Hi Everyone,

Last week was one of the toughest weeks we’ve had in awhile. It seemed as if everything we’ve been fighting for completely fell through. We are now trying to rebuild our strength to start over.

The therapy company that is a part of our team will be discharging Corey on May 18th. We are told that they will not discuss an appeal. They are licensed as a Medicare company not a Medicaid company. In addition, they service short term cases not long term cases. Bottom line, Corey’s case does not generate the revenue they receive from Medicare cases. I am working diligently to qualify their decision before I accept this to be true.

If we have no recourse, Corey is not strong enough to tolerate out patient therapy at this time. She will eventually get to that point but her stamina is not there yet. We are struggling to find another agency that provides long-term, homebound therapy (which is why BC found our current company). Our current company is also suggesting we speak to Bryn Mawr Rehab to ask Dr. Long to readmit Corey for short term stay that would include Botox shots and serial casting. This is not an uncommon request. Corey’s bilateral range of motion in her ankles has increased a bit, but is not where is should be. It is a common practice to cast. It is also a less invasive step than surgically lengthening the tendons. If Dr. Long advocates for us, if BC will approve the request and BMRH accepts Corey, the short term stay along with casting and intense therapy may help Corey’s ability to advance her walking. In-patient therapy will help aide in Corey gaining strength, stamina and function.

There is always good and bad for each step of this process. If Corey is accepted, that would happen just as our home therapy runs out. It also opens her case for a new therapy company when her stay is concluded. She might even be ready for out-patient

Now for the bad news, readmitting Corey to the hospital closes our home skilled nursing agreement. Anytime a patient is readmitted, you start from square one. We will lose the nursing hours we fought so hard to get. Last week I found out we may lose them anyway. With the chronic call outs, our hours have not been meeting the volume approved. The audit will show hundreds of hours not used (not our fault) but the consequence will be that the Waiver will deny our continued approval. If you don’t use them…you lose them!

So now what? This weekend was used to “unplug”, step back and regroup. The first step is to disconnect emotionally from the situation. Anger, resentment, fear and exhaustion will not help us think clearly. Not surprising, the stress and fatigue of this past week has accelerated a cold that hit me like a freight train. I’m attempting to “will” it away with mind over matter…my mantra has been ~ I’m not sick, I’m not sick.

The plan for this week is to get our options defined. Therapy; In-patient vs. Out-patient. BMRH; pro’s and con’s to readmit Corey; alternatives to the latter. Skilled Nursing; some interviews have been scheduled for this week to share our case with our current agency if we are not readmitted. Perhaps 100% coverage can be met with multiple agencies? Investigate the procedural steps to closing the case vs. suspending the case if re-admittance to the hospital should occur. Investigate the approval requirements for the waiver.

Corey you may not remember but this time last year we were going through the exact same steps when we were being told you had to be discharged from Bryn Mawr. I will be honest with you; everyone was very upset that we had to bring you home. Not that we didn’t want you to come home but the fear of how we were going to care for you and how would you make progress outside of a hospital setting worried us all! When I look back at that time, we thought it was the worst decision possible but we also knew we had no alternative. Now almost a year later, look at where you are…it is obvious it was the best decision ever!

Honey each major threshold in our life presents uncertainty. Remember how nervous you were moving from the elementary school to the middle school then to the high school? Remember when you picked up and moved to Long Island for the summer to become a camp counselor? You were very nervous because you didn’t know anyone except our family and you wouldn’t see them during the day except in passing. That first summer, you created amazing new friendships that have stayed strong thru today. We talked about graduating HS and going onto college; you were weighing so many choices as to where to go and what felt right, never completely confident you were making the right decisions.

As I tried to dissect our current state of unknowns all that I could think of was the following; “we were so worried about coming home and it turned out to be the best choice we could have made (even if it was made for us). Perhaps this next step (that is being forced on us) might be the spring board to even greater achievements in the coming year.

That being said it’s our responsibility to think through all the scenarios, plan and contact the new players to prepare for who we will be working with but ultimately we just have to see how this all will unfold. We can not focus solely on what’s to come. If we do we’ll lose momentum on the strides we’re currently making. Everything will work out the way it is supposed to…it’s a matter of time, xoxo