Gerardsmomutah

Happy Birthday Gerard! This is for you. All of you who helped Gerard (and his parents) make to another milestone. Gerard turns 9 years old tomorrow, on Christmas Eve. To all the followers of Gerard and his health, supporters of our family and to the GoFundMe account last summer that sent G to the Mayo Clinic in June, a very big thank you for your support. Our friends helped us to get where we are today. You did it! See? You helped us! You helped Gerard get the care he needed! Yes, Gerard is wearing the same sweater he wore last Christmas, and that's just fine! He's here. We're all here, and we're all grateful. There's more to update but I'm short on time. He's still in chemo...and there's no end in sight. He's in a new school that he likes a lot. He has only been absent for illness a few days. He's been well enough to perform in Ballet West's Nutcracker as a Party Boy (Spank Boy role), which he absolutely loved and will be a lifelong

Have you ever had a doctor's referral service call you, leave a message to call them back, then when you do call them back they won't tell you what the referral is for? Outsourcing wastes so much time and money. Wasteful healthcare beauracracy.  #solame #notfunny #cantmakethisup

We've been home from The Mayo Clinic in Rochester, MN for three weeks. Three. Whole. Weeks! Life has fallen back into the routine of running back and forth to Primary Children's Medical Center for follow-up visits and coordination of the continuity of care in Utah. It's beyond amazing how efficient things were there at Mayo after we got settled in. And it's beyond amazing how, with just one doctor (pediatrician) coordinating other specialist visits, how easy it was to get through the system by "waitlisting" for openings getting same-day appointments. Yes, we saw medical students, interns and residents, but boy oh boy, were they the cream of the crop! I can say that I miss the service, the professionalism and the overall compassionate care G received. Now that we're home, I'm still in shock over how it's been three weeks and some of the offices have not returned my calls to coordinate simple visits as ordered by the Mayo docs. It just "i

Gerardsmomutah: Post op

We've been home from Mayo almost a week now. I miss it already. I miss the professional friendliness, the transparency of medical records, doctor's notes and the seamless way the system works administratively. I miss waiting "standby" to get in when we need to get in, and I miss the maximum allowed family members in the clinic. It's a crammed space here. I miss the overall seriousness that we have a kid who is sick enough to be in the said space to begin with. And I miss people looking me in the eye to talk to me = not a computer screen while we discuss why we are here and what happens next. What happens next? We wait 3 weeks for a test. And then we wait some more. Because as usual, Gerard doesn't "look" sick on the outside. Except they can't see that he's blistered and sunburned under his t-shirt. Because the sun penetrates the sunscreen and the tee and he burns because of the medication he takes. All before 9:30 am. Two layers

How is it that providers know you are paying for medical care out of pocket? You're referred to as a "9" or an "8" or another secret charting system, which, if you're anything like me, you crack the code immediately by looking left and right, and listening to comments.  We aren't alone. Half the folks we see are paying themselves. This is s last resort spot - think "destination" healthcare where they are expanding! It's on the front page of all the papers. Genomes, biomes and hormones. Everyone who works here is sharply dressed, educated and polished. Reputation is like the Ritz, Disney and The Met all rolled into one. Let's face it, the art here is worth the trip. I digress... Mayo. Where the world comes for amazing, state-of-the-art care. Where you may wait, like us, a fifty with an 8-yr. old for five hours (yesterday), to see someone as a "standby" patient (called, "checkers") and not see anybody. Because, as it t

Having the kind of talk we had today is not something I've ever prepared for, even under our circumstances of "sick" mode over the past year. We leave for Mayo tomorrow, and Gerard has been so very tired since his chemotherapy treatment. He sleeps a lot. His time awake is spent going full blast - and he's wearing himself right out. Here's why... G-ism of the day: G: Mom, what would you do if I died, right now, today? Me: I would be very, very sad. And I would think that God must need you more than I need you right now, today. (Tearing up, gulp). What would you do if I dided today? G: I'm not sure I could live without you. I would miss you too much. I would be so sad. Let's not talk about this right now, OK? Me: OK. Is there anything else you wanted to ask me? G: I'm going to take a rest now. If that's OK. Please wake me up in an hour. OK? Me: OK. That's a great idea. I think the "birds and the bees" talk will be so much e

Gerard has requested cards/notes/silly messages to help him overcome his medical facility anxiety while we navigate Mayo in Rochester. Please mail cards to: Gerard Hernandez; 1439 Brinker Ave. Ogden, UT 84404. We cannot thank all of you enough for your support during such a challenging year. We're excited for solutions like only Mayo can provide, based on the stories of our friends.

How to handle life when you need help. Accept it. Because you know that when you can help others, you do. So...here it is. And here we are. I don't feel the need to share every single symptom or detail of what's going on with his illness, because I'm consistently met with the reaction of, "Well, he looks great to me!" OK. He looks great. But what you don't see is this happening every day after school: His fatigue level is such that the minute he sits in the car, he's flopped over in five minutes max. It happens at the dinner table (again), which is what happens when he's about to flare. Why is this happening? We don't know. He has a hematoma on his cheek because he fell out of his bed on Monday night. (He didn't want to wake me up)... My kid! Which is why we need to get to the Mayo Clinic to figure this thing out. Yes, I realize he looks great to everyone. Yes, that is the stigma of a "hidden" disease. What don&#

Today I decided to unbury myself from the mountains of medical bills on my desk. We have insurance, yes. We do. It doesn't cover much. It doesn't help much. But it does help a little, and right now a little is better than nothing. The thing is, we aren't seeing results in G's treatment the way we (feel that we) should be after all this time. June first, he's set for chemo again. And I don't want to take him this time. Crazy thoughts... perhaps. So I sent records to Mayo Clinic in Rochester to get the ball rolling several months ago knowing that we'd need their expertise. We have referrals from his doctors, but insurance is denying that he's getting adequate care here in Utah. And the bills are rolling in from all directions. Bills for "reading" medical records. Yup, they can do that. Mayo Clinic bills to the tune of nearly $2,000 today. Just for their doctors to look at two images. Two. Images. And read them, apparently. Can I raise

Sunday was Mother's Day. Thank you to all the mothers out there. You have my greatest admiration and respect. Especially all of the single mothers. They are amazing. A day of reflection. I miss my grandmother. I miss Sunday weekly talks with her. She was like a mother to me when mine could not be. A day of happy tears, getting a beautiful card handwritten for the first time from my boy, sad tears (my mom is gone on to the next world, and I miss her, too), and anxious tears. I never, ever thought I'd be able to have a child. In fact, I was told I would never carry a child to term. It was true. It was a day of how's. A day of me running questions in my mind. I spent the day with my guys (husband and son) and we had a lovely day, indoors...because... rain. I'm always grateful for the rain. We decided after lunch to go to see a movie. My choice. Seriously? No action or cartoons. Yes...! A friend suggested "Miracles from Heaven" when we talked about my

List of "Have you ever" questions this week. Ever make a big mistake that you regret? Ever had an accident you wish never happened? Ever caused an accident you wish had never happened? Well... Both of those things happened this week with a bigger impact and bigger heartache than I anticipated. Here's a couple of other questions I have to ask this week, on my Friday wrap-up: Ever think you're whining too much? Ever think you complain too much? Ever been told you ask too many questions? Ever beat yourself up after making a big mistake? Ever not trust yourself? Ever say something stupid that you regret? Yes, yes, yes. I answer yes to all of these questions of myself today, and more so than any other day this week. Why? Because just when I think I'm getting all of my **it together and feeling more positive about the world, and my life in it, I royally f*ck it up. Or, at least, I think I have. Bleep. Bleep. Bleep. Let me preface this by saying this p

Yesterday, I decided that I needed a place to share information with a broader audience about my life living with a child who has a chronic illness. Navigating that can be tricky for anyone, much less a Utah mom. I'll get to those specifics in a minute. Let's just say that yesterday I hit bottom. You know it if you've been there. The day begins and continues with tears, frustration, anger, fear, prayers, more bad thoughts of when will this get any better, and how will I put dinner on the table and move on with my life. Seriously. If you're a mom, you've probably been there once or twice, maybe more. No more details necessary when your kid is sick. I don't have to spell it out. You know. I am a mom. I live in Ogden, Utah beforewhich, I was not a mom. Maybe this is stating the obvious, but I'm a little bit older than most moms here. (Hint: I'm way past my thirties).  In fact, my first day at a new job in Utah promted the question I never thought I'd