few days because we've been super busy. Soon you will know how busy...
Monday morning the nurses told us we would be discharged, so we were thinking we would be home by 1pm. We were sadly mistaken. The discharge process, a long, tiresome ordeal, landed us at home around 8pm. One reason the discharge process took so long was that Xavian received a four hour blood transfusion to boost his red blood cells at 2pm. Once we arrived home, we were extremely tired and went to bed not too long afterwards.
Xavian was awake whimpering most of the night Monday. We think he was nauseated. We know he was congested. We also know that he was very uncomfortable, but we gave him all the medications we knew to give.
Tuesday, Xavian seemed happy and comfortable during the day, but fussy again at night. Before bedtime we noticed a couple ulcer-like sores in his mouth. We expected this since Methotrexate is known to cause these types of sores in the mouth and throat. Xavian whimpered most of the night, but again, we had given him all the medications we could. The chemo medications were just breaking him down as we expected them to. Unfortunately, we hadn't seen the effects of chemotherapy on our son, so we didn't fully know what to expect.
This morning, Xavian's mouth sores had gotten much worse and he wouldn't eat. He hadn't eaten since 8:30pm the night before. He was extremely uncomfortable and fussy. We grew very concerned. We called the oncology nurse and made an appointment at Clinic 8 at Children's Hospital. At the clinic, the nurse drew blood from Xavian. He was dehydrated and immediately received fluids. He had a low grade fever, which is borderline dangerous for a chemo patient. He also immediately received several antibiotics since his white blood cell count was so low, as we expected it to be. The doctor came in and told us that he was admitting Xavian to the hospital again.
Xavian has been on fluids and antibiotics for most of the day. He ate once today, but doesn't want to swallow, more than likely due to his mouth and throat sores. We keep suctioning his drool since he's not swallowing much if at all. At the moment, he's stable, but since he's so young, he is being observed very closely. He seems to be quite uncomfortable and we're just hoping he's not in very much pain. The doctors said that he can go back home when his blood cell counts go back to a safe level, when he is not running fever any more, and when he is eating well, so we may be here for another week.
As a parent, it's very hard to watch your three month old suffer, but we know he won't remember this and we know that the reason he is suffering is because the chemotherapy is saving his life. A good approach to what we're dealing with is to turn negatives into positives and stay in the moment. We're not promised tomorrow and even though we should prepare for tomorrow, we can't live in tomorrow. We have to live in today. An approach I try to take to life is...
Learn from the Past,
Live in the Present,
Be mindful of the Future
6 months ago