Hi Everyone,

Just in case you were wondering if GOD has a sense of humor, feel free to spend a week with us…and it’s only Tuesday!

When we arrived at Bryn Mawr at 10:50am, I smelled an unusual odor emanating from under the car. It caused a slight concern but I knew I had an appt with our mechanic next week. As I proceeded to unbuckle Corey from the left side of the van, opened the hatchback and lowered the ramp, I looked to the right side of the van and saw an orange fluid streaming down towards the rear of the vehicle. I quickly looked under the van and saw we were loosing fluid. I’m not mechanically inclined but I’m sure it had to be something important!

I called Andy, our mechanic. This man is like a surgeon. He can diagnose a car’s ailment based on the “sounds” I attempt to recreate. In this case; “Andy, I think I might need to see you before next week”? Regardless of the urgency in my voice, he always remains calm. “What’s up”? “There’s orange kool-aid pouring out of something from under the van” (That’s as technical as I get). Andy asked the exact location of the leak.
“Okay, you’ll have to get the car towed. Don’t drive it home, it’s the dual heating…” (Like a surgeon speaking to a first year med student I had no idea what followed, he lost me after get the car towed). “What if I drive home without the heat on”? The surgeon brought it down to my level, “you could drive it home but then you’ll be looking for a new van”. That I understood!

Here’s the issue…if the van is towed, how do we get Corey home when she travels in her wheelchair? The next hour was logistics planning;

Thank You AAA Plus; they towed the van to Andy’s
Thank You Ride-Away for educating us on how to rent a handicapped vehicle. They were at the ready with a rental they would have delivered to Bryn Mawr if we needed it.
Thank You Bryn Mawr Rehab for allowing one of your drivers to use your vehicle to drive us to Andy’s
Thank You Andy’s Auto Tech, Andy and Stephen worked on Corey’s van to repair the issue by the time we arrived at 4:30pm.

Last nights post included a paragraph, ‘Much of our resilience comes from community – from the relationships that allow us to lean on each other for support when we need it. That was a premonition!

Due to the chaotic morning, we missed our first session with OT. Corey did manage to take a 30 minute nap, we had lunch and then we headed to Kate’s session. Our posts generally focus on the highlights of a session or a moment in our day. Tonight I’m compelled to share a few more details.

Picture a small office, approximately 10’ x 8’, with a round table and 3 chairs. Corey stays in her wheel chair; I sit to her right, Kate to her left. The session was proceeding with Corey fixating her gaze on me refusing to acknowledge Kate or her questions. She refused to answer unless I repeated the question. After 10 minutes I insisted Corey acknowledge Kate and turn to look at her when she spoke. Corey screamed, “NOOO” and began kicking and hitting me. (The room is not sound proof; unfortunately, this outburst does not alarm the staff as they recognize Corey’s voice now). We worked through the outburst which led to several volatile eruptions.

I stood up walked around the back of Corey’s chair to sit to Kate’s left side. Kate separated the two of us. Corey continued screaming, “MOM” “No, Don’t leave me”!
Kate and I calmed her down. Once she was settled, I introduced a new analogy.

M – Corey, do you remember cheerleading?
C – She glared at me but nodded her head yes.
M – Do you think I could have taught you a double back handspring?
C – She allowed herself to smirk at the thought of that lesson. Half smiling she said ‘No’
M – Exactly! I couldn’t teach you a back summersault; in fact, I call the back handsprings the back flippy things.
M – Missy and Karla were your coaches.
M – Do you think Chef D or Chef Young would let me teach their culinary classes?
C – She broke a smile and shook her head emphatically, ‘No’
M – Granted, I’m sure I could do better than Peanut Butter and Jelly but my attempt at cooking wouldn’t get you into Culinary College would it. (She agreed)
M – Kate, Elaine and Natalie are your therapy coaches. I can not help you without them. They are the experts.
M – Now, remember when we went to competitions?
C – She nodded yes
M – Was I allowed on the matte? Where did I sit?
C – in the bleachers
M – Right! Kate is your coach when we are in this room and I’m going to sit over here.
C – She screamed, panicked that I was too far away.
M – Can you see me? I’m right here…in the bleachers.

Kate instantly took over asking Corey questions about the Beach. Her subject change was brilliant because it is one of Corey’s favorite memories. I sat in the corner and deliberately didn’t give eye contact to Corey. Eventually, Kate engaged her in conversation and managed to involve her in writing a packing list for a beach trip.

It may appear that the last 10 minutes of the hour session were the most productive in regard to the assigned task but the 50 minutes prior to our packing list was truly the most important. Today’s post recounts the steps to a behavior plan that evolves minute by minute on a daily basis. It’s difficult to work with TBI patients that cannot control their impulsivity or manage their executive reasoning skills. At times they are cognoscente of what is appropriate and in the next breath they don’t have the emotional maturity of a toddler.

Corey you are an amazing athlete. I have watched you push yourself, accepting nothing less then the best you can be on that floor. Did you get frustrated, YES! Did you give your coaches a hard time, YES! Did you quit, NO ~

You are talented, tenacious, disciplined and motivated. You never stop and now when you are working on the hardest exercises of your life, we will not let you quit. Yes you have to do the work, yes every day is exhausting and Yes; it’s not fair but you are NOT alone. We are all ‘sitting in the stands’ cheering you on, watching you get stronger, in awe of what you are accomplishing. You can do this and we’re here to help!

We love you and we’re very proud of you, xoxo

Hi Everyone,

This morning was our first level appeal for continued skilled nursing. I attended via teleconference. When you go through an appeal with Medicaid, they actually use the appeals department at Blue Cross.

We submitted two letters of Medical Necessity, two weeks of nurse’s notes, Corey’s plan of care and several summaries of care from assorted doctors; such as the seizure specialist and primary care physician. I am allowed an opportunity to advocate on Corey’s behalf with a 10-15 minute statement pleading why we believe our appeal should be approved.

The panel was introduced prior to taking my statement. The Medical Director and two members of Blue Cross were present along with the impartial moderator. I was given my start time.

I prepared 5 key points which included details as to why we need skilled nursing and not a home health aide.

1. VP shunt – a skilled nurse is trained to recognize the signs/symptoms of a blocked shunt which requires prompt medical treatment. Corey has weekly migraines and headaches. A skilled nurse can assess the difference and administer “as needed” medication to relieve her pain.
2. Seizure – Corey’s medication is 60% effective. She does have break through seizures requiring Oxygen and Diastat (a controlled substance) to be administered as part of seizure precaution/protocol. In addition, she will be taking an ambulatory EEG due to increased focal seizures. A skilled nurse is trained to recognize the signs of seizures and check vital signs to execute protocol.
3. Aspiration – Corey’s feeding tube was removed, however, she has severe reflux requiring 80mg of Nexium. She chokes daily when she eats and drinks as she is still developing the muscles required for swallowing her food/drink. During the night, she will experience the same regurgitation; however, she does not wake herself up. She can not sit up independently and if she falls off her pillow and/or should accidently roll over, she can not adjust herself therefore is at risk for aspiration.
4. Behavior and Memory – Corey’s injury has left her with severe memory loss. She is unaware of the time, day, current year and/or season of the year. Her behavior can be combative and volatile. Her behavior management plan can only be carried out by a higher level of skilled nursing which may also require administering additional medication assessed by the nurse.
5. We are appealing a home health aide and 40 hours of coverage for several reasons; A home health aide can not administer any medications, especially the “as needed” medications, cannot turn the dial for oxygen nor administer diastat for a breakthrough seizure, cannot use the suction machine to assist with the risk of aspiration either during the day or through the evening and is not educated or trained to properly assess the management of a VP shunt or carry out seizure protocol.

The Medical Director thanked me for my input and stated she would take these points into consideration during their review. She asked two questions; when was the last time Diastat was administered and when the last time suction was was needed. I reiterated that Corey may not be having seizures daily or weekly, she may have moments of choking that don’t require suctioning but these “dates” are not indicative of her daily need for skilled nursing. I continued with the letter of medical necessity that Dr. Long, the Director of the Brain Injury Unit at Bryn Mawr, has clearly emphasized that Corey’s current level of care requires skilled nursing for round the clock care and supervision. I also pointed out the documentation from the home health agency was not accurate as we do not have consistent staffing. At the moment we have two overnight and two day shifts covered, I am “on” 5 nights and 5 days. (There was no acknowledgement to this rebuttal)

The panel thanked me for my participation. Just before the call disconnected, I asked the Medical Director one last question, “Could you please tell me your medical back round”?
Her response, “I am a certified OBGYN”

…Thank You…

The panel made their determination by the end of the business day. I will receive a letter with their decision within the next 5 days. If we disagree with the outcome, we can file a second level appeal.

The rest of the day was more productive! I attended a BIA-NJ webinar on Self Advocacy. The information gained from this class will continue to assist us in the development of our Advocacy Company, 2nd Call Advocacy Group, as well as assisting families that call into the BIA-PA resource line.

Corey’s ultrasound went well. She participated and the pictures were clear. We are trying to determine if Corey’s chronic urgency and frequency is a clinical issue or a neurological issue related to her short term memory. We will get the results next week. Depending on the outcome we may seek an opinion from an Urologist.

We closed the day with an IEP meeting with the school district. The team is working cohesively with Bryn Mawr. The team’s primary focus will continue to physically strengthen muscles, cognitively strengthen memory and discovering what connections are still developing.

Quite a day…and some of you think we sit home eating bon bon’s!

Finally, I’m excited to present the movie filmed by Bryn Mawr of Corey walking on the Lokomat. This short clip will air on their website to promote the possibilities that rehabilitation can offer. We hope you enjoy watching Corey walk on this amazing machine, xoxo