Oh The Tangled Web

Elias had an echo done today for his heart. It appears as though the VSD is closing because it is not as apparent on the images. Hopefully this will continue to close and no surgery required. We will continue to see the cardiologist outpatient. This had sort of been swept under the rug, and not really focused on that is why this is seeming to come out of the blue. No other changes for Elias right now.

To pick up where we left off last night I told everyone we would try to sort out the tangled web for the journey home. Sometimes written word's context can become misunderstood so let me clear the air just a bit. We are not really blaming any particular group having to do with Elias and his pending status. We are certainly pointing out the inconsistencies that this wonderful system and all it's supporting constituents seem to have. Not to mention the continuous paradox that causes them to go back and forth. This is just one example of millions that adequately shows that while every entity is simply doing their job and nothing wrong, the system is obviously set up to encounter sabotage without even trying. So here is what we have and where we stand:

• Elias is near being medically ready to come home. So what is keeping him from coming home?

1. We, the parents, have to go through training to ensure we are comfortable with Elias' required care particularly the tracheostomy. This will take a few weeks minimally and we have to show proficiency.
2. Elias must have Private Duty Nursing at home. It must be a minimum of 8 hours so that we can sleep, because Elias requires 24 hour awake and alert care with the tracheostomy. He cannot be discharged home until this is in place.

• What does the Health Insurance cover?

1. Right now it is doing a wonderful job paying for Elias in the NICU and will do so if and when he has to go to the transitional hospital. Considering the astronomical cost of Elias' care thus far, we are fortunate with what our out of pocket has been.
2. At some point the insurance will not approve Elias medical status as needing and Intensive Care Setting. This is where the transitional hospitals come in. That is where the downgraded care is given to satisfy the insurance.
3. The policy does not cover any Private Duty Nursing. Since Elias must have this before being discharged home, we need an alternate way to get coverage. This where the model waiver program comes into the picture. The insurance company simply needs to provide written documentation confirming the non-coverage.

• What are the Doctors doing and can't they help?

1. The doctors are doing everything they can to get Elias ready to go home. They do not have the luxury to influence decisions on when and how with the insurance. They are simply trying to get him ready for the next step. If he isn't ready to go home or stable enough to be transferred then none of this would actually be an issue right now.
2. There does seem to be a little confusion about Elias going home or to the transitional hospital. It depends on who you speak to about this. Some doctors feel that as long as the private duty nursing is in place he can go straight home. Others feel that the transitional hospital would be beneficial for a short time. There really has been no formal discussion among the medical team to reach that consensus. What we are getting from them now is opinions. We should have an update on what was discussed during discharge rounds a little later today.

• How does the Model Waiver Program fit in?

1. This is a last resort opportunity for children to come home who would otherwise be hospitalized long term.
2. Since our insurance does not provide the Private Duty nursing, we are now eligible to get on the list.
3. This non-profit agency works with the state medicaid system to secure benefits as a secondary insurance, covering what the primary will not. There are only so many spots available and currently the program is full. There are several potential spots opening up in the next few months. How high on the priority list we are depends on our needs versus others on the list. Elias has a high priority need since he must remain hospitalized with out this.
4. Once we are active on the program we can then work on setting up the Private Duty Nursing. Unfortunately we cannot begin that part any sooner. Once that is set-up, Elias may be discharged home once we are able to show proficiency with his tracheostomy care.

As you can see there is a lot of carts and horses and sometimes the cart has to come before the horse. It is certainly a unique way to have to accomplish a simple goal. Our biggest issue at the moment is that Elias will spend unnecessary time in a hospital simply waiting for us to become active on the waiver program and the time is takes to interview and select the Nursing Agency. In a way we wonder why this process was not started sooner. Considering there are no open spots on the waiver program currently, means we would likely be in the same position regardless. I think the hardest part here is that we worked so hard to get to this goal, thinking it was the end of one journey and the beginning of another, only to find out that it was a mirage and we still have many miles left to travel. It is a huge disappointment and a slightly discouraging. We don't want to say the system has failed us, because it hasn't. We simply do not understand why the system has to be so complicated and often times counterproductive. The biggest problem is programs like SSI/Medicaid should not be so difficult to obtain. It should be cut and dry on who is and who is not eligible. The problem is there is so much grey area and interpretation that they end up having to scrutinize everyone. If these programs were more accessible then other programs like the model waiver program would not have to exist. The do because it protects those that get swept by the system. We just cannot fathom the bureaucracy and red tape that we have to face. It might be possible that we now look at things more simplistically. We have been forced to make an intolerable situation one that we will cherish for the rest of our lives. We understand that things will not be easier once he is home. We know that we will not have more time. We know our lives are going to be much different. Regardless of all this we just really want one thing, to have Elias home.