As I write this, we're in the midst of Thomas' first bleed. He had his usual infusion on Tuesday morning (today is Thursday). I poked him twice on the right arm and once on the left and couldn't get it. One of the clinic nurses then poked his left arm and got it. So, it was four pokes total but none of them were any more traumatic than any other times we've poked him. We went home after that and he was normal all day. He crawled around and was maybe slightly fussier than usual but nothing that made me think there was anything wrong. That night though he woke up crying several times. Steve got up with him in the morning and noticed that his left arm was really swollen. He held it limp by his side and cried when he moved it. We called the hematologist and he had us come in to the clinic.
They assessed his arm in the clinic and decided that it was probably a muscle bleed as a result of the infusion the day before. He's been getting 250 units of Kogenate FS for prophylaxis and to treat the bleed they gave him 500 units. With his left arm out of comission, he doesn't have a lot of options left for venous access. He has two good veins in his right arm but I'm terrified that something similar will happen to that arm. If someone is going to cause damage to that side, it isn't going to be me so I had the clinic nurse do this infusion. She missed the one she tried in his arm and ended up going to his ankle. She got that one easily but it's more traumatic for him and it's more difficult to restrain his leg than his arm.
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| Thomas' arm on Wednesday night |
So that was yesterday morning. We came home and he acted quite normal. He ended up playing and crawling like nothing had ever happened. The bruising increased but I thought the swelling went down some. He slept fairly well last night but this morning the arm looked worse than ever. The swelling was significantly increased. We went back to the clinic and they were quite concerned about the increased swelling. Our hematologist thought that it had spread too much to be a muscle bleed and it was more likely a soft tissue bleed. She was also concerned about
compartment syndrome considering the huge amount of swelling. She decided that we would treat with another 500 units of factor and he'll likely need more tomorrow as well.
While they were waiting for the factor to come from Blood Bank, Thomas and I went to the playroom. I felt like his arm was changing quickly at the point. The bruising got darker and the swelling increased all within about half an hour. The nurse agreed and decided to keep us around after the factor infusion to see if it continued to change.
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Sleeping while waiting to be re-assessed
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We spent most of the day there but it never really changed much. They did have the othopedic surgeon come see it and he felt that we could continue to watch it closely and he would see it again tomorrow. If it changes through the night tonight we're supposed to go back for more factor. We're watching for increased pain or swelling and decreased ability to use his hand. If it stays the same, we'll go back in the morning. He's definitely favouring it but he is using it still. He's gone to bed now and unfortunately the only picture we took of it this evening was with a cell phone but I'm going to post it anyway.
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| Thomas' arm on Thursday night |
So wish us luck for tomorrow. And please send us positive vibes that this doesn't turn into compartment syndrome!!
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