Long overdue Eli update

Eli has had a rough few weeks lately. I have noticed that the older he gets, the more desensitized we become to his problems. It just becomes so much of our everyday life, it no longer requires special attention or a dedicated blog post. But I figured I would update the world on Eli.

Eli has been throwing up for almost everyday now for over a month. I know with most kids you would be in the ER by now, but with Eli it’s just different. We do consult his doctors, but since Eli does not exhibit any other symptoms (like a fever, diarrhea, chills) the doctors are just left guessing. While they are guessing, I would rather carry on with our normal life and not be stuck in the hospital. Most of the vomiting revolves around seizures so there is no controlling that.

On Tuesday morning he threw up blood which looked like coffee grounds. He has done this before, so I called the doctors and am now giving him Carafet (which coats his stomach to help heal whatever was bleeding). If he continues to vomit blood, they will want to examine him. I presume an endoscope would be in order for that.

Also, Eli’s left leg is now crossed all the time. We noticed this slightly a few months ago but did not know why he was doing it. Well after fighting tooth and nail to get an Orthopedic appointment, we finally got it. Several of his doctors have left their private practices and joined the hospital's practice. Now you can never get a person on the phone and if the system lets you leave a voice mail, they rarely call you back. It's a mess. After an x-ray they discovered that his left hip is completely dislocated and the right one is halfway out.

Since the hip is dislocated, it also makes his pelvis tilt which is causing his spine to curve even more which is a whole different concern. So, with the hip dislocated we are presented with three options.

Option #1: Open Reduction Femoral and Dega (Pelvic) Osteotmy (this entails cutting the muscles and reshaping the pelvic joint from a “U” shape to more of a “C” shape and forcing the hip back into joint and hoping that it stays in).

Option #2: Proximal Femoral Resection with Femoral Shortening (they would cut off the top of his leg bone; the joint part. This would let his leg “hang” straight and thus straighten his pelvis and spine too).

Option #3: Do nothing for now (self explanatory).

Since Eli does not seem to be in pain, for now we are opting for #3. I have read about #1 and it is a very big and painful surgery and can cause life long pain. #2 is still an option, but only if the dislocation causes him pain and maybe when he is older.

Eli also has new hand splints. They are to help align his wrist by keep his pinkie from falling down toward his wrist and also help keep his thumb and fingers extended. Otherwise, he always has them in a fist.

He also has soft Benkin had splints too. He wears them for the same reason, but they allow him to more easily interact with objects by touching/feeling them.

He also got new AFO’s, which are the same as before, but just larger. These keep his feet flat and help him with his pointed toe problem.

Lastly, we are working on getting a custom fitted wheelchair for him. We got the one he is in now used and it was not “custom made made for him”. So, this new wheelchair would be sooo good for him. If only I can get it worked out (that’s a whole blog all in of itself, not just a post).

P.S. He is also sooooooooooooo heavy now too! It is getting very hard for me to carry him around a lot now. He is up to about 34 lbs.

Helper

He just wants to help!!

Insurance Bills

This post is kind of a rant, but also a "Thank God we have insurance" post as well.

With all this talk about insurance reform, I figured I would give my two cents. Really, I would like to give my million dollars worth of opinions, but none of us have the time for that. So, I will settle with two cents. Also, less people will be offended this way.

I whole heartily believe we NEED insurance reform. I however DO NOT believe the current proposal will help.

I want to share with you one of the problems I see and wish the government would tackle it first as I believe it would help solve some (not all) of the problems.

The first insurance bill I will share with you is from my insurance provider. BCBS of Florida. This bill shows what our home health care company billed them for a small plastic button for Eli's feeding tube. I have included a picture of it too.
Okay can you see that? If I had no insurance, Apria Healthcare would have charged me $793.00 for this little plastic piece. Obviously, this piece does NOT cost that much to make because BCBS has negotiated a price of $38.22 for it. And, we all know, that means they are still making a profit off of it as they surely aren't in the business of giving things away.

So, why can't I buy the tube directly from the manufacturer? Or, why if I choose not to have health insurance would/could Apria not sell it to me for $38.22. I mean, going from $793.00 to $38.22 is a HUGE difference. Why is the world is it okay for them to mark up their prices like that, but it is not okay for other companies to do it? For example, insurance companies and utility companies have to seek government approval before they can raise their rates. We are not talking about an optional accessory here, this is a medically necessary item that he has to have.

This next bill is similar, but shows Eli's prescription medications. I have always heard about these prescription debates, but never really understood because I could always take generic for things like ear infections, ect. However, with Eli most of the medications he needs don't have an alternative. Again, these medications are not like "oh lets try it, as it might make the color of his skin prettier". We are talking about seizure medications here.

Below is a bill that Walgreens has submitted for his monthly prescriptions. I have starred the medications he takes on a monthly basis. These are only the "must haves" that he takes every month. He also has a list of "as needed" medications, but we'll leaving those out of this discussion. So, the starred medications are what he has to have everyday. 4 of them are seizure medications, 1 is for muscle spasms, 1 is for secretions, and 1 is for reflux.


This shows that if we did not have insurance, Eli's monthly medications alone (again, none of the "as needed" ones) would cost us $1137.14!!!!!!! A month!!!!!!!

Now again, remember the first bill. The insurance company pays nowhere near the amount billed. I guess I just don't understand the providers way of working. Why do they "charge" a company, knowing full well they never get that amount. I keep hearing that it's the uninsured and their unpaid bills that are ruining the system. Well, if you are charging people who are already in a hard spot $12,000.00 for a $450.00 item, that's going to put a tremendous amount of strain on them. A bill of $12,000 would seem overwhelming, but a $450 bill, even though it would not be nice, would be much more attainable. I would assume that the average person would be willing to attempt repaying the $450 bill in 12 payments of $37.50 per month. But I think it is much more likely that the same person would be overwhelmed and just not even attempt a payment plan of $1000 a month. Which one makes more financial sense for the provider?

I also find it interesting that the order our doctor has added his seizure medication to his regiment is exactly in order of their cost. 1st Phenobarbital $1.96, 2nd Clonazepam $22.05, 3rd Keppra $198.04 and then lastly Lamictal $662.02. Is that a coincidence? I don't know. I think it is more to do with the fact that the cheaper medicines have been around longer and doctors know more about them and how they work, regardless of price. But with Eli, the older ones aren't working so they add the newer ones in hopes that it will work for him.

So, my observation is that the home healthcare companies and the pharmacies are causing a lot of these problems. Let's start there and begin to fix the problems that we have, instead of starting from scratch and throwing away everything that is good about current health insurance. Just think, if we lived somewhere where Eli would have gone onto a waiting list to receive care, he might not have ever made it to the doctors who saved his life.