Mystery

When Zane’s formula didn’t arrive at the beginning of last week, I decided to call the home health supply company to see where we stood on the insurance approval. I was surprised to hear he would not receive the formula as soon as I expected. Apparently, Zane’s insurance still had not approved his last order of enteral feeding supplies. In fact, when the woman called insurance, a Medicaid employee told her it would be upwards of two weeks before she had one. Of course, without an approval, home health could not ship out another order. I totally understood. If insurance denied Zane’s food, then the company would have to eat the costs. The woman I talked with was so nice. She offered suggestions for obtaining the EleCare Jr. while we waited: The Oley Foundation (didn't have the EleCare); purchasing it directly from Abbott (not realistic at almost $300 for a week and a half of meals). But it was nice of her to try to help us out.

I called the pediatrician’s office to see if we would use an over-the-counter formula in the interim, explaining our dilemma to the wonderful receptionist there. However, none of those formulas would give Zane adequate nutrition while we waited on insurance. He would have to suffer with the gagging/retching/vomiting for two more weeks. I felt so guilty giving him the soy formula, but he couldn’t not eat.

So I was pleasantly surprised when—the very next day—Zane’s shipment of EleCare Jr. arrived by UPS. I felt endless amounts of gratitude for the woman at the home health supply company, believing she worked her magic to get the shipment to us. I couldn’t wait until the next business day to call and thank her.

When she answered the phone, I thanked her endlessly for sending the formula since it had come from their facilities. “It wasn’t me,” she said. She looked up Zane’s account and told me she was still pending an approval. Shipment was still pending, as well. I called the pediatrician’s office, thinking they found a way to get the formula from the local office after hearing of our extensive wait. “It wasn’t us,” they said.

I so wanted to thank someone for helping out. But—as much as they may have wanted to—no one within the system did. I immediately thought of Zane’s Aunt Sara. She loved Zane so very much. Could it be within the realm of possibility that she had some influence over the person in the shipping department, enabling Zane to get his much-needed formula sooner than later? I don’t know. But it certainly would be just like her to do something as wonderful as that. And no one else is owning up to the shipment.

Love ya, Sara J

Test Results

Zane remains an enigma—at least his symptoms and what they mean do.

His pediatrician called yesterday to say the tests all came back normal. A couple of visits ago, I asked whether or not Zane’s soy formula could be the source of his troubles; perhaps he developed an allergy or intolerance to it over time. She wanted to take one step at a time—which is totally understandable. Now that the tests shows no obvious gastrointestinal issues, she is pursuing that line of thought. She sent a prescription to Zane’s health supply company for a change in formula. The company has to obtain insurance approval, so we won’t have anything until next week. He is going to give EleCare Jr. a try. It is a hypoallergenic formula for kids who have food allergies and the symptoms Zane has exhibited. I’m looking forward to giving it a try. I sure hope it works because the next step will include seeing a GI specialist in Denver.

Keep good thought and fingers crossed, please.

If You're Having a Bad Day, Read This!

I had loftly plans for myself this morning. Zane’s medical tests at the hospital (an upper GI and blood work) were going to provide me with some well-deserved reading time. With a handful of toys and my book tucked into my bag, Justin, Zane, and I headed to town.

I should have known it was going to be one of those days when the low-gas light came on during the ride to Durango. I stopped to fill up before dropping Justin off at Jeff’s workplace, making us a little on the late side for our appointment. Just a little late; no big deal.

When Zane and I rolled into the hospital parking lot, all the handicapped parking places were taken. Apparently, it didn’t matter. When I opened the back of the vehicle to pull out Zane's Kimba, I realized I had left the seating insert at home beside the dining room table where I last fed him. I grabbed the bag (with reading material, toys, and diapering materials), my purse, and Zane and headed inside.

As we registered for his procedures, I caught a whiff. Nothing significant; he just needed a simple diaper change. I asked if we could skip off to the bathroom before his tests. The woman said it would be ten minutes anyway, so we were in good shape.

Of course, life is not so simple. Once we came back to the lobby, I sat Zane in the chair beside me. He started coughing and retching—the very things he was at the hospital for anyway. I did a quick diaper check again. All was good. Until I lifted him up. There was stuff everywhere: on his legs, on his pants, on MY pants, on my hands, and even on the waiting room chair. Oh. My. God. What to do? I rushed him off to the bathroom.

Stuff truly was everywhere. The woman exiting the stall must have thought I was undertaking a Frankensteinian procedure. The protective gloves were on; the pad and incontinent care spray were wildly tossed on the changing table; Zane’s clothes were off; the bag had been dumped recklessly on the floor with extra clothing, wipes, and paper towels. What a mess! After ten minutes or so, Zane was clean as a whistle. Mom: not so much. My pants had stuff smeared all over them. As hard as I tried…the signs were evident. I had been pooped on. The smell lofted up toward my nasal passages. But the show must go on. We returned to the waiting area, where I diligently cleaned the chair amidst staring eyes, then was whisked away by a very patient and understanding hospital employee.

I apologized to her, the technicians, and to the radiologist, as well.

The upper GI went well. The blood work? Well…no! He was unhappy before they even stuck him. But when they did, the tears really flowed. They couldn’t make their magic work on his left arm, so they stabbed the right. There were some mumblings, which I took to mean they were having a challenging time with the right side, as well. All the while, Zane wailed. But they finally drew the 5ccs they needed.

We zoomed out the lab area, past the doctors, nurses, administrative staff, and technicians lined up at the coffee shop. They simply stared at us: me with my poop-stained pants, toting a child who—for all they knew—had the most horrid mother in the world.

So after baths, showers, and laundry, I am feeling slightly better about my day.

The morals (yes, there is more than one):

1. Never administer Miralax to your child the day before a hospital procedure.
2. Don't get too exited about reading when taking a child to the hospital. Better to just stay up until midnight to get that book read.
3. Truly, don’t sweat the small stuff. Sure, poop everywhere—by all intents and purposes—seems like a big deal. And, to be honest, it is no picnic to go through what I did this morning. However, it’s still small stuff. With a little problem-solving and a lot of cleaning products, we got through it okay. And now we have a comic (albeit gross) story to tell.

BTW...the hospital staff was so nice and nonjudmental. I truly appreciate them for those qualities.

Good News!

After all the stress of a denial letter, things have (seemingly) been resolved. After another call to the woman at the Department of Human Services, I was told rather nonchalantly she had the packet in her mitts as we spoke. But we are proceeding with apprehension because it is hard to trust someone who erroneously sent out a letter stating all of Zane’s medical benefits had been terminated as of 7/31. I wrote a follow-up letter to reiterate what she had told me: there would be no lapse in Zane’s coverage.

On a happier note…Zane is mastering the art of standing! He has worked hard all summer at standing from a seated position and playing independently at a bench. I will stop writing since the video paints a much better picture. Check out our little guy. He is incredible!

Health Issues and a Bureaucratic Mess

Normally, I do not post twice in one day. In fact, I am doing well if I post once a month.

However, the calm and uneventful stretch we’ve enjoyed has suddenly taken a turn. After speaking with the pediatrician today--being told she wanted to consult with a GI doctor--she called back. She decided it would be a good idea if Zane had another urine culture in the event his symptoms are caused by a UTI. So we dropped our plans (sorry, Justin) and headed into Durango. Zane’s urine was clear, so we are proceeding with an upper GI and blood work either tomorrow or early next week. I need to call the hospital tomorrow during business hours to see what they have available. We are also starting osteopathy again next week.

We arrived back in town around 6:00, picked up dinner, and stopped for the mail. I recognized the envelope: State of Colorado—Durango office. I opened it. Much to my surprise, the letter stated Zane’s Long Term Care and Medicaid benefits had been terminated as of July 31^st because we failed to return the redetermination packet. Of course, this is not at all true. In fact, Jeff hand-delivered the packet I completed at the beginning of July—almost two weeks prior to the July 15^th deadline on the paperwork. So, clearly they lost it.

Since it was after business hours, I left a message for the case manager who sent the letter. So did Jeff. Hopefully, she will sift through her piles of paperwork and find it. As Jeff said, “It is in that building somewhere.” I am hoping for a quick and easy resolution. If not, we are looking at scheduling a hearing. In which case, I will contact The Legal Center for a lawyer. We have never failed to complete anything surrounding Zane. Never. I don’t want to dust off those proverbial boxing gloves, but I will if I have to.  I've done it before when another agency spitefully tried to revoke Zane's Medicaid, and they lost.

Please think good thoughts. I’ll update when I find out more.

Next Steps



Despite all the efforts of Zane’s pediatrician, she has not yet found a solution to his vomiting/coughing/gagging. We tried switching his prophylactic antibiotic—thinking he had a reaction to it. We changed his allergy medication and increased his Miralax dosage. Yet none of this has worked.

After speaking with the doctor on the phone today, our next step appears to be testing. Poor kid. It’s really the last thing he needs. He has been through so much already. She is going to talk with a GI Specialist and see if he/she wants to proceed with upper and/or lower GIs. I had an upper in the past, which was not so bad. I had to swallow barium. Not sure how that will work with Zane since he does not consume quantities by mouth. IV perhaps?

Keep good thoughts for Zane. He has a lot coming up within the next month or so: GI testing, fitting for hearing aids, and his surgery on September 12^th.