Wasteful Wednesday- she is not smelly

This post is on another DME shipping mistake, which happened a few years ago. Propimex-2 is the formula that Talli uses to provide her with essential protein without the offending amino acids (the ones she can't break down). We get 9 cans each month and they take up a bit of space in the shipping boxes.

I opened a large box, although not large enough to contain the formula and other loose supplies, and there was no Propimex-2, just 9 sticks of deodorant. The DME provider asked that we ship those back to them, they must have been costly generic deodorant.

I do wonder what insurance plan is covering deodorant for their subscribers.

Talli may smell like a fish (a common side-effect of taking non-IV Carnitine), occasionally ketones, and sometimes the unique smell of PA, but at age 5, she definitely didn't need deodorant.

Wasteful Wednesday- another DME delivery mistake

The title of the post isn't very good because our DME provider very rarely gets Talli's order accurate.

We get 2 cases of Polycose each month, which is 12 cans. Polycose is pure glucose-- we go straight for the blood sugar rise! It contains no protein whatsoever and is a main component of Talli's formula. In the past, when she has been sick we can use more than a can a day.

So not too long ago, Steve, dropped off our supplies and the boxes looked a little odd (again, not unusual). Instead of polycose, we received 2 cases of Ketocal. Ketocal is a high fat, high protein formula for the use in those with uncontrolled seizures.

IF we were to mistakenly use Ketocal for Polycose Talli would be getting 22.5g of protein, 108g of fat, and 1080 Kcals instead of 0g of protein, 0g of fat, and 465Kcals. I am sure that Talli would have been vomiting long before we could have given her that much fat and protein.

The DME provider had the formula picked up and shipped out the polycose after I called them. Mistakes like this makes me nervous for those who aren't hypervigilant and those who do not question a problem. It also makes we ponder the literacy rate in this country and liability issues.

But Talli is safe from the inappropriate formula.

The next DME mix up to report on-- "No, she doesn't smell like that!"

Steve, making my life easier

There are some things that I do to make my life easier in handling the chaos that is my life. I try to have items delivered to my home instead of going out and purchasing them at a brick and mortar store. It is very painful for me to take all three of my kids with me shopping. Talli will start straightening products on the shelves at the store, there will be a lot of negotiating at the grocery store on purchasing foods not on the list, and I am just far out numbered. O is in the midst of the terrible 2's and instead of screaming he will show off his verbal skills by calling me names and if that doesn't get to me sufficiently he will just start pinching my hands that are being used to push the cart.

So if there is a free shipping offer somewhere or I can use Amazon Prime, then my life is just so much easier.

My kids think that if they want a toy that Steve, the guy in the brown truck, will bring it to them. They say it like he is Santa.

Talli thinks that all things can be acquired on amazon.com or ebay; she did hit the nail on the head on that one.

Here is a picture of what Steve brought us today with the exception of my husband's birthday present that I have already hidden away.

There is-
- Talli's monthly enteral supplies (I have not yet checked it for accuracy, but the volume is not quite right, so I am guessing that at least one case of formula is missing)
- hand soap (we go through it like water, especially when O tries to drink it)
-the expansion pack for The Settlers of Catan (for an adult game party tomorrow).

This week I have also had brought to my door:
- a pair of discontinued Saucony running shoes from Shoes.com
- socks for M, just to use a discount at Shoes.com
- a 1987 dinosaur costume sewing pattern on ebay (there was some competitive bidding on this!)
- a case of latex-free Coban from 3M for wrapping Talli's extension with
- a case of pop-up books I got off Totsy.com (they are elaborate and NOT for little kids)
- Dracula: A Classic Pop-Up Tale from Amazon.com, as it was cheaper than Totsy
-LeapPad Leap book the Lost Dinosaur from Amazon.com

Wasteful Wednesday- pump bags or basins

This is my first post for Wasteful Wednesday, posts to highlight how with a child with a metabolic disorder so much of my time, money, and patience are "wasted" on the silliest of things. Also, the insurance company and the government spend a lot of their money (which then translates to the rest of us) on the mistakes and bad policies.

We get our supplies from a very large national supply company. We are pretty stuck with them because we can't get an Infinity pump and Propimex from other suppliers. We regularly get the wrong order. Last month, I placed our usual order, Polycose usually ships in its own case as does the feeding pump bags, and the rest of the supplies are put into larger shipping boxes. After Steve, our UPS guy, left, I realized that one box was not the regular size and shape of what we regularly receive and my pump bags were missing. When I checked the label, I saw that it was a case of 50 of those pink hospital basins, you know the ones you use for sponge baths and puke buckets. The supply company didn't want them back because it wasn't cost effective to return them.

So, if anyone needs 50 pink basins they are at Goodwill.

It does baffle me how a case of Zevex Infinity pump bags could be confused with a case of basins.

Needless IV lines & Oral Med Syringes

Multiple brands of needleless IV systems can accomidate oral med syringes into their hubs. With increasing use of needleless IV lines there is risk of mistakes in using oral med syringes in those lines. Here is an older article listing the problem: www.ismp.org/hazardalerts/inject.asp

Baxa Corp has several new oral med syringes that are incompatable with needleless IV lines. They also have syringes that are orange and purple to differentiate them from IV syringes.

Be aware in a hospital setting that oral med syringes (non-sterile) are not used in your child's IV line. You are their biggest advocate.

Children's Face Masks

Talli has been having to wear a mask when she goes out in public because of the risks of catching H1N1. We are almost out of the box of Kimberly-Clark Pediatric Masks and are having trouble locating more. I called a number of local pharmacies and they don't carry them at all. The vendors on Amazon.com have significantly increased their prices.

Another mom told me about It's My Heart, a non-profit for congenital heart defects. They have directions on their website to make a face mask. From reading that I have done, it is recommended that the weave of the fabric to be tight & layered and the masks are washed between uses and when they are soiled.

There is a link in my link list sewing directions.

Getting things paid for....

I am by no means an expert, however, I have learned a few things over the last 8 years.

1. Read your insurance policy or at very least your insurance certificate to see what is covered.

2. Ask for itemized bills, especially for hospitalizations.

3. Read through the bills that come. I was just sent a bill for a $30 for an appointment with a specialist. I had paid the co-pay when we were in the office. With this office, if I had paid it again I would never see the money again.

4. Know your state laws regarding coverage.
IL recently passed a bill requiring amino acid based formulas to be covered by insurance. Our insurance was denying Talli's formula. I sent in an appeal with a copy of the law and Press Release by a sponsoring organization. Usually, once a year I have to send in the same information, but it is now covered.

5. Find out why something is not being covered.
I went round and round about getting some medication covered right after Talli turned 2 years old. I was told that since she is 2 she no longer could take the name brand liquid form of the medication, she had to take a pill. This was after hours of being on the phone with various people. I informed them that she had a feeding tube and they were paying for those supplies every month. I got a big, "Ohhhhh" and "we are a different department, so don't know about tubes". Every once in a while I get a denial and then make sure the pharmacists puts in the notes that she has a tube.

6. DON'T pay that bill if you have Medicaid.
In most locals it is not legal for a medical provider to collect from a Medicaid recipient.

7. Talk to your provider if you are having trouble paying
We have negociated not paying co-pays and several thousand off a surgeon's bill by asking. Many hospitals and medical providers will work with you if you are having trouble paying. Not all doctors are like Dr. Pedro Jose Greer or Dr. Holmes Morton, but there are some out there.

8. Talk to the provider if they are having trouble getting paid
Keep the communication open with the provider, so they are getting paid in a timely manner. Bring your insurance card with you, call the insurance company to get denied claims paid. Your provider will be happy to get paid and in a timely manner.
I noted to our pediatrician when we changed insurance companies that his negociated in-network rate was a lot higher. He commented on how much he liked the plan that we had, that it paid the second highest amount, but the company paid him 30-45 days sooner than the other plan that paid him more.
Did he open up on New Year's Eve or stay open later a different day to see my sick child because he loves us oh so much or because he knows we respect him and his time? I don't know, but I like to make sure he is well paid and in a timely manner.

9. Talk to other parents
Yes, most of us meet with other special needs families and complain and compare notes. But do you ask: "How much was that x?" "What insurance do you have?" "How do you pay for all of the copays on meds and visits?"
Ask, talk, and help one another.
My husband was moved over to a contractor at his job 3 years ago and we went on COBRA. It was over 16% of his gross monthly income. I asked my good friend whose husband was unemployed. "Well, didn't you know there is this program that will pay for your family's premium if your costs are so high for a family member on Medicaid?" Ah, well no!! Our 2 case managers for other programs who had the application never told us about it. We applied and.... they paid our premiums back to the application date. I send in proof of payment and EOBs and we get reimbursed with a check sent via certified mail.

10. Search out organization there to help
Does your disease organization help with bills?
Ask your disease organization if they know of local or national resources specific to your disorder.
Is there a local support group meeting?
Find out if your child qualifies for mandated programs like Early Intervention.
Support and utilize groups like http://www.themorganproject.org/
Take advantage of conferences supported by disease organizations, EI and other groups. Here in IL, StarNet and the ARC will help to pay for travel expenses for conferences and often hold free meetings as well.

11. Contact the manufacturer
Whether it is a DME manufacturer or a drug company, many have programs to help those in need. For those with Propionic Acidemia, most are on specialized formula for life. Most of the manufacturers have programs to help those who can not afford treatment. The same goes for drug companies, whether it is an orphan drug like Carnitor, or a major drug company processing IVIG, they will help those needing treatment. When our feeding pump breaks (I have 9 pumps in Talli's room, one of which is working), I contact the DME provider, but also my local sales rep. Oh, Patrick, such a wonderful man, who will overnight me a pump that works; he sends a nice Christmas card as well.

12. Talk to the discharge planner & social worker at the hospital
Everytime you are at the hospital talk to them. Let them know your needs. Unfortunately, once you are discharged you are often forgotten, but they may have resources that you do not know of.

13. Just shop around
Yes, I have gotten supplies on both ebay & amazon. My first feeding pump purchase on ebay was fully reimbursed by our health insurance company. $161 vs $2500, someone actually did the math and realized the deal. This insurer highly suggested people shop around and negociate. Dh also happened to work for the company and I was on the phone with the claims rep almost daily, but I don't think that swayed the decision as they also denied plenty of claims. Even if they didn't reimburse me, 20% coinsurance on $2500 = $500, so super good deal for me either way. My last pump purchase was $37.50, including shipping.

Don't do things that are illegal. I have paid for compounded Rxs that would have been a lot cheaper if I got them from Canada.

14. Use the supplies at the hospital
Don't use your own stock, use what the hospital has. If they do not have a needed supply talk with them about getting it. I have had charge nurses send people out to get Pampers because Talli couldn't use Huggies.

15. Know your costs
Know what your co-pays are, your co-insurance, Max out-of-pocket, etc.
My insurer has a nice tool regarding Rxs on their website. I can find out the drug costs on all of our family's medications if I pick them up at Pharmacy X or get them mail order. It also states the limit on the number of doses for the Rx. So, I learned that it is cheaper for us to get 3+ medications a month from Dominicks' ($4/month) or Target's ($4/month or $10/3 months)discount drug programs than have them billed through my insurance.

16. Know your pharmacist
I love our pharmacy! I can bike to it when the weather is good. The pharmacy tech knows who I am and gathers all of the family's medications when he sees me coming. A few weeks ago he didn't grab one for one the boys, but he rarely gets an Rx. If insurance is denying something, they will usually give me the Rx or at least a week's worth to hold us over until things are straightened out. If something is not in stock they will ask me if 1. I can wait a day or two to get it in 2. if I want it transfered to a different pharmacy AND they will call to see if it is stock there 3. they will call the pharmacy down the street and if it is in, the pharmacy tech will go get a supply to then fill my Rx.
Really, I just love them!
This saves us how?? If we are not skipping meds because they are being denied for some reason or they are not in stock won't our overall health costs go down.

A friend's pharmacist calls her every month to come pick up her supply. I haven't been able to get it so that all of the medications are refillable on the same day.

Being Organized #1- Care Notebook

I typically function with organized piles on my desk, in my laundry room, on my dresser, etc. However, in the first half of 2007 Talli spent a lot of time in the hospital with various types of sepsis, septic arthritis, and port change outs that I decided to put the time sitting in her room every day to good use. I put together her "Care Notebook".

This has been a life saver, time saver, and very much worth the 15 or so pounds it weighs to take to each appointment and hospitalization. It helps to keep me focused at appointments, especially if I have all of my kids with me. I think it adds credibility to me as a parent because I can give specifics to a physician on her history, labs, and medications; when I can give them a list that they can copy for her chart.

A fellow board member at the Propionic Acidemia Foundation put together the basic structure for the one I use, however, I add and take away as seems appropriate.

I recently took out all discharge paperwork out of the notebook. They just took up too much space and didn't really convey any information that I didn't have somewhere else. Also, the specifics of what medications were given at what time the day of discharge doesn't add anything to her overall health plans 6 months later. I tossed what I didn't need, the rest got filed.

It is a 3" D-ring notebook. I have two sets of write-on divider tabs (we need that many!). A velcro pocket folder holds prescriptions given to us at appointments or small notes. A business card holder keeps the cards from her various specialists. I used to keep a small 3-ring hole punch in there, but I really needed the space, the same goes for a pencil/pen case. A CD holder keeps digital medical files, which are mainly x-rays and other radiological studies.

I have smaller versions of the Care Notebook for all of my kids and myself. My husband has excellent health and sees a doctor for an annual physical because I make him. Other than that, he usually has some sort of major accident every 7-10 years, but since he has no underlying conditions we don't need to tote any records to the hospital with us.

When we goto appointments I carry Talli's Care Notebook in a canvas bag. When she is going to the hospital it goes in our hospital bag, which I will write about at another time.

Sections of Care Notebook:
-About Me Emergency Contact information; Emergency Information Form for Children with Special Needs; general information about likes, pets, foods, bedtime, etc. (think along the lines of someone stepping into your role and needing to know that your child will throw up ANY mixed texture food); Birth & Early Development; Diagnosis history, Medic Alert Record Summary, Medications (I use Post-it flags for each current med);

-Labs & Tests I am phasing out this section. I put labs in chronological order by type, so all CBCs were together, etc. However, for the most part it is a specific physician ordering a specific test, so I am now putting them in the sections for each specialty. The medical records prints labs for 2 different specialties on the same page, I copy it, so each lab can be in the proper section.

-Hospitalizations (This section is never up to date) It lists the dates of admission, name of hospital, address, doctor's names, reason, and outcome. Talli has had over 100 hospitalizations if you count outpatient visits, which is why it is not up to date.

-Contacts Health Insurance information, including a copy of each card. I keep expired cards as well, as billing can sometimes be delayed more than 12 months. Hospitals we use; the business card holder with provider information AND device information. For each implanted device she has had we have had an ID card with information regarding placement and model/serial #s.

-Supplies A descriptions of each supply ordered; company ordered through; reason needed; comments; prescribing doctor; and contact person at insurance if prior approval is needed.

-Nursing/Home Health Contact information for all companies; services performed; frequency; notes; and a phone log.

-Specialist subsections This is the reason we need 2 sets of divider tabs. Genetics; Nutrition; Pediatrician; Cardiology/Electrophysiology; Gastroenterology; Hematology; Allergy/Immunology; Endocrine; Orthopedics; ENT.

For each subsection I have the following: Contact information for the office & nurse; Phone log; Clinic Visit notes (these are my notes for each appointment); letters written by doctor to school, for ER visits, for travel, etc.; labs specific to that specialty.

-Medical Assistance/Case Management Programs We have case management through a state program for her metabolic disorder, so I have contact info and a phone log for that. I also have a section for the Case Management at our Primary Insurance company.

-Infusion Log A record of all Intravenous Immune Globulin infusions that she has received.

-Glossary/Reference Information This is VERY useful. It lists medical terms specific to her metabolic disorder, how to calculate things like Anion Gap, which may not be calculated on a lab sheet, Blood pressure reference chart by age & height; growth charts (If she didn't have growth concerns because of other medical conditions, I would have this in my pediatrician section, but since GI, allergy, endrocine, and genetics all care I keep it here).

-Forms extra forms for the Notebook, like phone logs and clinic visit sheets. I also keep school medication forms in case she is prescribed a medication that her nurse will have to give her at school.

I keep all of the Care Notebooks in a cabinet in my family room. The person who would take care of my kids in the short term if something ever happened to us knows where the Notebooks are kept.

I hope to post links to Care Notebooks and photos this next week.