Tomorrow is Nick’s official post op visit at the RIAO. I don’t know if he’ll see Dr. Standard since it is not a regular clinic day but he’ll see Allison. It was about 3 weeks ago I think that we went on a random Wednesday because Nick started having pain in another area of his leg! He also had patchy, swollen, tender, redness so Allison prescribed and antibiotic. For the leg pain he got a big grey inflatable boot. Very fancy and did the job well.
The redness, swelling and pain on his skin was a bit scary because an infection of the skin could spread to the bone and the plate and if the plate had to be removed we had no idea what would happen. When I asked Allison she said “That’s when Dr. Standard works his magic”.
Ah yes the Dr. Standard magic. Sometimes I just have to take a deep breath and have faith. So far all has been well. The swelling was gone within 24 hours and so was most of the redness. His leg looks great, long and lovely really. He’s happy with homeschooling, making friends, living his life (albeit with a big boot on his leg and a hard splint on his arm) not much more I can ask for. If finally feels like we are actually moving on. I hate to even type it because you never know what the next x-ray will bring but Nick is walking without pain. That’s pretty great in and of itself!
Here’s a photo from this weekend. It was such a joy to be able to do something so simple as go to an amusement park. Watching him have fun was the best thing ever!
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!