Tuesday, April 15, 2014

In the nick of time ...

Doctors appointment for Austin today, sadly we got there early (like to be punctual) and had to wait and wait.

Our regular doctor was out but we knew that was coming, we were scheduled with someone else. She had a beautiful 8lb baby boy yesterday and from what I heard they are all doing very well. She is already missed by the staff, Austin and I.   After being there over 1.5 hours I asked if we could just have someone fill out a release form so Austin could go back to school.

He was doing a great job waiting but in situations like this one never knows how long it will stay good. That's life living with one on the autism spectrum, things can change in a blink of an eye.

Thankfully, the head of the department, hematology/oncology, who attended to him while he was in the hospital was available and she saw us instead (bonus - this worked out well for the two patients waiting behind us - shortened there wait, moved them up).

It was a very typical appointment, temp, blood pressure and they told me numbers looked good, typed up our release and in five minutes we were done. Dr. D was very pleased in how well the Rituximab treatments had worked in bringing his numbers back up to the normal range.

It almost feels like years ago when I had to sit down with the girls and tell them about this treatment, when in reality it's only been three months.  I was a little worried about that first round and knew that I couldn't hold back anything on the risks of the treatment with the family - a single treatment could be fatal.  Just six months ago I would have never dreamed that I'd have to have life or death discussions with the girls, explaining that we were in a no win situation, we had to go with the treatment otherwise his condition would have been fatal. On some days it feels like I have aged 100 years and on others, most of the time, I am just so happy we have today.

Blood draws will be every other week now and we can go back in six weeks (instead of four) so they can take his temp, blood pressure and hopefully once again tell us all numbers look good. $30 every time we walk into the office for this routine, makes me cringe a little but what can we do - too bad we can't have e-visits.

Breathing a little easier with each passing day, hoping we stay the course.

Austin was rewarded with a couple of his favorite items for doing so well waiting, a Dew and a small bag of M & Ms. Naturally during the wait I think I heard twice a minute "I'm hungry" :-).

We ended up leaving the hospital just in time. When we got down to the lower self-park area it was starting to fill with smoke.  And, Austin said "Holy Smoke Batman"  :-).  As we were almost out we had to pause to let the police go by.  I'm happy we got out of there when we did because I didn't want the Flex smelling like smoke for months to come.

He's happy to be home and once again the History channel is on the TV - I'm looking forward to 4/28 from 8 am until 1 pm there will be NO History channel on the TV.  The TV won't even be on :-).

Monday, April 14, 2014


If it’s one thing my kids are it would have to be resilient and as a mother I think I’ve done the job I needed to do.

Austin’s numbers are good. We see the hematologist tomorrow and I’ll have them write up the release to send him back to school after Easter break.

Gen didn’t get selected this weekend for the hockey team she wanted to make but she’s already moved on. She’s joking and looking forward. Gotta love her sense of humor, she texted the skills coach she works with about Monday’s session and asked “Am I on for Monday or have I been cut from that too? lol”

In our household we look forward not back.  Yesterday is over, it is what it is. Today and tomorrow is a whole different ball game or should I say hockey game.

I only admire Genevieve for putting things in perspective, in reality hockey will only be a very small part of her life. In the big scheme of things ten years from now it’s really not gonna matter what team she played for yet going through these experiences as a fifteen-year-old does matter. She’s demonstrated how irrepressible she is.  No matter what happens in life I’m pretty darn sure she’ll land on her feet.

Shouldn’t we all treat life that way?

Do you want to spend your life always looking back?

If you do so you’ll miss so much today and tomorrow that you’ll never get back and you’ll only have a life filled with regret and time wasted. On that note I’d like to end with the Apache Blessing:

May the sun
bring you energy by day, 

May the moon
softly restore you by night,

May the rain
wash away your worries,

May the breeze
blow new strength into your being.

May you walk
gently through the world and know
its beauty all the days of your life. 

Monday, April 7, 2014

In Your Dreams ...

It’s Monday we’ve done our blood work and I’m anxiously awaiting the results.  Last week was the first week with no steroids, I’m hoping things just level off and we will soon discover what our new normal will be.  

While I was writing this the numbers did come in, all is well, we’ve hit a new high for the hemoglobin, 14.9, I sigh with relief yet my mind still wanders to what next Monday will hold.

Yesterday afternoon Austin had a meltdown which makes me sad, it just came out of nowhere.  I’m thinking something physical might have been going on in his head or body.  I just wish he’d remember if something hurts, if something is wrong, he just needs to tell mom.  Later he told me his head hurt, not sure if it was hurting before or hurting because of how hyperaroused he got.  I’m 90% sure if I was hyperaroused, unable to regulate myself, in full meltdown mode, my head would hurt afterwards too.

Episodes like this are always followed by extreme remorse, he’ll weep and ask forgiveness and sadly he’ll make a promise that I know he’ll never keep “I won’t do it again”.  I know he doesn’t want to ever do it again but it’s not something he can regulate. When he starts to meltdown there are times I can’t redirect it, I just need to let it cycle through, cycle through the rage so we can get to the sorrow. The switch has been flipped and it appears to be on a timer, it has to cycle through.

It’s utterly amazing that through all his illness and all the meds, all the roids, the hospital stays, the treatments at the cancer center for his infusions his behavior was remarkably good. Some things just don’t make sense at all and I have no recourse but to be thankful and feel blessed that he did so well.

Last night I had the strangest dream.  Fragile X and autism can be challenging enough and it ticks me off that it woke me up feeling like I was having a panic attack in the middle of the night

In the dream I was in a auditorium having to pass in front of a few people.  There was a family with a couple of young men with them who had special needs and when I passed in front of the one they grabbed the tendon behind my knee and was twisting it.  I looked at them and said “Please don’t hurt me”, they let go.  I gently stroked his face and told them it was okay.

That’s not what bothered me, what broke my heart was the look on the parents face, a look of hopelessness, a look of sorrow and all I wanted to do was comfort them, to take away their sorrow. To let them know I wasn’t upset with them that I understood, that I have walked in their shoes.

At that point I awoke to a pounding heart, my pulse was racing and I was filled with terror.  Why? Because in reality, behind closed doors that family exists, I know it, I feel it, I’ve lived it and it saddens me that I can’t make it go away. It wasn’t the action of the young man because I realize that they were not in control, what broke my heart was the look on the parents face.

There are things in life we have no control over and there are people who may never get it.  It wasn’t just the hopelessness and sorrow that touched me, it was the look of understanding and compassion in their eyes that broke me down. The sense of relief that somebody understands, somebody cares, that others would not pass judgment.

Last night as I laid there I was angry that my dreams were modeling the part of life I’d like to lay to rest, I’d like to not focus on. Really in my waking hours of the day it’s challenging enough on some days to deal with fragile X and autism, I don’t need to deal with it in my dreams. I want dreams of a calming ocean, I want dreams of flowers, sunshine, friendship and love. If my dreams aren’t going to deliver it I guess it’s critical that I do find it during the course of my day. And with that, I told this tale to the girls this morning and we laughed, that even in my sleep sometimes fragile X and autism really ticks me off, fires me up.

And just maybe I had that dream to remind me to share with others, to let them know I do understand, I have walked in your shoes and no matter what, we are not failures. No matter how battered, physically or emotionally we are at times, we still go on no matter what, we never lose sight of the calming ocean, the flowers, our friends or the sunshine. 

“Courage isn't having the strength to go on - it is going on when you don't have strength." ~ Napoleon Bonaparte

Friday, April 4, 2014

Time ...

Seems to be the one thing I have struggled to manage lately.  Often too little and I wonder why we are never happy as it passes too quickly or slowly.

Austin’s numbers are still very good, hemoglobin is at 14.7 – the highest yet, platelets are still running high but we took the last dose of steroids on Monday and I’m wondering if that will help them drop.

Time still weighs heavy on my mind lately as I prepare for a couple of good-byes.

Judy from the lake will be missed dearly, I would have never imagined last September that I would not be seeing your smiling face this summer. Visitation at the funeral home will be today and like any time like this I falter in what to say, only hope I’ll find the right words to express my sympathy. 

Tomorrow we’ll say good-bye to Carri. Her time with us was far too short, thankful that Carri packed so much into what little time she had with us.  I’m hoping it will be a true celebration of her life, her spirit.

I’ve decided that time is just not something that can be micro-managed. There are only 24 hours in each and every day and what will be important is that during that time I do what matters. I do what I can, when I can, and accept that there will be moments that I’ll be unable to do all that I may want to do.

Today is important because none of us truly know if we will see tomorrow. So please, spend your time wisely. Find something to laugh about today, find someone to hug and share your love. 

Tuesday, March 25, 2014

ac·count·abil·i·ty noun \ə-ˌkau̇n-tə-ˈbi-lə-tē\


:  the quality or state of being accountableespecially :  an obligation or willingness to accept responsibility or to account for one's actions,

“A body of men holding themselves accountable to nobody ought not to be trusted by anybody.” 
― Thomas Paine
 I'm looking for it but I'm not sure I'll ever make it happen.

Before I begin my rant let me note that Austin's numbers are holding steady 14.3 for the hemoglobin, platelets are a little raised still 553 but it is what it is. 

I am so tired of dealing with hospitals and insurance but at least now I can truly appreciate and understand the difficulties many families might face when dealing with a chronic condition.  

Today it was time to do a little writing.  I was furious that in my dispute of a co-pay that the "Service Excellence Associate" never took the time to talk to me, so the following was my response which I sent to customer service at HF Wyandotte Hospital and to Hap.  Who knows if I will accomplish anything but at least I know I've tried. 

*** start of message ***

Ref: Account No: xxxxxxxxxxx, Date of service:  October 24-25, 2013

I am disputing the co-pay assessed for a visit to the Emergency Room at Henry Ford Wyandotte Hospital on 10/24/13 in which I was not discharged from the Emergency Room but held overnight.  Overall, the stay at Wyandotte Hospital and the time in which it has taken me to address this issue has not been a positive experience and reflects poorly on Henry Ford Health Systems customer service.
On October 23, 2014, I received treatment at the Dermatology Offices at Henry Ford New Center in Detroit.  A surgical procedure was done to remove skin cancer. On October 24, 2014, I had two incidents/complications from the procedure:
1.       With no activity I found myself profusely sweating with my body unable to regulate my temperature
2.       A fainting spell which occurred when I went to pick up my son who attends the Josephine Brighton Skills Center.  The nurse on staff took my blood pressure which was 84/52. At this point I decided it was not wise for me to be driving so I made arrangements to be transported home.
I called the Dermatology Office and was advised to go to the ER. At the ER I was not discharged from the ER but was admitted into a room for further testing.
I have been informed that my co-pay is still required because the hospital did not code the overnight stay as an admission they coded the overnight stay as observation. All because of how the overnight stay was coded impacted what or what not I was liable for. I would like to see the policy on what defines an admission and what defines an observation when it comes to overnight stays.  I would like the Hospital to review its policy with customer service in mind and make a few revisions.
I called billing services at Wyandotte Hospital and was told I needed to contact Hap, I called Hap talked to a customer service representative and a supervisor.  I was told because Wyandotte coded this as observation only the co-pay was assessed.  I called Wyandotte again and was told I needed to have a doctor to change the code.  I asked to speak to a supervisor and was told I was still responsible for the co-pay.  I asked to dispute this charge and was told I would be contacted by a patient advocate. 
On March 22, 2014, I received a letter from Xxxx Xxxxxxxxx, a Service Excellence Associate, in this letter he noted that “The Chairman and Medical Director of the Emergency Department has reviewed your medical records and determined that the care and treatment that you received was appropriate. You received proper evaluation and were placed in the hospital for further testing.  As a result, your co-pay will continue to be your responsibility.”

I have a problem with this:
1.       Mr. Xxxxxxxxx never connected with me, he talked to the ER department but did not call me. I did not have a voice or was given the opportunity to present my concerns.
2.       My trip to the ER was a direct result of services provided on 10/23/13, if I would have not had the treatment I would have had no need to visit the ER.
3.       I was not discharged from the ER and sent home on 10/24/13, I was kept overnight.
4.       I am not debating that the care and treatment I received was or was not appropriate, I am debating how it was coded.
With the time frame related to a procedure done on 10/23, because it was within 24 hours of this procedure, I do not believe I should be required to have a co-pay. My body reacted very negatively to this procedure and a trip to the ER was warranted because of the reaction.
Furthermore, this is not my first negative experience with Henry Ford Wyandotte Hospital and Henry Ford Health Systems.
In December 2013, my adult son who is disabled (Fragile X Syndrome and Autism) developed Hemolytic Anemia. He was hospitalized at the Main Campus from 12/3 to 12/17. Steroid and IVIG treatments failed to treat the anemia and his spleen was removed on 12/12. Just prior to, and during the surgery, he had an allergic reaction in which the cause was never identified even though I repeatedly questioned what happened. He came out of the surgery with a very swollen face and the remnants of hives.  On January 27, 2014, we had an appointment with Infectious Disease at the Henry Ford Main Campus in which they gave him a Pneumococcal booster.  At 10 p.m. that evening it was noted that his face and upper lip was swollen and at that time of the night the only options available to me was the ER.  Please keep in mind the patient because of his disability is unable to communicate the severity of his distress. With his medical history and recent surgery as his parent and guardian it’s critical that I be meticulous in addressing his care.
Once again, our visit to the ER was a direct result of a treatment/procedure at a Henry Ford Health Systems (HFHS) facility.  It was not on a whim that I took him to the ER, it was out of necessity because it was the only option available.  I was billed a $150 co-pay for that visit as well, Account #: xxxxxxxxx, which I have disputed and I am waiting to determine if his Medicaid, his secondary insurance to HAP, will cover. 
Even if his treatment is covered and Medicaid picks up the $150 co-pay charge it does not address the fact that the trip to the ER was a direct result of what occurred at our office visit that very same day.  In this situation I was once again bounced between Wyandotte’s Billing Department, HFHS billing department, the patient advocates office and Hap.
I’m left with a very negative after taste when it comes to customer service, it is as if the patient does not matter, the patient, the customer comes second to the almighty dollar.  I’m discouraged that I can’t make one phone call to resolve an issue but it takes multiple calls, with not one individual besides myself taking ownership of the problem, and letter writing.
If Henry Ford Wyandotte and Henry Ford Health Systems are truly concerned about patient satisfaction, service excellence, the only way to correctly address this issue is to create a policy in which within a specific time period, for any follow-up services to treatments/procedures administered at a Henry Ford Facility, all co-pays should be waived. A policy that would not only positively impact my family but benefit others who have also been in this situation. I am held accountable for my health and well-being, I’m held accountable for payment for services rendered, where is the accountability for Henry Ford Health Systems?

*** End ***
It's probably a good thing I don't rant often but it truly irks me when any organization states customer service matters when they don't walk the talk.  I don't think I'm asking for too much, I just think they need to be held accountable. 

Monday, March 17, 2014

Please Hold - Again

The good news Hemoglobin is at 14.4, still in the normal range, will drop the steroids to 10 mgs tomorrow.  His platelet count took a nice jump down as well, to 500 only 50 above the normal range.  His white blood count is high, over 14, we don't know whats up with that, oh well.

Doctors visit today, same old - same old, everything looks good but when I ask when will we know that we've beat this they reply we don't know.  Two months from now if everything is clear it doesn't mean it won't happen again, we won't relapse.  Six months from now if everything is clear it doesn't mean it won't happen again, we won't relapse.  I guess the saying "It is what it is" truly applies here.

Next appointment is mid-April and if we are still holding steady I think I'll have them write the script that he can return to school after Easter break, one more step that gets us closer to normal.

As for normal, it seems to be quite normal for me with billing issues to spend hours on the phone, each week (and I'm using email options as well) trying to resolve issues.  Finally fixed the over-charge for 12/23 visit but then they told it was applied to an 1/15/14 visit in which there should not have been a co-pay at all.  HFHS billing sends me to Hap, Hap sends me to HFHS, same with Wyandotte Hospital.

Add to that I just got a bill for my hospital stay, in which they kept me over night and this charge, after two phone calls and one transfer to a supervisor, 15 hours on the phone it all comes down to coding, really? Being held in observation doesn't count as being admitted, yikes.  Not sure if I'll make that follow-up call to Wyandotte today but I'm going to argue that especially since the day before I had out-patient surgery to have skin cancer removed and if it wasn't for how my body responded to that surgery and the meds used for surgery I would have never been in the ER or Hospital in the first place.  Sadly, I'm gaining far too much experience in dealing with health insurance - I could be considered a professional when it's all said and done, I'll have to add it to my "Stay @ Home Mom" resume, :-).

All this really makes me wonder about the number of people who never call, never follow-up, never question charges, the insurance companies/hospitals who are often non-profits sure do make a profit in the long run, what a shame.

Monday, March 10, 2014

Boy you're old ...

What's up with that?

You're one pretty momma!

What's for dinner?

Do you love me?

You're one foxy momma!

Do you want a kiss?

I love your hair, you're kinda pretty.

Oh how I can't wait until I can go out and work in the yard for a little bit, the above statements go on, and on, throughout the day, numerous times, unless I've nagged him then we get a few negative phrases.  I think I've got cabin fever :-).  Go figure - Austin and I have been together a lot since December 3, 2013.

Numbers this week are still holding steady.  Hemoglobin had a slight drop 14.2 to 14.1, so very small and we are still in the normal range.  Platelets didn't continue to drop, we went up a little from 527 to 609, normal range is below 450, oh well, it is what it is.