Monday, March 19, 2012


Gary is doing good. After a visit to the ER last week for a fever that wouldn't break on Wednesday, he seems to be bouncing back.

101.4, 102.2 even with tylenol, we called to see what they wanted us to do. The kids were just arriving home from school when we packed up. Elexis was just as upset as Gary was about having to leave. Elexis was turning ten the next day. I couldn't tell her whether or not we would be returning home. We can only be twoo careful however. The hospital is dreaded. I am sure it is for most people. However, when the effect of distraction because something outbod your routine is happening that tends to distract you. When you have been doing this for three years, that whole concept only plunges you into the unpleasantness of the ER visit. Gary wasn't sick per say. It was just the pesky fever that kept going up despite treating it. An emergency room isn't the best place for an immune suppressed kid to be but we had to do what we had to do. Not sure that is playing it entirely safe especially since it was like a scene from The Walking Dead (a tv show a few members of my family watch that I can't because it is too intense, zombies, blah). When they finally got us back to room, the rheumatologists intern who had just seen us from the week before popped in to say hello. She was on her way out for the day. We talked about what was going on. She said they were talking about admitting us, and getting the medications going that we were waiting on starting until he recovered. After an IV start, and one nasal swab later, labs looked so much better than they did the week before. The 5ml of steroids are bringing those labs down nicely. Not to mention it is also knocking out the heliotrope rash. Inflammation markers are still very elevated, a few started to trend down. The ER doctors came in, went through the usual student doctors. A mirage of questions, me educating them on what they are dealing with. Pleasantly, the student doctor knew of JDM, and DM as well. His neighbor, while growing up had JDM, and so did the father of this child. I always thought that was very rare but it is said to be genetic. The father I am familiar with. I remember reading about him. He was a famous football player in the seventies. Suddenly he became very tired. Running the football field became a huge challenge for him, ending his career. Anyway, another lab came back from the nasal swab. It tested positive for a virus, the coronavirus. Basically it is the common cold virus that is respiratoryish. It can cause many things. They asked if we wanted to go home since we knew what was causing this fever. I wish that made things easy. I knew getting that diagnosis was my chance to escape. There is nothing they can do for a virus but with a child who has what he has and its all complicated, you would think they would want to keep an eye on things. The rheumatologist who was attending did not even bother to come talk to us. They got the go ahead to release us. Our whole ER ordeal took about seven hours. We had spent enough time in the hot zone. I was feeling like the best thing to do was to get the heck out of there before we picked up something else. After sharing a bathroom with a little girl who looked terrible and another kid who practically puked at our feet, yeah, done. Gary was in the bathroom about ten times. I had no choice but to run out of there. My favorite part of the ER was by the time we got there, the fever broke. Ugghhh!

The next morning I called rheumatology to see if I was suppose to hold the methotrexate shot because of the virus. They called back and said yes. Later that day one of our doctors called to say we were suppose to be admitted. The wanted to get to work on stopping the diarrhea that had returned. Somehow, the ER didn't get the message. Neither did the rheumatologist on call. Everything happens for a reason.

One of the plans after the Thursday meeting is to bring us in. In order to give Gary immediate rest and healing to his colon, they want to check him in and put him on TPN, while on NPM. That means for a few days he wont be allowed to eat, and given nutrition by Iv. Uh, no. They want to start remicade which I am comfortable with of course but not the whole TPN thing. We have been on that before and it is difficult. Very difficult. I mean, I only will approve this if he just doesn't get better and it is completely necessary. I asked her to give me a few more days. i told her want this virus to cycle outbofbour house. Yep, we all ended up getting sick. Sneezing, congestion, nose burning, ect,. Give him a little more time to improve. Let the steroids keep working. The flare has come under control. He stopped having blood in his diarrhea. Let's just see. If I don't like what is going on, then I will bring him him. She was completely agreed. She said they are willing to let me drive this.

Where is the car headed? Well, he seems to have had a good day yesterday. The day before he did go 17 times. It wasn't all diarrhea but he still has one set of active bowels. The next day he went 8 times so big improving. I still am getting the feeling we are living on borrowed time however. I had hoped to make it too our original appointment on the 27th. On Wednesday he turns 5. No birthday in one of his least favorite places. We will see by the end of the week.


  1. I admire you strength Erika. You are a very strong mom and it seems like you are learning a lot through this sickness.

    Praying that this virus will be out of your family soon. I know what it is like, being immune suppressant myself, it stinks! My kids just had a cold and I got sick but it by passed being just a cold for me and went right into pneumonia.

    Praying and praying for you all.

  2. Hi my precious beautiul rockstar friend and momma Erika! This JM and DM stuff stinks like pee uuuu! I am so sorry ya'll are battling it again. Seems it pops up at the crazy-est of times. B-Days etc., I had aceptic menegitis from the IVIG on K's 5th bday party terrible, G was home on his birthday right? Bless his heart he is my hero! Is he into anything special now days? Spongebob, superman, wrestlers, we would like to send him a late bday super hero gift but I need your addy again lol chemo brain lost it ha! I am sorry all of you have been sicky and he has had the virus bless him! I notice when I flare and get really stressed I will have bloody runs I know way TMI! I am more than elated that his swelling is going down as is the flare steriods r rockstars for that although u and i both loathe the steroids! Why is he in hospital now! Prayers keep going up! I will message u my cell if you don't already have it and u text me anytime with any question
    love me

  3. Erika,
    You always talk about me being bad a but the truth is YOU ARE and your lil Gary is such a super hero and inspiration to me and so many! I feel like I know ya'll! Hey will you message me your addy again I misplaced it lol and K wants to send him a late birthday gift! What is he into now a days? Sorry for all the crazy I hate DM and JM it is just the pits! I read all of this on facebook and was so worried and I am glad you explained it all to me and I am glad he is doing better and I pray all the meds he is on now will be the magic combo. That is the major trick is finding that magic combo and it is so nerve wrecking trying to find it! I am in a flare now my meds are wearing off I have surgery Friday JHU in a few weeks, K's rheumatologist appointment girl I am praying so hard for ya'll and if I'm not round these parts to much in the next few weeks I am thinking and praying always know that...hey I think I am gonna maybe name my port Murp hahahahah like you know the word on Jersey Shore Deena uses Murp...well I think DM and JM is major murp too hahahhah

    Lets beat this stuff in the ground once and for all I am on your team always will be love you lots and lots

    hang in there momma