We have a surgery date! November 13th, which just so happens to be my older brothers birthday! Praying that it means this is a lucky date!
A few days after Rowan's latest fever, he started complaining of the back of his knees hurting. I thought that maybe it had something to do with the nodes behind his knees, and that maybe there was some left over swelling behind them. He was limping a little, but he still seemed like he was in good spirits. While playing outside, his right knee just gave out on him, and he collapsed! Of course we became worried even more so, but with everything he deals with, I thought maybe he was turning a weird way, and tripped. However, a few hours later, he was just standing and his knee did the same thing, and he fell to the ground. There were some tears (from both of us), but super dad came to the rescue and made everyone feel better. (I do have the most wonderful husband.) I called the Dr., and of course it was after hours. They said it could be related to PFAPA, or it could be something totally different. They wanted us to bring him in on Monday (this was Saturday afternoon). For the next two days he woke up screaming from his naps, complaining of pain in his knees, then it moved to his ankles and then to his hips. Monday we had the apt with the Pediatric ENT, which lasted until nap time, so we were not able to take him to the Dr. Tuesday he woke up and didn't seem to be in any pain. When I asked him, he said he didn't hurt, and was ready to go to school. He kind of went back and forth through the week, and I made an apt for Friday afternoon. Some how I forgot about the apt, and missed it!!!! I used to NEVER forget about important things like that. I think maybe I gave some of my brain to each of the kids during pregnancy, which didn't leave much for me! ;)
I did end up taking him this past Monday, and the Dr. said everything looked fine. I have no idea if it was related to PFAPA, or if it may have been something called Toxic Synovitis. Either way, it seems to be gone now, and he is back to bouncing off the walls! If anyone else has experienced this with PFAPA, please let me know. At least I can be prepared for it if we have another episode. HOPEFULLY, we won't have another one though!!!
According to medical studies, and our PIDS, the studies range from 66% to 100% cure rate, after having the tonsillectomy and adenoidectomy. Those are pretty good odds! Of course, before we set a surgery date, we met with the ENT, discussed at length with her PFAPA, and did A LOT of research. We contacted all of our Dr.'s and asked if they would look up studies regarding the surgery and PFAPA (because they have access to a lot more than we do), so that we were armed with all the knowledge that we could be before making the decision. We also researched other possible syndromes on our own, to see if he could possibly fit into anything else. We wanted to make sure that we were not deciding to take out something that he would need, if he actually had a different syndrome. After discussing it with each other, our Dr.'s and our families, we decided to go ahead and schedule it.
The only real concern about them doing it on someone Rowan's age is dehydration. So I am armed and ready to push the fluids (already). I have dreams about making him drink. I'm sure I will until it is over. They are going to try and make it an outpatient thing, so he can rest at home. He will be on a soft diet for two weeks, with no vigorous activity (yeah, right). From what I hear, they are up and moving that afternoon- like nothing happened! =)
Lots of prayers please! I know many families have been through this surgery. I am just praying that it takes the PFAPA away. I will continue to update anyone who wants to read, even if/when the fevers go away!
Happy Halloween!!!!
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