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Monday, September 17, 2012

Hope they publish correction

Dear Steve:  

So happy to see the article this morning in the paper and the front page!  I hope that it gets some well deserved attention.  Thank you for taking the time to speak with me and investing your efforts and time into this story.

There is one item that I wanted to comment on directly to you as it is not correct and wanted to clarify:

Megan Garrett, 6, wastes away from a degenerative cell disease, has daily seizures and never leaves her bed.  

Reading the article and was upset at  about the statement about about  Megan never leaving her bed.  That is not true at all.    She is" bed
bound "meaning unable to leave her bed on her own and needs full assistance to do so but Megan does leave her bed and accompanies us on family outings, goes in our pool and enjoys as much time as possible out of her bed.  She is unable to attend to herself for any daily activities of life and is a "full assist" patient.  If she NEVER left her bed what would be the point of having her at home - that is the care she would receive in a nursing home if I did not have the level of nursing care I needed to keep her here so she has a quality of life.   In a nutshell this is the reason that this is so important to our family personally. 

I thought it could be misconstrued this way to others as well.   I realize we covered a lot of ground in a short period of time and if it did not tie back to the reason of in home vs. nursing home I would not have even emailed about it. 

Please feel free to contact me with any other questions or comments. 


Terri Garrett

Today's front page

Families grapple with shrinking state services offered to 'medically fragile' kids

By Stephen Nohlgren, Times Staff Writer
In Print: Monday, September 17, 2012
Home health nurse Linda Debello holds Megan Garrett upright as she tries to help her cough and clear chest congestion.
Home health nurse Linda Debello holds Megan Garrett upright as she tries to help her cough and clear chest congestion.
Rather than toys or clothes, the dresser drawers next to Megan’s bed are filled with medical supplies.
Rather than toys or clothes, the dresser drawers next to Megan’s bed are filled with medical supplies.

We call them "medically fragile'' children, but labels don't begin to convey the help they need to survive.
Josiah Conway, 9, sings karaoke and can zoom through an iPhone, but dozens of complications might close his airway at any moment. He stopped breathing earlier this month when medication with strawberry flavoring triggered one of many allergies.
Megan Garrett, 6, wastes away from a degenerative cell disease, has daily seizures and never leaves her bed. She smiles at her mother's touch, but if her finger happens to land in her mouth during a spasm, she will bite down on it and scream in pain, with no idea why.
These could be anyone's children, whether from genetic defect or too many minutes at the bottom of a swimming pool. And with nurses, machines and medicines for one child costing as much as $200,000 a year, lawmakers decided that taxpayers should often help pick up the tab.
Now, however, Washington and Tallahassee are locked in a legal showdown over Florida's commitment.
In a letter this month, the U.S. Department of Justice accused the state of routinely reducing home care and steering too many kids into nursing homes. If Florida keeps this up, the letter said, the federal government may sue.
Florida is holding firm, saying that it provides all the care the law requires. If any child is underserved, the state says, let us know and we will fix it.
Meanwhile, frazzled parents just want to get through another day.
Megan "knows she is loved and she loves us,'' Temple Terrace resident Terri Garrett said. "And that makes a huge difference in her will to be here.''
Out of a nursing home
Andi Cali, 6, lost much of his brain function as an infant when he nearly drowned. After his family moved to Spring Hill in 2009, Medicaid paid to keep him in Lakeshore Villas in north Tampa, one of six Florida nursing homes licensed to take in children.
It didn't come cheaply. Like Andi, many of the children are kept alive by feeding tubes and breathing machines. The state requires twice the skilled staff for children as for adults and will pay roughly $200,000 a year, more than double the adult rate.
For three years, Zurale Cali, now 39, would drop her two older children off at school and drive an hour to Tampa to spend the day talking to Andi, massaging his limbs and wheeling him into the garden.
She asked for a nurse at home, but the company that manages Medicaid's funds offered only eight hours a day, she said. That might let her sleep at night without worrying that Andi would choke to death from reflux. But by day, she would have to work the machines herself.
Cali is a stay-at-home mom; her husband works in construction.
The Americans With Disabilities Act requires that people like Andi be treated outside institutions if possible.
So Cali sued and won.
Three months ago, she brought her son home with 24-hour nursing care.
Andi now goes out in a wheelchair, goes on outings with his older brothers and sometimes visits the swimming pool. He also seems more alert.
"He moves his eyes left and right following you,'' his mother said. "He can squeeze your finger and moves his hands more than he did. He smells everything. When he is sleeping and you touch his mouth with meat or egg, he wakes up.''
She wonders if he would be more advanced if she had him home from the beginning.
"I feeling like I am really starting over,'' she said. "I'm just trying to forget the last five years.''
Battling over bills
As of last week, only 221 medically fragile children were living in nursing homes, many of them foster children without parents to take them in.
A few thousand other children are living at home, with parents and the state jockeying once or twice a year over how much help Medicaid must provide.
At-home cost averages about $95,000 but can be much higher for the sickest.
Florida Medicaid pays agencies $23 to $29 an hour for licensed nurses. That labor plus equipment can make 24-hour care more costly than a nursing home.
So Medicaid pays a private contractor to review doctor-prescribed care plans to make sure they are "medically necessary" — including whether family members could double as nurses.
Parents and advocates say with almost every review, the state's contractor denies or reduces nursing hours it pays for. Parents adjust or embark on time-consuming administrative appeals.
"If they got 15 hours last month, they will get 14 hours this month,'' Florida State University law professor Paolo Annino said. "And the thing is with these families, these children don't get better. The justification is that the parents can do more.''
Annino's students have filed about 20 appeals for parents, winning some and negotiating settlements in others.
"These parents are at the end of their strings,'' he said. "A child is on a ventilator, and Medicaid wants to eliminate the nurse and have the parent run it. They are not technologically oriented. I have a hard time changing movies on a VCR. Imagine that your kid is suffocating and you are having to deal with his life support equipment.''
Figures provided by the Agency for Health Care Administration paint a less contentious picture.
About 4,500 plans were reviewed this year, with about a third resulting in fewer hours, the state said. After 365 of those parents appealed, the state prevailed almost half the time.
Plant City resident Josiah Conway had multiple physical complications from birth, including Down syndrome. He underwent 22 surgeries in nine years.
The main problem is keeping Josiah's airway open. He is allergic to so many antibiotics he can't use a ventilator or have a tracheotomy, said his mother, Leslie. Allergic reactions inflame his throat until it shuts. So far, he tolerates only 12 foods.
For a while after birth, the Conways had no help. They slept with Josiah on their chest, waking every five minutes or so to make sure he was still breathing.
"My husband lost a couple of jobs; we were so sleep deprived and calling 911 multiple times a week,'' Conway said. "I had migraines for a year and a half.''
With so much focus on keeping Josiah alive, two older children "lost their parents,'' she said. "They stopped going to church. People stopped coming to the house because he had an immune disorder and the house had to be totally germ free. The kids stopped being involved in Boy Scouts or Girl Scouts.''
Medicaid stepped in after a few years, but then the cuts began. Of the 12 review letters Conway found this week, 10 called for fewer nursing hours, she said. One 2010 review called for a total denial of benefits. She fell apart, crying uncontrollably, and checked herself into a mental hospital.
After the Conways joined a class action lawsuit last year, a judge banned further cuts until the suit is resolved.
Josiah now averages 18 hours of care a day, including a nurse who accompanies him to Robinson Elementary School. He's in the third grade.
Dueling sides
On Sept. 4, Assistant U.S. Attorney General Thomas Perez wrote to Florida Attorney General Pam Bondi, instructing the state to provide better care for medically fragile kids.
Too many are in nursing homes, segregated from society and receiving only 45 minutes of education a day, Perez said, citing visits from Justice Department officials.
The average nursing home stay was three years. Some children had lived there a decade.
Meanwhile, one program to keep kids at home had 20,000 families on a waiting list, he said.
Florida's lawyers disputed those findings Friday in a return letter to Perez.
The state "fully complies with all laws and regulations,'' the letter said. If Washington would share its interviews with families, "we believe the state can clarify any misinformation.''
In Temple Terrace, Terri Garrett dreads her next review and worries Megan's hours will be reduced.
She still bristles at a reviewer's question a few years ago: Haven't you adjusted yet?
"I've adjusted to the fact that my daughter is going to die,'' Garrett said. "I've adjusted that my life has changed all around and my children's lives too.
"I thought if you needed help, it wasn't going to be a bunch of red tape and ropes and fighting.''

Wednesday, September 12, 2012

Respiratory Infection Already?

It is September 12 - way too early for Meg to already be starting up with respiratory infections.  First one hit on the 10th.  She was find at 2:00 pm and by 3:00 pm she sounded like a freight train was in her chest.  Immediately started the extra CPT, nebs and vest treatements.  To no avail....
At 2:30 am she was desaturating and her heart rate was skyrocketing.  Oxygen in the low 80's and heart rate in the 130's while sleeping.  Popped on the nasal canula and O2.  Got the oxygen back to high 90's and heart rate to around 100 at 2 liters.  Of course the fever was right after that.  She was due for her immunoglobulin infustion on Wednesday but I stuck it in and pumped her full of some antibodies a day early hoping to boost something.  That, some extra vitamin C and a fresh blueberry (antioxidant) tube feeding...try everything and anything, right?

We arrived at PCP office at 10:30 am and got our "favorite" Rocephin injection in the leg.  Ouch.  Usually Megan screams like a mad cat when that gorilla juice goes into her tiny little leg but she was so lethargic and wilted she just blinked really hard and made a moan.  

She was off the 02 by the afternoon and we kept up the albuterol nebs and vest treatements.   Last night she did not need to go back on which is awesome and sooooo relieving.  Trying to decide if we should get a second dose of the juice  -  it cant really hurt her but is it too much?  Want her to continue to heal but dont want to clog her up with a/biotics and the side effects from those either.  Oh - what to do?????

Voicing it - kind of

Mrs. Garrett:
John Romano forwarded your email to me. I am a news reporter for the Times
and trying to figure out how we might follow up on this issue.  We are
getting similar emails from other parents.

Would you be willing to have your and your daughter's story told in print,
with names and photographs?

And I am just getting up to speed here. What is the six month review you
are referring to?. Can you summarize what it is and why it is so arduous.

Thank you
Steve Nohlgren


Dear Steve:

I absolutely would be willing to have our story told.  We have been in print before while fighting to get care for Megan.  

The six month review I referred to is what is known at the "recertification" that is conducted by the state appointed third party administrator (EQ Health).  

Every six months the case is reviewed to determine as they refer to it "the appropriate level of care for the child".

In our case the documentation they request is repetitive and reoccurring.  Essentially they ask you to recreate the wheel over and over again which to me is a huge waste of time and money that could be used better to provide the appropriate care and resources - example - more nursing hours where they really are needed.  With the exception of one recertification we have always received a denial or decrease of some sort which then leads to the appeal process.  Whether or not it reaches the formal hearing process depends on what the TPA comes back with when they review it AGAIN. Of importance many families do not have the ability or resources to fight this battle while surviving and caring for their child and/or other children and family to maintain normalcy.  The entire recertification and appeal process is so arduous that it tasks the family emotionally, physically and monetarily as it takes time away from your job and other responsibilities.  Personal and Work schedules for every member of your household is necessary to document your life activities otherwise they are not considered.  I could explain more on this verbally as there is too much to write. Sidenote - I did not know this upon my first review or when certifying with AHCA for services in general.  It was all about my daughter for the approval of medical necessity which is different from the number of hours.   In our case the prognosis is not going to change so why not have annual review to make sure all of the previous approved services are still warranted.   If I felt that something changed for the worse and I needed to ask for more in the course of time between recerts I would ask and document it regardless of what the stated recertification time is.  I think that is what they ask you to do anyway regardless.  However I do realize that there are cases that warrant a six month recertification.

Why does the state think the staff employed by the TPA  is more qualified to say what amount of care a child needs instead of the physicians and specialists that actually know and treat the child?  One question I had at a formal hearing that lasted approximately 3 hours in person to the "certified" physician employed by the TPA was:  "Are you a specialist in my child's field of medicine?"  The answer was no which I knew as there are literally a handful in the ENTIRE country.  It would be like hiring an electrical contractor to assess a roof.  
Megan has at least a dozen specialists that all have different areas to address.  GI, Cardiology, ENT, Pulmonology, Nuerology, Audiology,  Nutrition, Orthopedics, Physiatry, Primary Care, Metabolic and Mitochondrial specialist, etc.
For my specific case the level of care will not decrease as my daughters disease is neurodegenerative, progressive and chronic.  Prognosis is set.  Sadly there will never be improvement and there is no cure.  I wish I could say differently.  It is not a situation we relish or delight in.  Receiving the "appropriate" services is not a luxury as much as it is a necessity for survival and quality of life for my daughter and the rest of our family.  Remaining productive and successful in our life is what is necessary for all concerned and what is best for the state.  If we are taken out of productivity then we are a burden on society - all of us.  I would like to point out that my personal circumstances do not make us reliant on the state plan to assist us in any other areas of any of our needs. We even have primary health insurance in place for Megan and the state plan is secondary for the items that they will not cover - such as the nursing for Megan and her therapy when my primary plan is exhausted. 

Please feel free to contact me.  I appreciate your inquiry and interest on this topic.


Terri Garrett

Saturday, August 18, 2012

It has been a whirlwind of a summer.  I can't believe it is over and school starts next week.  Although I am ready for the boys to go back to school I am not ready for the routine of it all.  We had an awesome summer.  Being able to go on vacation with a pretty healthy, happy Megan is definitely a highlight for me.  I was able to actually relax and take it all in.  From the roadtrip up north to Fire Island and the roadtrip back it was all around great.  I never would have imagined Megan to be such a great long distance car traveler considering she usually starts freaking out 30 minutes into any drive. I think she knew it was a fun trip - not a Dr. appt!!!! 
She has finally gained 2 pounds since the start of the whole GI stimulator in February.  May and June were really bad and I was freaking out thinking that maybe this thing was like everything else - good at first and then somehow her little body just rejects it.  I thought I was going to lose my mind actually.  Palpitations, sweats - all of it.  My prayers were answered and it kicked in somehow over vacation and has been going well.  I did change everything about her med schedules and feeding times to capitalize on more feeding.  Aggressive surgery - aggressive changes.  24 meds are not simple to just flip around and rearrange.  Some interact with others and some it is hard to alter the hours so it has to happen slowly so her body didn't go into withdrawals or overdose mode.  It all worked out though.  I actually have a little pinch of flesh on her thighs for her sub Q IG infusions.  It was killing me to look at her bones in her back and her pelvic area - they stuck out like a cadaver.  Just two pounds has made a difference.  I tell her if she doesn't watch it I am going to have to put her on a diet to keep her booty from getting too big.
Her reflux is still a nightmare - but one thing at a time. 
Life is calling.   Have to write more later.

Tuesday, April 17, 2012

One Tough Chiccy!

Another surgery under her belt and she came home 2 days later.  Wound is healing up pretty well and quicker than I expected.  So far the device is not helping with digestion - but surgeon said it takes about a month to get to full capacity.  For right now we are just watching and waiting!!!

Monday, April 2, 2012


Dear Lord, thank You for choosing me to love a child with a special need. Help me to see the beauty in my child through Your eyes, as a marvelous creation, beautiful and full of potential. You’ve promised a purpose and a plan for my child. Your Word tells me that You use broken individuals to do amazing things for Your glory. Help me then, Lord, to be all that my child needs me to be, as I rely on Your strength to carry us through difficult days. In Jesus’ Name, Amen

Thursday, March 15, 2012

I can look at Megan and see that she has gained a little weight!  This thing is working.  My scale is possessed I think so I can not get her real weight but we moved up a size in diapers.  Her butt cheeks were sticking out.  I am so inspired by the success so far and can not wait to see the surgeon at the end of the month for the real results on the actual scale she weighed in on the day before the surgery.  He said we would do a couple of trials before permanenty implaning but i am hoping that he will see the immediate benefits and pull the trigger so we can move ahead to a permanent fix.  This is actually the first treatment that has been really successful for Megan out of any!  At first her seizures increased a lot but I think it was because her brain was getting nutrition and everything was firing - something new for her.  They seem to have eased up some now that we are 3 1/2 weeks in.  I am not certain of that theory but it seems that way.  She is much more alert and her skin pallor looks beautiful.  No rings around her eyes and sickly pale face.  She seems to have a glow in her complexion.  Nutrition is an amazing thing.  Not a disease cure but certainly helpful.

On the flip side this is something I had to express to someone regarding Megan's disease and the dynamics that go along with it that we dont like to think about.  Hard to write this but in summary it says something of where we are now and where we have been to....

The face of her disease has always been this severe and we do not know what tomorrow will bring for her. Since her official diagnosis right before her 1st birthday we have known this and have had a few very close calls when she somehow rallied back - each time the disease taking some more of her though. It is hard to have to explain that to kids.  its hard to tell an adult. Definitely hurts but we have to deal with the hand we were dealt. We dont spend our time anticipating when it will happen because then we will be wasting the time she has on sorrow that will rear its ugly head eventually. James and Ryan know that every day she is here is a gift and when she is tired and God is ready to take her home - he will. And we will be sad but she will not hurt anymore and will finally be free to run and play with all the other angels and will be with family there that will love her until we see her again. It was awful to have to make them realize this - devastating actually. ...she is the best thing that ever happened to me. As Ryan puts it we are lucky God picked us to have Megan instead of a family that would not care for her the way she needs. In that respect she is very fortunate! She has shown me the true meaning of unconditional love in its purest most innocent form. She does not have a bad bone in her whole body - she knows how to give love and to receive love and she gets and gives plenty of both. I think so much of it that it has kept her here long past her time. A psychic who does not know me or anything about me just blurted that out to my sister at a business function they both attended....she did not know my sister either.

She told her "your niece has been ready to cross over several times and was at the bridge but did not - because of the love her mother has for her she is staying." I realized then that I had to tell Megan that when she was tired she could go and I would be okay - we all would. I dont know what she understands but I told her in case...

Thursday, February 16, 2012

Hoping for success

February has been a whirwind of a month.  With all of the appointments, tests, procedures and consultations Megan had there is surely going to be some good outcomes.  Hopefully anyway.

Monday we had a emergency consult with the GI Dr. at Shands due to her progressive gastroparesis and weight loss.  I went to discuss a GI Stimulator as the options presented by local GI team were not options for Megan.  GJ Tube is not possible due to all of her allergies and that there is not a single enteral formula that meets her needs for the J tube.  Home prepared blenderized diet can not be used which is what I have had to come up with to be able to give her anything.  The other is TPN which is the insertion of a port so she can be fed through IV.  Not going to happen.  You dont put ports in patients with immune system deficiencies or with increased risk of infection.  Last April we started the immunoglobulin therapy for Megan and did not get a port for that.  Instead of monthly IV infusion we do weekly sub Q at home because of the risk the port posed to her.  Put it in so she can deteriorate from infections and most likely pass away.  We still are on the weekly infusion and will continue to be for a while. 

I was very pleased that the Dr. was thinking the same way that I was.  That this is our option.  While new for ped patients - very new - it gives us hope that she can get some nutrition in as the stimulator will serve like a pacemaker does for the heart, only in the stomach muscles.  It will send electric impulses to the muscles that move the food through to digest  He was so on it that we are already scheduled for pre-op on the 23rd and insertion on the 24th up in Gainesville.  It will be amazing to see what her body will do - and her brain if she is absorbing nutrients, vitamins and SEIZURE medications!!!! 

We also had the urodynamics study done at the crack of dawn on Tuesday morning.  Another procedure off the list....I am not scheduling the follow up until after the GI implant because I am not up for anything else this week.  Worn out.  Megan and I both. 

I feel very guilty that I will be gone Thursday through whenever they say Meg is okay to come home.  Minimum of 2 days - depending on what happens.  I know this story well though.  Have lived it out too many times.  My guilt is for Ryan.  It is really hard on him.  All that went on when he was 5 and 6 with Megan really affected him and his anxiety - separation and in general - is severe.  I hate to have to stir it up.  He wont realize it but it will come out and I am certain there will be some regressive behaviors. 

Have been reading a great book.  Not an interesting topic for most but I am getting a lot out of it.  It is called Families Living With Chronic Illness and Disability.  It is so on for a family like mine with the kids, marriage, normal life, the disability world and the lack of knowledge the rest of the world has or cares not to have when it comes to what supports are needed for the family to survive.  It will also be a great tool when it comes to advocating for Megan and our family.  I realize even more that I should not disregard the needs that still exist outside of Megan or feel weak to need more. 

Wednesday, February 1, 2012


Venting here.  I hate doctors offices!!!!  I am so sick of being in them.  And I hate the stupid medical assistants who cant get anything right...........espeially when they are working in an office that is taking care of chronic and disabled children.  Pay attention and follow through on what you were supposed to do so it gets done and I dont have to chase may tail in circles to make sure you do your job.  This is the best.  I am at St. Joes at the Medical Arts Building.  The 3rd floor is all pediatrics and specialists.  Nutrition, mobility, movement disorders, GI, metabolic disorders - basically all the kids being seen there have issues - big ones.  So I am waiting for the Dr. that does the botox injections for spasticity and movement disorders and Megan's feeding pump clogs and I can not get it to work. She is sick with a fever - but we could not miss this appt or else we would be 6 months down the road for a reschedule.  So I make sure we are there.  With her fever I need to make sure she is hydrated and fed - also she has lost 2 more pounds due to more GI complications that we are waiting on the GI Dr.s Med assistant to refer us into Shands on an urgent basis for a GI stimulator so she can digest - which she screwed up - per  my comments above.  Anyway the nutrition is really important.  I go out to the front desk and ask the receptionist for a cup so I can at least get the food out of the feeding bag and give her bolus feeds to keep her hydrated.  She tells me there arent any.  I ask - is there a kitchen that you all use maybe?  A water cooler?  Then I say wait the ped lab is right here - they have to have a sterile specimen cup.  She tells me no.  I tell her why I need it - to feed my daughter and her feeding pump broke(the 60cc syringe I have does not fit into the top of the bag to extract the food and the 10 cc syringe is too short to get in there to get any food.  Besides the fact that it is really hard to do that with a sick crying spastic child with flailing arms without spilling it before being able to get it out and get it into the gtube.  She tells me I cant go to the lab and ask.  I ask her if she is able to....she says no.  She also knew exactly who Megan was because she saw us come in - everyone saw and heard us come in.  She was arching up out of her wheel chair and her arms were extended out cojpletely straight while she was crying and choking on phlem..  I almost killed this woman.....I did not say anything...I just looked at her and walked away in shock.  Can you  imagine?  I felt like telling her I would not pee on her if she was on fire in front of me.  What is wrong with people?????????????????