The Price is Right

Let's play "The Price is Right'. I will present a medical equipment below and you will have to identify its price. You can check how close your guess was buy scrolling down below the picture of the item. The prices indicated in the answers are offers by various online sellers and usually lower than catalog prices. If you get them all right and you are not a parent of a child with special needs or a therapist or someone who works with medical supplies, then please let me know, I would like to personally congratulate you. Enjoy. 

1. A feeder seat positioner and floor sitter wedge made out of a hunk of foam covered with plastic:

Answer: $154- $1080 (depending on seller)

2. A case of plastic bags for the Kagaroo Joey feeding pump (Case of 30):

Answer: $117- $314 (depending on supplier)

3. Jenx Monkey pediatric prone stander:

Answer: $2188

4. Special Tomato car seat:

Answer: $1270.06

5. Rifton pediatric bath chair:

Answer: $482

6. Kimberly Clark Mic-key button:

Answer: $140 - $349 (depending on supplier)

7. Kangaroo Joey enteral feeding pump:

Answer: $715 - $1220

8. Collection jars for suction machine (10 per case):

Answer: $12- $154

9. Mic-key extension set (a tube that attaches to the Mic-key button):

Answer: $19- $59

10.  Rifton SoloLift (for transferring without manual lifting):

Answer: $4740 - $5267

Medical supplies

Despite the fact that Izzy has three medical insurances (one private PPO and two government/state insurances), we have been paying for all her medical supplies out of pocket. It has been more fiscally beneficial to buy them on various Internet sites and pay full price than to pay the co-pays billed out by the medical supply providers. There is no restriction on the selling price of medical supplies and medical equipment; therefore, the markup on them is comparable to diamonds, around a 1000%. But while I can live without diamonds, I cannot live without medical supplies. Actually, I can, but my daughter can't. 

If we didn't have private insurance, the two state/government insurances would pick up the cost of Izzy's medical supplies, but since we have a private PPO, the supplier has to bill our primary insurance first, who may or may not pay for these items. Even if your insurance coverage includes medical supplies, not all medical supplies are necessarily covered, plus there is a designated amount that is payable for a specific item. 

While I usually think that insurance companies are in cohorts with the devil, I can't fully blame them for this policy of approved amount, considering the ludicrously high claims they receive from the medical supply providers. Understandably, they don't want to pay 500 dollars for something that the provider bought from the manufacturer for 50 dollars. Unfortunately, I don't have the luxury of setting an approved amount and I am liable to pay the amount that insurance doesn't cover. 

For instance, the approved amount for Izzy's mic-key button is $76.2, which might be a reasonable figure compared to the manufacturer's price, but a meager help when it comes to the $250-$300 charged by the medical supplier. Now, you can buy a mic-key button from online suppliers for as low as $135 +tax and shipping, and they still must make profit on it, mind you, otherwise they would sell chocolate or rubber duckies. Therefore, it is cheaper to forget the prescription and the insurance coverage and pay the full price online, rather than go through a medical supplier and pay the difference between the approved amount and the supplier's price. 

I have been told by a Medi-Cal representative that CalOptima (Izzy's state insurance) would pay for her gastrostomy tub, enteral supplies and whatnot, they would just need some paper work and a denial letter from our private insurance. The representative also told me, that if I order the supplies through a company or specialty pharmacy, they would take care of the paper work and the billing. So I gave it a shot and sent the prescription for Izzy's mic-key button, suction cups, and whatnot along the required paper work to a specialty pharmacy on Tuesday. They have been trying to figure out whether they can place the order for our supplies ever since. 

During our last conversation, the representative triumphantly informed me that she has finally got a hold of our primary insurance and since we met our deductible for this year, we can go ahead with the order, we just need to provide a letter of medical necessity and I need to fill out some paper work and send it back as soon as possible. I asked her, if CCS or Medi-Cal would pick up the co-pays and deductibles that our private insurance didn't cover but she wasn't able to tell me that. She thought CCS wouldn't but Medi-Cal might. I guess, since our private insurance didn't reject the claim and pays a part of it, Medi-Cal doesn't necessarily kick in? 

"So I might end up with a large co-pay, if Medi-Cal doesn't pick up the difference, right?"- I asked the representative. 

"Yes, we would bill you and you would be absolutely liable for the co-pays."

"I understand that I am liable for the co-pays, but I'm thinking, if Medi-Cal is not covering the difference, it might be more beneficial for me to continue buying these supplies on my own and paying for them out of pocket."

"Yes, it might be more financially beneficial for you"- she agreed. 

"Well, it's just a bit ridiculous that we have three insurances and I'm better off not using them."

Silence.

Food for thought for the holiday shopping season

"I want the consumers to be aware - that the workers have a hard time. We pay for this with blood and sweat. We toil and we sweat. And at the same time the companies never make a loss. I do not want you to stop buying - but you should know about our difficult situation."

The report of my death was an exaggeration

I'm still alive and well, living the exciting, glamorous life of a privileged Orange county housewife who doesn't have to work but can freely indulge herself in managing seizures, mucus, tube-feeding and therapies all day long, or have long, frivolous conversations on the phone with delightful insurance agents. I wish I could tell you that the reason why I haven't blogged for almost a month was my increased busyness due to Izzy's miraculous jump in development after her VNS implant, and I've been just too occupied with chasing her around on the beach, taking her to choir practice or riding unicorns over rainbows. Unfortunately, Izzy is still having more seizures than you would wish upon a child molester, usually hundreds a day, which continues to interfere with her development and my psychological well-being. On the bright side, the VNS keeps Izzy out of status epilepticus and it trains her brain not to seize. I also believe, that it was the VNS that kept Izzy from spiraling into 6 or 7 full-blown grand mal seizure on Saturday when she had a high fever. She stopped breathing, stiffened up, her eyes got big, her pupils got huge and she had a frightened expression on her face - they looked like the beginning of her big tonic-clonic seizure a couple months ago.

While not with the aforementioned utopistic activities, I have been busy nonetheless in the past months with house hunting and transitioning Izzy into the school system as she is turning three years old (whaaat???!!!) soon. The transition involves assessments and evaluations by the school's speech therapist, psychologist, nurse, developmental specialist, and janitor, who upon gathering information will all put their heads together and give their recommendations for Izzy's placement and IEP in January. Izzy has a long history of assessment-dodging: whenever she suspects that there is an evaluation of some sort taking place, she clams up and carefully hides all her skills. Since her special gift of skill-hiding has made me look like a desperate mother in utter denial before, I got smart and now I provide the person who is carrying out given assessment with accurate documentation. That is, I whip out my iPhone and make them watch video footage of my sneaky little Bean as she is being engaged in the various activities that she is refusing to demonstrate at the moment. Of course the godforsaken seizures just make matter worse and hugely undermine the evaluation process. It kills me when she has a seizure in every 10-15 seconds and her charming, goofy self is suppressed and buried under these evil electric brain storms.

As for house hunting, we decided to stay and keep renting the condo on the beach. I know, poor us. As all the foreclosed people moved into the renting market, the prices skyrocketed and went  from high to ludicrous. We did find a gorgeous rental that fulfilled all the criteria we were looking for but the $2550 price tag on a 2 bedroom 1.5 bathroom place made my buttcheeks clench. So I'm still dragging baskets of clothes to the outside laundry room and share the washers and dryers with the other tenants, that is if I remember to put money on the laundry card. On the flip side, I can still take Izzy down to the beach in 5 minutes, a beach that takes my breath away every time.

What else is new? Oh, the Bean is on a diet, because she has gone from black bean to kidney bean. During our last visit, the GI doctor showed me Izzy's growth graph, which was gently sloping upwards until July, then it drastically shot up in a straight line. My little Izzybee has gained 3-4 pounds since July, and if she continues to gain weight at this rate, she will quickly become obese. Because at 3-something feet she is also tall for her age, she is not overweight at this point, but nevertheless she is the size of a 4-year old boy. And while my growth graph also shows a slight upward curve, I'm still 5"2 and 109 pounds on most days, so my lifting power is limited. The GI doctor speculated that the VNS made Izzy's muscle tone more relaxed and she has stopped moving constantly, which consequently makes her burn less calories. Another factor is the cyproheptadine, the medicine that does wonders for cyclical vomiting, but at the same time is also an appetite stimulant. One of the benefits of tube feeding is that I am the one controlling Izzy's caloric intake and I don't have to worry about her munching on junk food. I do have to worry about, however, a super cute, pouty-lipped whiney Izzy kicking me out of bed in the middle of the night because she is hungry. I've been watering down her Pediasure and adding pectin to her second dinner to trick the hunger center of her brain, and so far so good.

The most exciting news is that Phil's parents are arriving tomorrow and after 4 years, we will spend Christmas with family.