November 29 - Update

Since Heather has been home, not much has changed.
She still cannot feel her left leg or move it by herself.  Her entire left side is weak and numb.  She is in pain and sick to her stomach most of the time.
She starts physical and occupational therapies this week.

Heading home again

After consults with neurosurgeons, neurologists, OT, and PT, they're sending us home again. Still numb on the left side and very weak. Going to see what happens in the next several days and follow up with the docs.

The Incision

A Long Four Days

I've been updating this blog from my phone in bits and pieces, so I thought I'd pull the events of the last four days together into a single post.


Thursday morning, we showed up at the hospital at 4:45 AM.  After dealing with Admitting and going through all of the medical history and other paperwork, Heather was wheeled in for surgery at 7:30 AM.  At 9:15 AM, I received a call from one of the nurses assisting in the surgery.  She let me know that the surgery was underway and proceeding normally.  At 11:15 AM, the surgeon came out and let me know that the surgery had gone well and Heather would be heading into recovery shortly.  At about 1:30 PM, they allowed me to go back and see Heather in the recovery ICU.  During this time, Heather mentioned that her left side didn't feel right.  The nurse said it was most likely residual effects from anesthesia.  They transitioned her to the ICU at approximately 2:00 PM.  I was allowed to see her in the ICU room at 2:30 PM.

From Thursday through Saturday morning, I watched nurses and residents perform neurological checks on Heather.  Every time her left leg and arm were very weak.  She complained of numbness on the left side of her face and left leg.  Friday night Heather was taken back for a routine MRI.

Saturday morning, the resident said that the MRI looked fine and Heather could go home.  The nurse dismissed the concerns about Heather's leg being weak and numb as a result of positioning.  Based on the nurses evaluation, she did not send in a Physical Therapist even though other nurses had tried to schedule therapy for Heather.  It was at this time that I sent an email to the surgeon letting him know that we were being railroaded out of the hospital.

Heather was discharged from St. Joseph's at approximately 11:30 AM on Saturday.

We drove home to Prescott hoping that Heather's condition would improve.

Sunday morning, nothing had changed.  I emailed the surgeon again and informed him of Heather's condition.  I was able to arrange for a Physical Therapist to come look at Heather and give an evaluation.  While we were waiting for the Physical Therapist, the surgeon replied to the email and said that Heather needed to be back in the hospital.  The Physical Therapist agreed that Heather should be re-hospitalized, so we drove back down to Phoenix.  We arrived at St. Joseph's at approximately 4:15 PM and Heather was re-admitted.

The resident re-evaluated Heather's neurological function and after pinching her left leg as hard as possible to provoke a response from Heather, stated that the weakness on the left side that she was exhibiting was not present in his previous evaluations.  It is obvious to everyone except for the resident that Heather had a stroke on Thursday that was ignored and misdiagnosed.

Heather underwent a second MRI at approximately 8:20 PM.  She has another, more detailed MRI scheduled for Monday morning.

Back in the hospital

So it turns out they're not supposed to kick you out of the hospital when you can't feel the left side of your body.

We're back down in the ICU at St. Joseph's.

Released from the hospital

Heather was released from the hospital today and is heading home.

Recovery update nov 19

Heather got out of bed with assistance for the first time today. Her left side is numb and very weak.

In Recovery

Heather's awake and responsive.  Time will tell the full effects.

Heather in recovery

Heather's out of surgery and in recovery.

Surgery Underway

Heather was taken into surgery at 7:30AM MST. As of 9:15, the surgery was underway and proceeding fine.

Getting things straight

I have been asked a lot of questions regarding my surgery, insurance issues, etc, so I thought that I would put all of the information that I have (as of today) within 1 document.

1) AHCCCS has denied coverage for my surgery based on my husband's and my combined income. (11/9/10)

2) I reapplied for AHCCCS on 11/9/10 and await an interview with them regarding my application.

3) If AHCCCS is "pending", St. Joe's will go ahead with my surgery without any hospital fees up front.

4) If AHCCCS denies me again, I will be responsible for the entire hospital bill, which is
$105, 184. If I can pay in 30 days (from my surgery date) I receive a 30% discount, which leaves me with a bill of $73,648.80.

5) I have been unable to get any form of private insurance (think Blue Cross, Blue Shield, Aetna, etc) due to the Chiari Malformation and other conditions from which I suffer from.

6) Amazing Grace Church is handling the funds because my own local congregation did not want to help. A friend of mine is good friends with the pastor at Amazing Grace and they graciously offered to help with the 501(c)3. The funds are not being sent directly to the church, because it is located in downtown Phoenix and the mailbox is not as secure. Because of this, any funds are being sent directly to the pastor's personal address.

I hope that this brings some clarity to my situation.

25 years

I was doing some searching today about others who suffer from Chiari Malformation and how long it took for others to receive a diagnosis. I hate to admit this, but I happen to rank near the top of the amount of time taken for a diagnosis to be made. In fact, I have had symptoms since I was born, over 25 years ago.

25 years is a long time to suffer from something.
25 years is a long time to battle.
25 years is a long time to have unexplained symptoms.
25 years is a long time to be sick.

I have spent the last 25 years of my life being ill. There haven't been many days in which I have been well. I want to be alive and see the next 25 years of my life. I want to experience health in the next 25 years of my life. And the only possibility for that to occur, is by having this surgery.

Thanks for helping me do that.

Another day...dealing with St. Joe's.

Well, today has been quite busy! My husband, Tim, and I were busy making phones calls, writing emails and visiting places to live. We have traversed all over both Prescott and Prescott Valley to handle all of these things.

A friend of ours contacted St. Joe's in Phoenix on my behalf today. Keep reading to see what they REALLY think.

St. Joe's doesn't believe that the money will be raised for my surgery.

St. Joe's stated that if I were to suffer from another stroke, that they would NOT expedite my surgery. In fact, all they would do is "revive me to an alert state".

St. Joe's told our friend that they help those who are trauma patients.

When asked if they would help me if I suffer from another stroke, they stated "not necessarily" because a stroke is not considered a trauma.

St. Joe's also believes that my surgery is ELECTIVE. My Neurosurgeon states quite the opposite. He says that it is "MEDICALLY NECESSARY FOR MY SURVIVAL". But the hospital sees it as something that I just want to do.

What have I learned from this experience today?
That the hospital billing department is in charge of the hospital.

Help me show the billing department that they are NOT right and that the money WILL be raised!
Thanks for all of your support!!!