No more sugar coating; this Christmas break has sucked pretty bad.
Eric was supposed to have an appointment at clinic today; however, we ended up coming in yesterday on New Year's Day. Eric was discharged from hospital on the 30th after more investigation of the migraines found nothing concerning and after having no head pain for the day. Unfortunately, the following day, NYE he had a migraine again and ended up spending the entire day in his bed in the dark. He also had a super bad bleeding nose and his temp was elevated, though not what is considered a "true" fever by Oncology. I thought we were going to have to go into hospital multiple times during the day and, after only getting home at 7pm the night before, I was pretty stressed. Of course, then Eric was worried about me worrying 🤦
When the migraine happened again the following morning, on New Year's Day, I asked Eric what he thought about coming into hospital. For me, this is just way too much, definitely not normal. He agreed that we needed to come in. I didn't want to wait another day to his appointment on Friday, thinking that I'd end up driving with him screaming and that we'd end up sitting for the weekend. I figured by going on Thursday, they'd be able to do some investigation on Friday, and since I'd already given him pain meds, I could time the drive to be as painless as possible.
Since it was a holiday, we have to go into the ER, but we called the Oncologist On Call first and they let the ER know to expect us so we don't have to wait in line. In the ER, they first ordered chest and abdomen x-rays, then they did his port access and bloodwork, a bolus of fluids, and finally, a cheek swab since they haven't been able to do a nasal swab due to bleeding nose. We saw an ER doctor and then Eric's pediatrician from T8 came downstairs as well. She is the same one who did the LP on Tuesday. She mentioned that while his opening pressure was a little high, it was still within normal range, so doesn't believe that is the cause of the migraines.
Here's Eric chilling in the ER:
Eric was admitted to a room upstairs where we learned that his hemoglobin was 73, which was shocking since he had a blood transfusion just on Monday, and that he has Influenza A, the flu. This was also shocking. We all caught Joel's "cold" and it was a bit rough for Joel but it seems pretty mild for the rest of it and it turns out it's the flu! Eric was given another blood transfusion and has started a course of Tamiflu. He's also still taking TXA 3x per day for the nose bleeds. He is very annoyed with the increased number of medications everyday. He is also constipated, (because you know, why not pile on) and was given something for that.
The doctor's here have agreed that we need to stop Eric's new treatment. They are afraid this may be a fairly significant side effect from that treatment. As they keep telling me, we've been admitted 3x in 2 weeks for this same issue. They tell me it's just a pause, and maybe we can restart it later at a lower dose, but I am absolutely gutted.
This morning, Friday, Eric was feeling fairly well to start the day. The doctor's have asked for an ECG and to see Ophthalmology and Neurology today, plus a platelet transfusion. A porter came to get us to take us to Ophthalmology for 10:30am. They were not ready for us when we arrived and Eric's head started hurting while we were waiting. I tried to let them know we needed to get the pictures (optic nerve) now or we were going to have to leave, but they said the tech was busy, so I asked for a Porter to come and get us. Meanwhile, Eric is screaming from the pain. We waited and waited for the Porter with Eric screaming the whole time. I can't get back to our floor through the building because it's a very weird route with lots of elevators and some spots requiring staff access cards. However, I was about ready to walk him out the front door and back in the front door of the main building because that route is easy, when the Fellow said she would take us back. I had also called upstairs while we were waiting for the Porter to ask for Eric's pain meds to be ready. It was a pretty awful half hour but we got Eric tucked into bed with some meds. After about 1.5 hours of chilling in bed he seemed to be doing pretty well so I asked him to get up to take his inhaler and let the Care Aide change his bedding. With that minimal movement and pain meds on board, his head still started hurting almost immediately. Back to bed with more, different pain meds, since it had only been 1.5 hours since the last ones. The doctor also ordered a medication specifically for headaches. Unfortunately, that one is given along with Benadryl so Eric was pretty sleepy. Then Eric's nurse tells us we've got to go back to Ophthalmology, ugh! Eric was feeling great then, if a little sleepy, so we said we would give it a go. We were down there for 1.5 hours which was a lot of waiting, but Eric handled it very well this time. Once back upstairs, a Resident from Neuro came for a consult. She asked a bunch of questions and did an exam and said she would discuss with her supervising physician. ECG had come earlier in the day while Eric was suffering from a migraine, so they were asked to come back later. They never made it back so our nurse did the ECG. Busy day, loads of tests, but no results until tomorrow. What I do know, is that nothing is jumping out on any of the tests.
The evening has been good so far🤞Eric is chilling in his bed playing video games. We are on contact precautions (isolation) because of the flu, so before Eric's nurse left for the night, I got him to bring some cups of water, heat up some dinner for me, and bring me some towels so I can have a shower. I hate, hate, hate relying on someone else for every little thing! I'm planning for a quiet, and early, night.
