We were planning to be at clinic M/W/F this week, but that didn't work out. Despite that, this week hasn't been any shorter than last week. It was Thursday we learned Eric had the flu. He was so, so sick on Thursday and Friday with fever and head pain. He just lay in his bed sleeping on and off.
Saturday morning his head still hurt, but no fever. By the end of the day, he seemed much improved over the previous days. Though his nose was bleeding ALL DAY. He had a couple of doses of TXA and it would stop briefly, but just start again. We knew he didn't have any platelets because Wednesday evening in the ER they were only 25 and the fever seems to make his body burn through them quickly. We had talked about going into the ER to get a platelet transfusion. Eventually on Saturday evening Eric decided it was time to go. His nose had stopped bleeding at that time, but we didn't think he would be able to wait until his appointment Monday. I called the Oncologist on call and she gave the ER a heads up that we would be coming in. When we arrived at the ER, Eric vomited a substantial amount of blood. Luckily, it was not because he had an internal bleed; it was from his nose bleeding all day. It was DISGUSTING. His nose had not started bleeding again, so I don't think they were in a huge rush to get to Eric, but we didn't wait too long to see a doctor. We had never been to the ER for platelets, so weren't even sure if they did platelet transfusions there. The ER doctor said that they can do platelet transfusions, but it had to be 1:1 nursing and they were too busy that evening to be able to do that so we would be admitted. Ugh! Just before 1am, we finally made it to a room upstairs on T8 and the platelet transfusion started before 2 am. We both fell asleep shortly after the platelets started. Eric's nurse came in at 8am for vitals and we both woke up but were able to go back to sleep for another hour. Shortly after 9am the doctor came in with discharge papers and we were able to go home.
Sunday we were both exhausted, but Eric was again feeling a little better. He was finally actually hungry after not eating for a few days, and able to come to the table for dinner and had some lights on in his bedroom for the first time in days. We were able to skip the clinic appointment on Monday since it was for platelets and he'd got those over the weekend. Lucky we didn't have to go in that day because Eric slept in until 9am which is shocking for him. He still had a headache and his nose started bleeding again and he was so upset. He said he just wanted to feel better. His nose did stop bleeding fairly quickly and he did leave his room and hang out on the couch for awhile, but then he started to feel poorly again and didn't make it to the table for dinner. Tuesday morning he had his last dose of Tamiflu, but vomited again that evening.
Wednesday we went to clinic for the bone marrow biopsy and LP (lumbar puncture.) We have to go in early for procedures so we left the house at 7:30am. Eric's nurse was new to T8 and she missed his port. Luckily a favourite nurse came in during the access and she was able to fix it quickly and hopefully not too painfully, but Eric was not impressed, obviously. He needed platelets before the procedure, but they took awhile to arrive upstairs. Eric was happy to learn there were only 3 people on the procedure list, since he had to go last because of the flu. Unfortunately, they started late and Eric didn't get in until 11:30. He was so upset for about the last hour and I was worried about how he'd wake up. Often if kids are sedated angry, they wake up angry. It was a problem for the first few years of Eric's treatment, so we try hard to be positive as he's going to sleep. We weren't able to do that this time, but luckily he still woke up fairly well. His hemoglobin was low so he had to get blood as well. We were there forever, and Eric was pretty grumpy, feeling miserable for most of it.
Thursday Eric spent the entire day in his room in the dark. His head and jaw have been hurting a lot, and he's a little nauseous, but no more vomit. Friday he spent most of the day in his room in the dark, but I did manage to convince him to come out of his room for pizza and family movie after dark. Saturday morning he has again woken up with a big headache, but with some pain meds, he has made it to the couch early today. Even with the sun up, though it's pouring rain, so not all that bright.
The original plan was to get platelets Monday and Friday and have the biopsy and LP Wednesday. However, since Eric ended up having platelets on the weekend and then on Wednesday, we didn't need the Friday appointment anymore. He has also had his port accessed 4 times in a week, so the area is feeling very tender and needs a rest. Though I count on our routine of Monday/Friday one week and Wednesday the following week to schedule appointments, Eric's online teacher and flights to PG at spring break, so we can't just swap to the opposite schedule. To get back on track, we will go to clinic Monday and Thursday next week and then Tuesday and Friday the following week.
