I am thinking it’s because we’re using a different brand of antibacterial soap. Nicks been on antibiotics for what seems like a long time now. Once pin site infection seemed to start on the tail end of another. Those have improved although he has a wire that is a problem. At least it looks that way. It’s on the top and the top wires do tend to be the most problematic.
At the moment I think everything is fine and just off looking. Tomorrow I’ll be taking Nick to pick up the insert for his shoe. His foot had been bothering him to the point that he was still hopping and in the last few days he’s been walking more with it only hurting a little. If this insert does not take this pain away completely I don’t know what we can do. Pain when walking was one of the reasons this surgery came sooner than we’d planned. I haven’t even asked Dr. Standard what would be next.
Overall Nicks mood has been good and we’re in that familiar rhythm of fixator life. I’ve been trying to do leg wash during the afternoon when the baby naps since it’s easier and then if something is wrong I’m not calling the on call doc at 9pm. Speaking to Allison Dr. Standards PA is so much easier. She knows Nicholas and she knows what’s important to ask. On call docs probably have a protocol but it ends up being a much longer call then necessary sometimes. Sometimes I have no clue who they are! It’s funny when the person I am talking to does not know Nick at all. I always figure they’re new cause he’s a rock star at Sinai…. Hahahaha! Kidding. Sort of!
Family life is still a bit of a roller coaster with Steven being in Delaware more and more. We’ve got an offer in on a house but no word yet. We’ve already gone back and forth a bit so I am really hoping this is the end. We found an amazing area and I guess part of me wants to move on. I hate living in limbo and I much prefer to live with my husband full time. Four kids and one fixator and one parent is hard. I know there are single moms out there who do this all the time and my hats off to you and my heart goes out to you.
Hopefully the red pin sites look better in the morning. There was not any pain and not any drainage so redness alone is not a huge red flag. We’re just ready for this to be done. Nick is very ready. My boy is tough and patient but he needs a break!
Last night things got scary. Nicholas suddenly had a fever of 101.3 and it was clear the redness covered the whole front of his calf, was spreading to the back, with major swelling near his bottom three pins. In particular next to two of his old half pins with a lot of drainage. He wasn’t feeling good either. We gave him a dose of roxicet and by the time I talked to Dr.Standard his fever was down to 99.5. The fact that Nicholas’s leg really didn’t hurt and was kind of itchy was complicating things. Dr. Standard thought it could be a delayed dermatitis possibly from something they used in the surgery. We gave Nick a large dose of an antihistamine and watched for a while.
We didn’t notice a change in his leg and Nick said he felt a little nauseous but he said it was maybe just the hungry kind of nauseous so I gave him some mike and bread with butter. That helped his belly so we gave him his fourth antibiotic dose and put him to bed.
Before I went to sleep I checked his leg and it was not better but it was not worse. By five am when we gave him his next antibiotic dose his leg looked less swollen, a little less red and certainly not spreading! What a relief! Nick woke up about 7:50 which is pretty late for him and was willing to stay in bed with his DS and a little breakfast. Thank goodness his Aunt Tara was able to pick up Charlotte and take her to school. I hated the idea of making him come with me to drop her off and then I realized Steven went to Wilmington with Nick’s wheel chair and walker in the trunk of the car!
I had thought we’d be heading to the RIAO this morning. I can’t explain how it felt to be so excited about his long beautiful leg and then watch it swell and redden! Nicholas has worked so hard. He’s really had enough of this fixator so complications right now are beyond unwelcome. Now that the antibiotic seems to be working. Assuming it wasn’t the antihistamine which I guess we can’t know for sure till we talk to Dr.S or Allison… I never asked when we should give Nick more but if the swelling comes back again since I haven’t given it to him then I guess we’ll know.
Right now I am just so grateful my boy’s leg is looking better, he’s feeling ok and we’re home for the day. This fixator business is like a roller coaster ride sometimes but the light at the end of the tunnel is still shining bright. I still take a moment here and there to imagine Nicholas as a seriously handsome and tall young man with two seriously long legs! I imagine him looking down at me and smiling. He may be more than a foot taller than me!
Last night when Nick was feeling down I reminded him of what it’s all about, having his legs equal and strong and I told him that he is the strongest and bravest person I know! I reminded him that every day I look at him and think OH MY GOD that kids is awesome! His response was “And I won’t be shortened. I’m keeping my length”. Even in the hard moments Nick still has his eye on the prize and is willing to work for it! That’s my boy!