Final Update

Tonight I have too much to say for a Facebook post. Today has been an over zealous roller coaster with way too many ups and downs. I got a good 5 hours of sleep last night, and that's consecutive hours too! Jayson came to see me and bring me real coffee before he went to work, only to find out when he got there that for whatever reason, his company doesn't work on Columbus Day. Which was nice because he got to spend the day with Jeffrey. Then they both came back to visit, right around the time Kim and Kaitlyn showed up to visit. Jeffrey, of course, went straight to the clubhouse, so Jayson and I visited with the girls and then got a few minutes to ourselves before I went and picked Jeffrey up. I did Jaxson's first distraction before picking Jeffrey up, so Jaxson got to calm down with daddy. Jaxson hit his head today at some point, I can't remember when, and this afternoon he managed to pull out yet another IV. Mind you, it took the IV team 4 sticks to get it in there, so the thought of placing another line filled me with dread. Thankfully, the doctors opted to start his oral meds first and see how they do. I pray that this works so we can go home tomorrow. Dr. Pearson will be in tomorrow, and I cannot wait to talk to a doctor that knows Jaxson. Tonight's distraction was horrid. I actually broke down after I got him calmed down. I won't put you through knowing the details, just know that I have new concerns now. For one, Jaxson has a nice little rash on his arms. We think it's whatever the linen is washed in here because it's happened before, but when the nurse tried to order sterile sheets, she was told they don't do those anymore because the linens are washed with hypoallergenic detergent. We use ALL Free & Clear at home with no problems, so I'm not sure what they're using, but if it's not the cause then we need to figure out what is. Second, Jaxson's infected pin turned a nice shade of purple after his distraction and cleaning. I have no idea if that's okay or not, and the nurse hasn't heard back from the doctor yet. It's still oozing and ultra-extremely sensitive. I mean, you can't even brush his head anywhere near the pin and expect him not to cry. Third, Jaxson's little face and ears always turn bright red after a distraction, and sometimes he gets a little rash around his neck. Tonight, his skin didn't pale back to it's normal color for over an hour. Now, that could just be something related to his heart condition, and I can accept that. But I really need to talk to Dr. Pearson. He probably knows this kid better than any other doctor in this place. And then tonight, to end the night on a happy note, my niece did the nicest thing for us. She took her hard earned money (she's 11, so it's definitely hard to earn!) and bought one of Jaxson's shirts. She knew full well that if she had just asked, we would have given her one, but she wanted to contribute and this was how she chose to do it. I'm tearing up thinking about it! She is such a special little girl.

If you've made it past my runon (I'm sure there's a few) sentences and all-over-the-place rambling, thank you. I am trying to be more transparent in how I do on a daily basis, and I felt that this had to get out. I, me, the non emotional, logical person I am, cried at least twice today. I don't think you can ever feel true fear or dread until you've had to sleep (or stand in this case) next to your child with a hand on his chest to make sure he's breathing. Or until you've watched his skin change color and been forced to wait to act because he might just be cold. It's terrifying. It's something I do not think about on a regular basis, not just because it's scary, but because part of me thinks it's irrational to feel that way. I mean, look at Jaxson. He's so happy! Always! It doesn't matter how many times we come here or how long each stay is, Jaxson is as happy here as he is at home. So how can such a happy kid, who has to be in a tremendous amount of pain, have anything seriously wrong with him? Oh yeah, there's those silly pins sticking out of his head. Even once the pins and the distractor are removed, there's no guarantee that those sutures won't grow back together too quickly again. There's no guarantee that the fluid and possible chiari malformation will relieve themselves with this newfound space. There are so many unanswered questions with Jaxson. And no light at the end of the tunnel as far as finding a syndrome that matches all of his symptoms. I honestly don't care what it is, I just want to know so that he can be properly treated. I so much feel like the doctors are dissing something. Don't ask me what, these are some of the best doctors in the world and we are incredibly lucky to live so close. But there's just a nag in my head, constantly, about this. Jayson would tell me that I worry too much and that the doctors know what they're doing. And he's right. But that doesn't change what I think.

Looks like this turned into an actual blog. So basically, here's the plan: Dr. Pearson will come in and look at Jaxson tomorrow. We'll see what he says about the infection, the skin changing color, the potential allergy issue, and hopefully go home. I suppose I didn't need a blog to tell you that, but thanks for humoring me tonight. God bless, updates to continue in the morning.