Day ten things started getting uncomfortable for Oscar. He has multiple areas on his body that are red and burning. He has had diarrhoea most of the week and his sleeping is erratic. A small doze in the evening then awake on and off from then on until four-five in the morning, finally sleeping for a few hours from then until eight ish. He is terribly frustrated and upset during the night with many outbursts and screams of frustration and discomfort. The sheets are covered in blood and shedding skin to the point of them needing to be brushed off a few times through the night. Oscar suggested we change them in the nights but I just don't have the energy to do this! Once daily is more than enough.
The nights have been saved with You Tube! About 3a.m Oscar is just exhausted but obviously can't sleep so watching something on the I.Pad distracts him for awhile. At night I want to reach for the steroid creams then as day breaks I'm proud I didn't cave into temptation. Oscar has only made it to school for a day and a half this week but on Friday he was finally in good spirits and quite happy.
Yesterday Oscar was very brave having his blood tests and didn't even get upset! If the test results are fine then the dose of methotrexate will increase next week by 2.5 m.gs.
It was a very long night for Oscar and Andrew lastnight as Oscar didn't fall asleep until 5a.m. He didn't get out of bed until 2p.m today, only because Andrew took him for a drive to get him out of the house. He asked Oscar if he wanted to go to Mitre 10 but the itchy wee fella just wanted to come home! He got out of the car and started to cry. I just can't imagine how he is feeling. So yet again we sit on the couch and I 'pat' Oscar while he watches a movie. Fingers crossed we start to see some positive changes over the next few weeks with his skin. It's heartbreaking watching him so miserable, uncomfortable and exhausted.
Tonight I showered Oscar and it felt like I was torturing him! He screamed and cried and said it stings and burns. I don't doubt this for a second! I finally got him all snuggled in bed and he started to cry telling me he couldn't go to school tomorrow as he hasn't done anything this weekend so he won't have anything to talk about at sharing time. I didn't know what to say to him! We discussed some things he could talk about and I thought all was good then he got upset again saying he was scared he would have to go running at school as it will hurt him. This from a little boy who loves school, loves running around and is very much an active 'outdoors' boy. Obviously he is very uncomfortable and
anxious at the moment. We are very thankful Oscar's school and teacher are very supportive with everything that is happening.
Getting Oscar out the door in the mornings for school is nearly impossible but I suspect it is a great
distraction for him and although he is exhausted I believe it's good for his well being to have a sense of normality, routine and for him to play with his friends...
Wish us luck getting out the door tomorrow morning, we will need it!
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