Monday, Day 5:
Our sleep Sunday night was only marginally better. Eric's achy legs made it difficult for him to fall asleep and then his tooth fell out and then his nose started bleeding. It was midnight before he got to sleep. He has had 4 super loose teeth for quite awhile and that was the 4th one gone, thank heaven. They're a worry because of the low platelets, so they bleed, and they're also an infection risk when you are immune compromised. Eric also woke up at 3am complaining about his legs, but it didn't take him too long to get back to sleep then. He was up by 8:30. He said he tried to sleep more, but he couldn't. I told him 8 hours wasn't enough for a 10 year old. It certainly wasn't enough for me!
He wasn't feeling great Monday. it is probably the lack of sleep as much as anything else. He did not have a migraine or any other pain, just feeling a bit off. He spent the morning lying in his bed watching tv in the dark. Later in the day I was able to turn on a little light and he sat up in bed to build Lego. He built the motorcycle that he received awhile ago from the Baker Drive Elementary community and I had saved to entertain him in hospital.
Eric's Oncologist came in to see us first thing and I was so happy to see him. He says the medication should be completely out of Eric's system and since he still had a migraine Sunday, he doesn't believe it is a side effect from the medication. He says we will restart the treatment at half the dose. He reiterated that this is an important time while we wait to see if the medicine will work or if the blasts will take over. The blast count in Eric's peripheral blood is higher Monday, which makes me uncomfortable, but his doctor says it is still at a safe level and we will just keep an eye on it. He still wants an MRI done but is also having the team look into medications to prevent the migraines, instead of just treating them after they appear.
Tuesday, Day 6:
Another bad night last night. Eric got tucked in early and was so tired that we were optimistic, but he just wasn't able to sleep. After awhile, he ended up so frustrated and upset, that he ended up vomiting. Then he blew his nose and it started bleeding, a lot. He ended up getting a platelet transfusion at midnight. Since he's allergic to platelets, he usually has Cetirizine (Reactine) first, but this time I asked for Benadryl instead to help him sleep. He fell asleep during the transfusion and slept through until 8:30am.
After 3 rough nights in a row, he is super tired today, just laying in bed watching tv. We were able to get off precautions today since it's been 10 days since the onset of the flu symptoms. I went straight to the washing machine!
He had an MRI scheduled for 3:30 today. He hasn't had one in a couple years and was able to be sedated for those ones. Now that he is older, they want him to do it non-sedated. He was a little nervous about staying still for long enough and the "coils" that go over his face, but he does get to watch a movie. They had also initially told him that they couldn't use his port for the contrast dye and he would have to get an IV, which he hates. However, we since learned that they can use his port and he won't have to get an IV. We are giving him some migraine medicine in advance, just to make sure that he doesn't get a migraine once we start moving around. He is such a brave kid who has to do way too many hard things. He did amazing, of course!
Eric's regular inpatient pediatrician is the doctor he has been seeing this week, except when his Onc stopped by yesterday, and she wanted him to get out of the hospital on a pass today to see how he did moving around. Due to the MRI, we couldn't get out until later in the day so I took him to the Lego store to get a reward for doing such a hard thing today, and he got an Orange Julius too.
No headaches for 2 whole days 🤞🤞🤞
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