My Life Is A Domino Effect

You’re going to be jealous and wish you had my life if you read this. I’m just warning you now. 

I started feeling bad Sunday. Yesterday, I spent the majority of the day in bed and made a doc appointment for today. I knew I had head congestion and ear aches like always with a sinus infection but this time was a lot more pressure and my upper teeth hurt. My throat was sore but in a different way than it is from drainage and I just felt so weak, dizzy and plain miserable.

I saw my amazing Nurse Practitioner this morning and the verdict was:

Flu A +

Sinusitis

Lungs mostly clear 

Red ears and my right ear drum is bulging 

Red throat 

Strep negative

COVID negative

I got a sinus cocktail and antibiotic shot as well as a script for antibiotics to take for 10 days. Woo Hoo! I do have less pressure now as I type this and I can partially breathe through my nose now so that’s a plus. This is only the second time in my fittywon years that I’ve had the flu! I’m not thankful for the flu but I am thankful I haven’t had it often.

Looping back to a sore throat, WHAT in the name of CepacolEquateChloraseptic is there in a throat lozenge that requires me to provide my gubment ID, have it scanned and me sign for my order?????! AND limits my purchase to one box? I mean seriously!

I did manage to get TWO boxes because I ordered one name brand and one off brand. BOOM! There’s more than one way to cook an egg. 

Where the domino effect comes in…..

Mini Mayhem had a GI appointment today. Originally it was in January but was rescheduled due to a conflict with the doctor. Even if I could have driven out to Humphreys, I can’t go into a LeBonheur clinic with the flu!!!

As soon as I knew, I called her doc’s nurse and she called back really quickly. (Good darn thing it wasn’t Neuro I was trying to reach because I’d still be waiting at Christmas.) The next available GI appointment is JUNE and she said there was not anywhere on his schedule to get her in sooner. 

Why is this problematic? Allow me to explain. 

Mini Mayhem has to have a prescription every 12 months for her formula and feeding supplies. The doctor cannot just send over a prescription, it has to be accompanied by a clinic note (proof of an actual doctor visit). This is a requirement of Medicaid, not the doctor, not the hospital, not the company supplying her formula. If the Rx expires, the company cannot send formula or supplies, or they are noncompliant with Medicaid due to failure to ensure medical necessity documentation requirements for the item or service billed. 

What happens then? This could lead to the U.S. Department of Health and Human Services Office of Inspector General (HHS-OIG) and the Centers for Medicare and Medicaid Services (CMS) potentially enforcing any or all of the following, penalize the company monetarily, impose an administrative sanction or revoke their contract and or license. 

If you’re wondering why I know all that crap, it’s because we almost were in the same situation last year and I asked what happens if the Rx expires?? Because I have to have a plan, a backup plan and then plan for a backup plan to my back up plan. 

So, what does it mean when you can’t get an appointment before the Rx runs out? 

You don’t have formula for your child for up to 2 months!!!!

Before anyone wonders or asks, I have already covered these possibilities…….

• They don’t do TeleMed appointments because insurance doesn’t pay or pay enough. 
• I can get some samples from LB but not enough to last 2 months because they usually don’t have that much.
• If her pediatrician were to see her in office and write the Rx, there’s much more paperwork involved, especially for doing it just this one time, since he’s never done it before. He prefers for her specialist to continue providing what’s needed. 
• I cannot just go grab another formula because her current formula 1) is by prescription only and cannot be purchased at a store 2) is lactose free and peptide based and when we have been in a pinch before, everyone I knew with any formula to spare, the formula was amino acid based. Not to mention, no one has TWO months of extra formula so to gather up that much formula would mean it would be different types. Let’s not even discuss the math involved to calculate the amount of formula and water to give her the calories per ounce she needs, and multiple brands would likely send her stomach into major protest. 
• Why don’t I make her appointments early in case something comes up? I did! I made it for 9 months out but the doc got stuck out of town and had to reschedule and it was 2 more months before the rescheduled date putting us at 11 months with one to spare and there’s nothing available.

The nurse explained the sitch and asked the GI doc if he could check his personal calendar to see if there is any way possible to fit us in before mid-April. He didn’t have it with him today so she said she would call me back Friday or before.

**UPDATE** 3-21-24 The nurse called, and we have an appointment for 8 am on Thursday, April 4th!!!! 👏👏👏

I get compliance; I do. HOWEVER, there is SO MUCH government resources and money wasted due to lack of audits, loopholes, and incompetency due to lack of knowledge that it ends up causing problems for doing right or those who do their best. If multiple doctors document in a patient’s medical record that there is absolutely NO possibility that their medical condition will ever improve to the point that they will NEVER NOT need <insert need here>, unless Jesus comes back, then 12 months should be extended to 24 or even longer, or there should be a grace period. OR hey, let’s cut out some red tape all together and if ANY doctor has documented the patient being g-tube dependent in the last year, let’s get a copy of that, and not care who writes the actual Rx!

There are other wasteful practices that I could go into, but it is so ridiculous that it just pisses me off. The people making these policies and procedures apparently DO NOT have children with exceptional needs!!!!! 

I would love for the state to have a Medicare and Medicaid focus group of people who actually USE and LIVE for the needs they provide and see what changes could and should be made. I mean crap fire; we aren’t building rockets here! 😡 **Knock Knock** Any politicians out there reading this????

Mini Mayhem had fever earlier today and felt bad. Early this evening she had a temp of 102.7. 😩 She has a combo of congestion and drainage and when she tries to “talk” or make noise, you can tell she has laryngitis. 

I’ve been falling asleep off and on and hated the idea of her being in her room and me potentially missing her needing me, despite having a video monitor. Since she is already sick, her nurse and I talked about it and she’s in the bed with me for the night. I’m well on my way to likely finishing up a newly opened pack of baby wipes from wiping our noses and from her sneezing and snot spraying my arm. Not to mention the inevitable soreness from her hitting me over and over and over. For her, it’s not hitting. She’s just reaching out for my arm to make sure I haven’t gotten up and R-U-N-N O-F-T (IYKYK) but because of the uncontrollable spasticity of her CP, it’s an extended arm smackdown or an occasional punch. 😮

Do you wanna know what it is like taking care of a fussy 12 year old that can’t verbally communicate her feelings and ailments and you are trying so hard to comfort her, but you still feel like crap on toast? I’ll answer that for you, NO! 🚫 No you don’t. Our nurse is typically off on Wednesdays but asked if I wanted her to work tomorrow and be off Thursday. I said YES/, pleaseeeeeeee. I wanted to hug her neck but I ain’t trying to increase the possibility of her getting the flu. 

There’s not much she can have when she’s sick so it’s hard to watch her suffer. She can’t take anything as a prophylactic to boost her immune system because, to keep Karla happy, she’s on immunosuppressants. She can have a limited amount of Pedialyte if she’s vomited or ran fever. She’s dehydrated quickly in the past with low grade fevers. Thankfully not as quickly since Karla moved in. I will usually start with an increase in water by a bit and then move to Pedialyte or Gatorade Zero. Gatorade because it has a lower electrolyte content and no sugar. It is a push-pull balance to replace some electrolytes but not send her lab work skyrocketing on her sugar, potassium and chloride. She gets sodium supplemented daily so I’m not especially worried about that one. I can only use Tylenol, Robitussin DM, a cool humidifier (but sometimes it doesn’t help or will make her worse), VapoRub, VapoCream, chest percussion, breathing treatments (that she handles remarkably well) if it calls for one, nasal saline drops (to which she responds by acting as if she’s being water boarded) and using the NoseFrida to help with drainage. If you want to know what the NoseFrida experience is like for me, go wrestle an alligator. 

Yep, that was a lot, but it sure has taken my mind off my earache. I started typing this around noon:30 and continued it off and on today between resting, naps and phone calls and tonight between taking care of my sick girl. 

Now aren’t you so jelly that you don’t get to live this life? 🤣

On a serious, non-sarcastic note, I would be extremely grateful for prayers for my kiddo's healing, Karla’s happiness and avoiding a hospital stay. 

This is her contradictory shirt she is sleeping in tonight. At the moment she is sleeping and seems to be doing so comfortably. May it last all night! 🤞