Thursday, September 29, 2011

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.

Thursday, September 22, 2011

School staffing meetings

The staff at Talli's school has a meeting each week to discuss how things are going with her, any problems, and any coordination that needs to happen. The meeting lasts 30-60 minutes and is lead by the Resource teacher. Here are those typically in attendance:
Resource Teacher
Classroom Teacher
School Nurse
1:1 Nurse
Speech Therapist
Occupational Therapist
School Social Worker
Sometimes the principal or district staff will attend as well.

If there is a major concern they ask me to come and meet with them, although I am welcome to come anytime. This afternoon is the meeting and I have been asked to come. There is no issues on their end. This does give me a chance to ask any questions that I have.
There are only 3 things that are pressing on me to discuss.
1. On a geography test on the continents and oceans, Talli got all of the continents correct, but didn't put anything down for the oceans. Did she run out of time? Did she get frustrated and give up?

2. Talli has been coming home with flashcards with her spelling words for the week, which is really helpful. This week she came home with ones she made herself. The problem is that her handwriting is so poor (hence, the reason she sees the OT) that in looking at them she couldn't tell whether a letter was a 'c' or an 'l'.

3. I feel like Talli is being asked to be more independent before she has the skills to do something herself. Currently, she has a fairly nasty yeast infection and having a wet bottom is contributing (she hasn't been on any antibiotics for a while). She usually is in a rush to goto the bathroom because she doesn't want to miss whatever is going on and she will either forget to wipe or she will get her pants wet in the process.

Wednesday, September 21, 2011

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!"

Friday, September 16, 2011

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 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
- socks for M, just to use a discount at
- 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 (they are elaborate and NOT for little kids)
- Dracula: A Classic Pop-Up Tale from, as it was cheaper than Totsy
-LeapPad Leap book the Lost Dinosaur from

Wednesday, September 14, 2011

Wasteful Wednesday- FINAL DEMAND

I was planning on writing today about the 3 appointments scheduled back to back on Monday (the doctor's office scheduled testing and then to see the doctor right afterwards) that lasted almost 4 hours instead of the planned 90 minutes. However, when I got home today from two more back to back appointments for Talli I saw a letter in the mail from the hospital. A couple of weeks ago I wrote about the ongoing saga of the hospital billing department.
Today, the letter stated it was a "FINAL DEMAND" (caps and bold are theirs) on a bill for 3/11/2011. "We have been unsuccessful in our attempts to reach you and discuss your balance." Hmmm, the letter is dated 9/6/2011 and the only time I have gone without a working cell phone (my home phone rings to my cell phone) is the past 2 hours when I somehow lost the back of the phone and the battery and September 7th when I my cell phone fell out of my pocket and into the toilet, however, my voicemail is working just fine.
It goes on to say how they are sending me to collection if the balance of $3,806.25 is not paid within 10 days. Wow! Isn't that two days from now!
So much for the head of billing who is actually a hospital employee rather than a contractor fixing everything for me.
I will be calling the patient advocate office again.
I sometimes wonder when I get to parent vs. running around in circles.

Thursday, September 8, 2011

Wasteful Wednesday- Food (a day late)

Sorry, I am a day late on this one.

One of the big parts of PA is the lack of interest in food and for us food jags.

Talli will go for weeks with only eating a few bites of food a day. She does always have a lunch packed for school and there is at least one dish she can have at dinner with the family. A couple of times a month, she will also choose what we are eating as a family. However, she will have food jags that are more like binges and want to eat a particular food.

It could be a whole box of Betty Crocker Fruit Snacks in one day (.8g protein and 800 kcals). That is easy to accommodate, since I can just run to the store and if she loses interest I can give them to the boys as a treat. When it is specialty low-protein foods; it can get expensive and a lot of food can be tossed if I overestimate the length of the food jag.

She has had food jags with Ener-g pretzels (~ $2.00 for a 2.65oz bag or about 8 times the cost of Rold Gold pretzels) and I overbought, several bags went bad. Also, with Energy Options candy bars where she was eating more than a bar per day ($2.94 for a 50g bar, the size of a Hershey bar) I ordered enough for 2 weeks and reorganized the pantry and misplaced them, although, it didn’t matter because she stopped eating them. I don’t think the Energy Options bars will be tossed in the future as my boys think they are great treats when they snatch some (blehhhhh!!).

It would be nice to have a local network of families to buy or swap with. OR IF food was covered we could go "shopping" at clinic and take what we need instead of trying to plan ahead and wait for it to ship. I guess insurance would need to recognize that medical foods are just as needed as formulas-- oh, wait! some don't even see the need for formula.