Connor was due for his monthly infusions today at TCH and as always we have to leave the house by 5:30 am to make it there for our 8 am sign-in. The boys are always very tired of course so mostly get dressed and crawl in the car and watch a movie for the drive. The only thing that seemed off with Connor was the fact that he was not hungry at all. By the time we got to TCH he was complaining his legs were hurting, he had a headache and his neck and throat were sore. When the nurse checked us in she noted that he had a temperature of 101.3' F. The mention of strep came up so we were moved into a special room for Isolation, where we stayed for the day. Our nurse Amy was a trooper putting on a gown and face mask for each of her 15 trips of so in and out of the room. What an Angel she is and since she will be moving soon we know we will miss her a lot.
So due to the thread of possible Strep and his blood work showing some activity Dr. Soep decided it would not be wise to give Connor his Solumedrol infusion since we do not want to weaken his immune system anymore plus it would mask any symptoms of what is going on in his body right now. He got a small dose of steroids to help with the IVIG and then we did finish up with the Methrotrexate. Right before the infusions were done Dr. Soep came in to check on Connor and also do a swap on his throat to see if it was Strep. Well, here is when things got interesting. Connor put up a huge fight about not wanting this swap. Here is a boy who went under the knife about 5 times in his 6 years of living, has been poked and propped over and over without hardly a complain but this was the breaking point I guess.... He did finally go through with it and when it was done he said that it was not a big deal at all ... figures :)
Well, we did get a fitting in for Connor's Carbon Fiber Braces when we finished the Infusion and then the three of us headed home. I can say we were all beat and tired and the 2 1/2 hour drive seemed to last forever. Unfortunately we had just gotten home when I got a call from Dr. Soep that the test for Strep came back positive. So we need to head back into town tomorrow morning to get Connor's Antibiotics. Since Strep is highly contagious there is of course the possibility that Alexander and I come down with it as well. Ron was home yesterday afternoon and left at the same time we did this morning so his exposure was shorter but he will be back again tomorrow afternoon as well for a couple of days.
You know we always think JDM is the real battle and of course it is but it is the weak immune system Connor has 'Thanks to JDM' that has us stumbling all the time. We do so well and then something like this happens. I so know we can not live in a bubble but seeing how Ron, Alexander and I are always getting colds and move on and how each virus and bug brings Connor to his knees is proof enough that this fight is one we can not afford to loose. The cause for the last two children with JDM that have passed away (that I know of) was due to Pneumonia. JDM is the name of the disease, but every infection or virus is the battle we fight....
Hugs,
R A C A
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