Formula update

Praising God that Elijah's formula and formula bags did come as the DME company said. Thanks for all the prayers. This may be a monthly prayer request.

Why does it have to be this hard?

This is a prayer request and a long story to explain why this is a prayer request.

I feel like every month it is such a battle to get Elijah's formula. The DME company always says it is Medicaid and Medicaid will say it is the DME's fault. I really don't care who's fault it is, just send my child's formula BEFORE he runs out.

Back in April I was going through this battle and the DME company said they were waiting on the doctor's office. They said they faxed the papers to the doctor. Just so happen I was on my way to the doctor's office. Once I was at the doctor's office I asked about it and they said there was not a fax. The doctor got so mad, so we called the DME right there in the patient room on my cell phone.

They sent the fax to the office, but said it would be 6 weeks before approval and formula was sent. I went crazy on them and they finally agreed to send some formula.

Then at the end of May the DME company gave me the same run a round saying they haven't recieved approval. I called back and forth between Medicaid and the DME all day trying to figure out what was going on. Turns out the DME just sent in the paper work a few days before again saying it would be six weeks to get approval. I was fit to be tied! What had they done between April 9 and May 20?

I get so crazy mad at these people, this is my child's life they are playing with. I finally talked to someone at the DME and told them if formula wasn't delivered to my house the next day I was calling the newspaper and TV stations and see about getting a story on how they won't send a tube fed child's formula. Why do I have to say such crazy things like that to get action?
Formula did arrive the next day.

I waited a few days and called them back and asked if I should go a head and get start working on getting June's formula. They assured me it would come. Here we are, June 17 and no formula yet!

I called them today and left a message. Tomorrow I will be on the phone all day trying to get formula. Please pray this maddness stops soon. Elijah is tube fed, he needs to be fed every day, all month long and again the next month, so why doesn't his formula come at the same time every month?

Thank you for taking the time to pray.

Fanny Packs

Yes, they still make fanny packs. I had no idea. I told someone I hadn't seen a fanny pack in a store in years.

We went to Academy Sports yesterday and they have fanny packs. They have a lot of different styles. Thankfully they had the perfect size for Elijah's pump and formula bag.

They were only $5.83. Thank you Jesus!
We got 4 in red, navy, green and black.

Thank you Tara for telling me to check at Academy.

Update on Pump

Sorry I didn't update on Thursday or Friday.

Thursday morning a guy called from the DME and said the pump and bags were in. I told him I'd come pick them up.

When I got there I learned they only ordered 5 bag sets for the pump. I didn't know whether to laugh or cry. The bag sets are good for 24 hours, then you throw the bag away to prevent bacteria growth. I kept thinking we are good for 5 days.

I did have the guy to call and check that more bags were coming. He said they were, but didn't know when they would be in. I'll feel a lot better when I have a case of bags sitting in my house.

I'd like to ask everyone to please pray for this DME company. They are nation wide so I know they service a lot of people who need supplies from them. I know all the patients need their supplies to be delivered on time, before they run out, just as we do. I pray this company can have the employees that they need and be able to handle their orders so that none of their patients suffer.

The Infinity pump is so small. It is 5.65" x 4.05". This would fit nicely into a fanny pack.
Oh we did get a small backpack for the pump. The backpacks get so hot on Elijah's back, especially in the summer and this backpack is black so it would really be hot. Elijah wants a fanny pack. I called Zevex and talked to them and even got a discount, but they still want $50 for a fanny pack. Today we are going to Academy Sports to see if we can find a fanny pack at a better price. I pray we find one for him. I found some online, but I'm unsure about them. They look an odd shape, smaller at the bottom, so I'm not sure the pump and bag set would fit. I'd like to find one that shape in a store to look at and if it would work, I could order different colors online.

You know if it's not one thing going on it's another. Now it seems Elijah has a bit of infection around his feeding button. It smells bad. It has never smelled this way before and that's how I found the infection. We have been really lucky with his stoma all these years. In 6 years I can only think of one other time he has had an infection. I'm also thinking his button is to small and he needs a longer button. The small button has rubbed raw places on his belly under the button so I'm sure it's doing the same thing on the inside of his stomach. Two years ago he was having a lot of pain around his button so we took him to his GI doctor in Cincinnati Ohio. He said his button was to small and rubbed the inside lining of his stomach raw. Once his button was changed to a bigger size it was fine, so I feel that is what needs to be done now.

Thanks for all your prayers!

Please continue to pray:
*Bag sets arrive soon.
*Supplies will come monthly without hassle.
*We find a fanny pack at a good price.
*This DME company can supply all their patients needs on time without fail.
* We get a bigger size button soon and the infection heals up quickly.

This is CRAZY!

The man from the DME company called and said the pump was in, but they didn't order any formula feeding bags to go with the pump.

I bit my tounge and only asked when the feeding bags would be in. He said he was going to check and see if it was too late in the day to have em overnighted. I kept my cool and told him to please check on it.

SO hopefully tomorrow we will get the pump and feeding bags.

No pump yet....

The formula did arrive this morning.
7 cases of the powder Neocate One + and 4 flats of EO28 Splash.
Elijah was so happy to see the EO28. He's been completely out of that formula for several weeks.
He grabbed one and drank it down right away.

The Neocate One + and EO28 is the nastiest tasting and smelling stuff you can imagine.
SHHHH don't tell Elijah the EO28 is nasty and stinks.

The pump did not come. The man from the DME called me a little after 3 PM to say it didn't come, but he expects it tomorrow.

I'm praying the pump does come tomorrow so Elijah will be able to attend co-op on Thursday.
He'll need to be hooked up to a pump getting formula to be able to go to co-op. He can't go that long without formula, his blood sugar would drop and he would get very sick.
The kicker is I teach way too many classes at co-op to just keep missing. Jody also teaches 2 classes at co-op. So we need Elijah to be able to go with us.

Thank you so much for the prayers!

God never fails us!

Prayers have been answered!!!

It was a long drawn out morning with lots of crying and yelling.
I doubt anyone wants to read all the details of how I had to get ugly.
But if you do want more details you can keep reading.

I'm updating this as things happen.


The battle started a little after 9am.
I've talked rationally, I've cried, I've yelled. I have a headache now.

I've done all I can do and I've talked to everyone that I can, now it is up to each person that I have talked with to submit the right papers and forms with the correct wording explaining why Elijah needs this certain pump.

Elijah's case worker really hurt the case by calling the DME company and spouting off how Medicaid's not going to pay. Then I talked to her and she doesn't even have a contact number for Medicaid. No one from Medicaid told her that, she just wanted to spout off. I told her I want the name and number of the person who told her they wouldn't pay and she can't give me anyone. I called her supervisor about it too and told her to assign us a new case manager now because this one won't be coming back to my house. I'm not normally this ugly acting, but I need someone to help us not hurt us.

I know this will be a long drawn out process. Everything through medicaid is.

Anyway please pray we get this taken care of ASAP. One man told me today that it could take him 25 days to get an answer from medicaid.

I think if I could get the message of "we need a nurse until we get this pump" to the right person things could be sped up.

New update:

I talked with a man from the Zevex company and he said Medicaid pays for the Zevex Infinity pump everyday.

He gave me the name of some other DME companies that have this pump on the shelf and has gotten Medicaid to pay for them for patients.

So I called the office manager of the DME company we are trying to go through and told him we should probably go through a different company. Told him what I had learned. He said he was going to make some phone calls and call me back.

Now I don't know if the DME or Medicaid is the problem....probably both.

New update:

The Enteral department of the DME just told me they are going to over night a pump to our town tomorrow and someone will deliver it to us.

Thank you Jesus for knowing Elijah's needs and providing!!!

New update:

The DME office manager just called me back, LOL, he didn't know the Enteral department had already talked to me so he goes on telling me it looks like we'll have to keep the pump we have.
Medicaid's not going to approve it no matter what DME we go through.
I told him I've been told the new pump will be here tomorrow.
He said okay, he didn't know there was a change and we hung up.

He called me right back and said Medicaid isn't going to pay for the waist pack. I told him I believe medicaid would rather pay for a $100 waist pack then to pay for daily nursing care, but it's their choice which one they want to pay for. He said he'd see what he could do.

You know I'm just a home school mom, what do I know, but paying for the waist pack seems so much cheaper to me.

Then the nurse from Elijah's doctor's office called me back (I had left her a message this morning). I told her I think I have it settled now, but filled her in on everything that happened.
She said she'd write that script for nursing care if I need it to help speed things up.

I hope it is all taken care of now.

Please keep praying until we have the Infinity pump here at our home hooked up to Elijah feeding him formula. And a waist pack so he can hook up and be on the go!

OH and we haven't gotten that shipment of formula yet that we were to receive today.
It's coming UPS so there's no way of knowing when to expect it, but it is to come today.
Elijah is out of formula waiting on it to arrive.

Thank you for all the prayers over the pump problems.

Our God is a Mighty God and there is nothing he can't do.

Prayer needed for medical items!

Will you please join us in prayer for insurance to meet Elijah's medical needs.

Elijah has medicaid and medicaid doesn't want to pay for anything.

Elijah has been tube fed since he was 2 years old and we have went through a lot of big bulky pumps that have to remain plugged into a wall outlet for feedings. These pumps were not portable. At one time he was able to get a pump that was supposed to be portable, but it alarmed so much when we'd leave the house it was worthless.

Finally at one time we had Blue Cross Ins. and were able to get a Zevex pump (pictured below).

We loved it, great portable pump! Elijah was able to wear it in a small backpack made for this pump and it worked great. We had this pump and backpack for 5 years. The backpack tore up long ago, but we have still managed to use it. With the inside of the bag being tore up it made the pump alarm more then it should because the bag of formula wouldn't stay in place.

Now the pump has died.

It is a long drawn out process trying to get a new pump. Of course Medicaid doesn't want to supply him a new pump, not to even mention the backpack so he can be mobile. I've went over and over all this with medicaid and they either don't care or don't understand.

Elijah's doctor has wrote prescriptions explaining why Elijah needs a certain pump.

Elijah is an 8 year old active boy who needs to be on the go and able to do things. I can't imagine him having to be on the couch 10 or more hours a day getting feedings.

Friday Medicaid supplied us with a pump that will not fit in a backpack so as of right now Elijah is stuck at home dragging an IV pole around with him.

For 2 weeks now I've been on the phone daily, most days all day long with medicaid and DME companies trying to find one to accept what Medicaid pays and be able to supply the pump we need, formula, formula bags, extension tubes, syringes and his feeding button.

Each day watching our formula supply go down. I tried to explain that we were running out of formula. Thursday we were down to enough formula to last that evening. I finally got them to understand he couldn't go 4 days without food so they overnight us 1 box of formula to last us the weekend.

Imagine my surprise when I opened it Friday and found that the formula is now in new smaller single serving packets so it's still not enough to last the weekend, but we are trying to make due with smaller feedings. We are supposed to get more formula delivered Monday.

Monday I will begin the battle again for a portable pump.

I guess I will tell Medicaid that if they can't supply him with a portable pump, then they can pay for nursing care since he will be home bound with the pump they supply.

I hate even having to depend on Medicaid, but I have no other choice. His formula alone is $120.00 every 2 1/2 days. That's not even for his bags, tubes, button, syringes, daily meds and other medical needs. It's a shame these companies charge so much for medical supplies.

This is the pump that we had for 5 years. We would be happy to end up with this pump again.

This is the pump we really want. It is smaller then the pump above and will fit in a backpack or a waist pack. This pump is the new and improved pump by Zevex and has less alarms and such. Kids can truly be active with this pump. I'm told they can hang upside down on monkey bars and this pump will still work.

This is like the backpack either pump can fit in. These backpacks are special made with places to attach the bag of formula and a place that holds the pump. Can you believe they charge over $100 for these backpacks? We would be happy to get a new backpack, although Elijah does not want red.

This is the waist pack that Elijah really wants. He is at the age where he is embarrassed about his pump and doesn't want other kids to see it. If he had the waist pack maybe his shirt could cover up the pack. He would be so thrilled if they approved to pay for this, but again these are even over $100. We would actually like to get a backpack and a waist pack to be able to change up, but we'll be doing great to just get one.

Our prayer request are;

1. Formula and supplies will arrive Monday. I can figure out the new packages and how much more formula he will need to last a month and they approve the new figure.

2. Medicaid will approve the Infinity pump, waist pack and backpack or at least the pump and waist pack.

3. If they won't approve the Infinity pump, we need them to at least approve with EnteraLite pump. Elijah needs to be mobile!

Thanks you so much for joining us in prayer for these needs to be met. God has been so good to us and I know he can handle these needs.

Here is what the Zevex company has to say about the Infinity pump. Doesn't this sound great for an 8 year old active boy!

Small, highly accurate and truly portable, the EnteraLite Infinity allows tube fed patients the ability to participate in physical activity, without being held back by their feeding pumps.
Surpassing all other enteral pumps, the EnteraLite Infinity provides active freedom. Use of an enteral feeding pump no longer needs to be a major limitation to the user’s daily schedule.
Designed for both hospital and alternate care use the EnteraLite Infinity’s size, weight, accuracy, and portability promote and support physical activity. Enteral nutrition consumers can now gain the benefits from health-improving physical activity by utilizing new technology that supports active freedom.