Updates and Moving Forward

The Boys

[UPDATE] On Friday I was freaked out. Kyle was sick again and I was sick of him being sick again. With a fever that was not letting up and after a frustrating day of Kyle seeming to get worse instead of better, history told me that we had better do something. I knew it was Friday and we did not want to wait until Monday. I was not up for a Sunday ER visit. Kyle needed to be seen or at least I think he needed to be seen. I called and spoke with my very favorite nurse at my very favorite pediatrician’s office. She is well aware of Kyle and his recent health history. “Beth, you need to bring him in before the weekend starts.”

Herein lies my current frustration, “Am I doing too much or not am I not doing enough? Is my measured approach the right measured approach?” and “Should I just wait and hope that one day Kyle is better, I mean, really healthy?”

So Friday evening Dave, the boys and I headed to Salt Lake City. It was cold, snowy and wet. Once in the SLC Dave dropped Kyle and I off at the pediatrician while he and Eli ran errands. When we were seen Kyle still felt super crappy and still had a fever yet his Quick Strep was negative. What does it mean? We really are not quite sure if this is just how it is going to be while Kyle’s immune system continues to heal or if there is a bigger underlying issue. And this is where my frustration lies, no one seems to be able to pinpoint anything when it comes to this whole Stevens-Johnson-Syndrome experience. When I don’t think it is a big deal, it is a big deal and when Kyle is simply sick like every other kid, I cannot distinguish if his being sick means more or is nothing. My brain hurts and I am trying to roll with it. It is my job to be responsible and I just want to know if I am doing it right. If I do not roll with it, I think I make Kyle’s life worse. I try to let nature do what nature does, yet my son continues to get sick.

The doctor says his tonsils look terrible although I know for a fact that tonsils can look terrible when you are sick and it could be nothing. And because Kyle continues to get sick and sick so often, we are now being referred to an ENT who will check out Kyle’s tonsils and an Immunologist. With prescriptions and referrals in hand I called Dave to ask him to come back and get us. Dave did not tell me that he and Eli were literally about to order some food when I called. Instead of eating, they came and picked up Kyle and I. Always worried about Kyle, Eli waited until he knew Kyle was ok to tell me how bummed he was that he and Dave had to come back to the doctor’s office right when they were just about to get something to eat. That was Eli’s gentle reminder that I always need to make sure Easy E is not forgotten too. Balance.

If and when we find out more, I will let you know. For now, we are trying for normal. I (really Dave) just the boys to swim team and tomorrow we celebrate Easy E’s birthday! Thank you for caring about our boy!

14 thoughts on “Updates and Moving Forward

  1. How can you ever think that you’re overdoing it when your child has the sort of health issue that Kyle has? I find this difficult, too. My son is diabetic, and I know that what would make me feel mildly gross, makes him feel a lot worse. I know that what is a simple cold for me, could be the onset of ketoacidosis (in addition to the cold) for him. I always tend to second-guess myself, and end up overreacting. Diabetes is also one of those things that you just never know what’s going to be serious and what isn’t. It’s so hard because other people don’t understand that it’s not just a “take some insulin and get on with life” kind of thing, it’s a “shit, does he need more insulin now, or less? Is he getting enough to eat? What about ketones? His blood sugar is fine, but he’s still feeling bad…what did I do wrong???” kind of thing. In other words, I feel ya! You’re a superb mother, Beth. Do what you’re doing, better to overdo it than underdo it, is my motto! 🙂

  2. Sorry, didn’t mean to make that about us, just wanted to say that your reactions are just fine. Don’t second-guess yourself when you’re taking Kyle to the doctor for something that might seem slight…SJS is nothing to mess around with! You said yourself -advocate for your child!

  3. Lula, Thanks for having my back. This past year I have often thought about you. I know you get it and I know you are farther down this health-issue road than I am. I wondered how how dealt with things and am so grateful you get it and are throwing some validation my way. You are a good mom and he is so lucky to have you watching out for him! Go you! 🙂

  4. DUDE! and you and Dave came to help me on Sunday????? I have no words to tell you how wonderful and wonderful you are. You are wonderful. Keep us posted on things.

  5. You can never been too cautious or concerned when it comes to the care of your children. You are given a special gift and it becomes a way of life to do what is best for them, protect them and love them. Healthy, sick, happy or sad, the role of a parent has no greater job that being there. I am sure it is “getting old”, in a way everything does, but the thing that makes you adjust, the thing that makes you have a “let’s roll” attitude is the fact that you are a Mom and Dad, and love is unconditional and without boundaries. Your care and dedication to your children and each other during the best of times an the worst of times is awe inspiring. I cannot express enough that you both have been exemplorary examples of what parenthood and marriage should be. God bless you all and may he continue to guide you gently with his hands and give you what ever is necessary to continue.

  6. You may second-guess yourself when it repeats and “gets old,” but you are Kyle’s most staunch advocate! Here’s hoping you get some answers soon.

  7. You articulate so well what it is like being the mom of a child with chronic health problems. Every cough, every sniffle is magnified. Will it mean a hospital trip? Should we call the on-call doc? Every pediatrician and nurse in our physician’s (very large) practice knows our family. I hate how much I worry and then I worry that I’m not worrying enough. I am hopeful you get some answers from the specialists!

  8. You are an awesome Mom and you are taking great care of both your boys. With a compromised immune system, and all the still unknowns with the SJS, it is good that you are being over cautious. You are fighting for the best life possible for both your boys. It is a difficult balancing act, but you do it with grace.

  9. Beth: You are an awesome mom. It is more then clear how much you love your boys. I can’t imagine what you are going through. Too see Kyle so sick, I know it knocks the wind out of you. I pray that Kyle’s body heals it’s self. You gotta go with your gut on things. You have great instincts and always have. I love you bethy!

  10. Melly,

    You are so good to me. Life will be ok and it will be ok because I have the love and support from good friends like you. Thank you, Mel! Thank you for having my back! I love you!

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