Moving Day is in 30 Days!!

Things are falling into place for Cleveland...  we move in 30 days!!  We are in the process of gathering records and scheduling appointments at Cleveland Clinic.  Michael is currently scheduled with an esophageal GI specialist that we hope will be able to get him off of the feeding tube.  He's also scheduled with cardiology, endocrinology, and a primary care doctor.  We are still waiting to hear back from neuro...  they are reviewing his records to schedule him with the most appropriate doctor.

As far as Michael goes...  it's been up and down.  The story of his life.  About 2 weeks ago Michael started acting funny and then woke up the next day with a very strange... but familiar headache.  We immediately recognized he was dealing with high intracranial pressure...  pressure in the brain.  His neurologist had us come in the next day for a spinal tap and it confirmed what our suspicions were.  For most of us, our ICP is 13-17.  It is not uncommon for Michael to be closer to 20 and even the low 20s.  His pressure was 31!!!  Dr. Sahgal drained 21 units of fluid off of Michael's brain and by the next day he was feeling MUCH better.

His pressure being that high leads us to many questions.  Why?  What's the syrinx doing in his spine?  Does he have new scar tissue in the brain that's causing it?  We talked with the neurologist and decided not to pursue any more MRIs here, but to wait until we move in 5 weeks.  Why you may ask?  Because it doesn't matter what they find on the MRIs...  we wouldn't treat it until we got moved anyway.  We did, however, agree to see the neuro-ophthalmologist to be sure there was no damage to the optic nerve.  Thankfully, there isn't a permanent damage...  only some mild swelling that is improving.  

So now we focus on our move in 30 days.  I'm flying to Cleveland next week for interviews, to see our house, and to talk to an insurance broker to get health insurance arranged for Paige and I.  We started this venture 6 months ago knowing we would need about $5500 set aside to get moved.  That number is now down to about $1500...  so we are WAY closer, but not there yet and starting to get nervous.   Especially not having a job in place yet!  We are incredibly grateful for the Visa gift cards and food gift cards we have received to help with the 4 day trip.  

That leads me to prayer requests....

1)  Michael's ICP will stay stable until we get moved
2)  I will find the right job that will offer me the benefits and flexibility I need
3)  That the financial end will come together so that we don't have to stress about GETTING to Cleveland!
4)  That the review team at Cleveland Clinic will partner Michael up with the PERFECT neurologist to help him improve!

As always, much love to all!  

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If you feel led to help, you can donate through the One Day at a Time, One Prayer at a Time  site.  Any funds received will be used to help Michael and his family with the travel costs and medical expenses for all appointments, copays, deductibles, other out of pocket medical expenses, day to day living expenses associated with chronic illness and disease.  If you prefer to send a personal check or gift card, please click the "Contact the Organizer" link on the site for an address.
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Scroll on By.....

This is a note from me...  Michelle. 

I have been criticized a lot over the last few years for being negative...  or "draining" in my updates or posts on Facebook.  I've been told I "share too much".  I had a church member tell me that I was "depressing" and my posts were not good for her spiritual health.  I even had someone tell me that people think I "make it up" because there's no way this much could really be going on.  Just this morning, a family member messaged me that he was deleting and blocking me because it's "depressing".

Michael lives with post-brain injury deficits and severe dysautonomia.  More days than not Michael is unable to leave the house.  He can't drive to the grocery store and get the things we may need because he forgets how to get there or forgets the few things he needs.  He has to have someone with him at every doctor's appointment because by the time he gets home he has no recollection of what was discussed and by the next day he doesn't even remember being there.  He can't take the kids to any of their appointments for this reason as well....  so I do.  He has to use a very specific pill box and things have to remain in order on the medicine shelf or it will throw him off and confuse him, causing missed meds or overdosed meds.  Often Michael forgets what happened last fall leading to the reason he is on a feeding tube and will eat because he wants to...  leaving him coughing for hours and then saying "oh yeah.... now I remember".  More days than not he is in a dark room because of the debilitating headaches and dizzy spells to keep them at least "tolerable" so that he doesn't go into a seizure.  Kids have came home with a friend, introduced him, and 3 hours later he ges upset because no one told him we had company in the house.  We put EVERYTHING on a paper calendar including church days, my work days, when people are coming, when to refill meds, etc. because he can't keep track of things and forgets that something as simple as church that we go to every single week.  There are days where the brain just has had too much and he sleeps for HOURS.  TBI sucks every bit of emotion out of it's victims, leaving Michael apathetic to pretty much any situation around him.  Holding a conversation with him is hard because he will forget the topic, what he's going to say, or just not be able to get his words out.  When we are out in public or at church he puts on fake face so that people won't worry about him or think him any different.  But that exhausts him and when we get back home he will sleep for hours.  He tells me he feels "useless" because he can't work to bring in the extra income we need to survive, can't go and do a huge grocery shopping trip for me so that I can rest on a Saturday, and most recently verbalized feeling useless because we had to ask family to fly in to help after Paige's upcoming surgery because he can't lift her to help take care of her.  We don't go out to dinner.  We don't go to events.  We don't have an intimate relationship.  We don't have a "normal" marriage or family life.  Sure, it's not a cancer diagnosis.  But TBI and all that comes with it is a lifelong, debilitating, progressive disease that changes our life every single day in different ways.  

So, my response to those of you who have criticized me is this...  If a simple Facebook post or a family update makes you feel this way about me...  good.  You are getting a tiny little 10 second glimpse into our every day all day life.  Be thankful that you can click "delete", "block", or scroll on by.  I can't.  WE can't.  We have to face it every single day.

Updates...

Michael had an appointment at the BRAINS Clinic with Dr. Cardenas this week.  He was thrilled with Michael's progress... ESPECIALLY the progress he made with Physical Therapy. He assessed Michael's balance, walking, etc. and he said "Wow! That's a significant improvement!". Those are great words to hear out of a doctor's mouth. He reviewed the report he got from the Neuropsych testing that they did a few months back and compared it to the previous testing from 2 years ago. Overall, fairly comparable. There was some decline in a few areas - the most notable was memory and processing. He said that as we age we ALL decline in those areas and with Michael's past TBIs he would expect those areas to decline a little more rapidly than average. Because Michael has things in place at home to help him in these areas (white boards throughout the house, uses a pill box, etc) he wasn't too concerned. We talked about our upcoming move to Ohio and he said we were doing the right thing. He is going to see Michael will see Dr. Cardenas one more time before we go and then send all the records to the neurologist at Cleveland Clinic.

The feeding tube adventures have been up and down.  

Michael landed in the ER, and then was admitted to the hospital Wednesday. We went after the GI sent us there for a very evident infection in the stoma (the hole) of his GJ tube site to have it cultured and have the placement checked. We figured it would be a quick ER visit to figure out the type of infection and then send us on our merry way with a script for oral antibiotics. Instead, the scans to check placement showed that his tube had somehow coiled up and was actually into the stomach area, not the small intestines where it belonged. They initially said we could discharge home and come back outpatient to have it fixed. UNTIL the ER doctor realized he feeds into the small intestines using the J port because he can't have food in the stomach because it will reflux into the esophagus and spill over into the lungs causing aspiration pneumonia. So... he couldn't continue feeds obviously.... but also couldn't eat. Then she put 2 and 2 together and she suspects when Michael was so sick last week it was likely because it has been coiled and this scenario is exactly what happened.... he aspirated the feeds and what the PCP thought was a simple bronchitis with junky lungs was probably aspiration pneumonia. Next thing we knew she came back in and said he earned himself a hospital stay and surgery the next day!

Michael had the procedure yesterday afternoon to fix the tube and it couldn't have gone smoother. He was in the procedure room about 30-40 minutes, but he actual process of fixing it took less than 5 minutes! The preliminary culture reports were back on the infection by the time we got back... it's full of all kinds of icky stuff. The hospital doctor was confident they could treat it with high dose oral antibiotics (500mg of Keflex FOUR times a day!!!) though, and once they ran about 30 min of the feeds into the tube without any issues they discharged him.

Michael has to follow up with Dr Mohindra (primary) Tuesday morning to be sure the antibiotics are doing their thing, and then follow up with his GI doctor the following week. We have LOTS of questions for that appointment, but we are thankful all is back to "normal" for now!

Things are moving, albeit slowly, for our upcoming move home to Ohio.  The biggest challenge to actually GETTING there is the financial end of it....  we put together our moving budget (moving truck costs, gas for the 3 day drive, hotel stays for 2 nights, food along the way, cushion for emergencies, and deposits on the new house/utilities.  My mouth hit the floor when I saw the total go well over $5000!!!  Aye-yi-yi!  I had a good interview with a SNF contract therapy company and have had a few more calls.  Unfortunately we're still too far out to really get serious about moving forward.  It also looks like we found a house already!  The house is in the school district that Paige wanted to be in and within walking distance, where her Uncle Bill teaches.  We started scoping out churches in the area and the one we've felt most drawn to also meets at that same school.  

Things to pray for are....
- Michael's stoma infection to clear
- That Michael would NOT get "c-diff"...  he had Rocephine 10 days ago followed by 7 days of Levaquin and now a 10 day high dose of Keflex for infection...  he is at high risk of c-diff as a result of all the antibiotics.  No thank you!
- For the financial piece to fall into place for our move so that we can have that worry off our shoulders
- Also, we have a few unmentioned prayer requests for 2 family members who are battling serious health issues

Much love to you all!

21 Days Post Feeding Tube

Today is day 21 post surgery.  The infection has cleared up and we have mastered caring for the tube without the use of any sort of tape.  That is a huge SCORE as he was allergic to everything we tried.  The Interventional Radiologist that did the procedure placed 2 button type things as "anchors" using dissolvable stitches.  They were supposed to fall off within 2 weeks...  but dissolvable stitches don't dissolve on Michael!  Yesterday we called to ask about them as they were still securely in place and the majority of the pain/discomfort Michael was feeling was at the site of the 2 buttons.  The IR doctor told us to get him to the doctor right away to have them removed.  So today we did just that.  Dr. Mohindra was able to clip the stitch underneath and take them off.  He also adjusted Michael's tube a bit so that the disc would sit closer to the skin.  Already Michael is noticing a huge difference in comfort!!  

Michael is up to has max rate/hour for the tube feedings and tolerating that well also.  He's able to be off the tube from about 4pm until about 9pm every day...  which is super nice!  We try to do out of the house things during those hours, but Michael has mastered using his backpack when he needs to go somewhere outside of the off hours.  Last Saturday he even got out without me and went to a softball game with the kids to watch our best friend's daughter and our pastor's daughter.  

As far as nutrition goes - WOW!  I had NO idea how depleted he was in nutrients.  21 days in and he has so much energy and really looks good.  He's able to do things again without getting exhausted and it's great to see him getting out and about.  Our next hope is that the neurologist can get these dagnab headaches under control!!

We feel like we are over the learning curve and surgical hurdle..  and finally in a good rhythm.  We do know he will have to continue to have surgery every 3-6 months because the type of tube he has is the type that has to be replaced that often and can only be done in the hospital.  Prayerfully, the replacement procedures won't be quite as difficult as this first procedure!  But if it is...  we at least know what to expect.  

I sat down this week and started pulling our medical bills that we have paid out of pocket (not what's billed, but what we have actually PAID) so I'd have it ready for tax season.  I was SHOCKED at the amount...  it totals over $18,000 out of pocket for prescriptions, copays, coinsurance, deductibles, and mileage!  We could NOT have gotten through this year without the financial support of so many of you!!!  We sincerely want to thank everyone who has sent us cards, giftcards, checks, and donations through this site!!!!  

We wish a Merry Christmas to all of our friends and family!!

Michael and Michelle

Learning Our New Normal...

Michael's surgery to have his GJ feeding tube placed went well and we are slowly figuring out our new normal.  Figuring out things like taping the tube and timing have been trial and error and there have been a few snafus...  but overall we're getting the hang of it.  We've had friends and family jump in and help with things like IV poles and bed risers, coming to help us get organized, and praying with us...  we are so grateful for each of them!  

As far as needs go, our biggest need - quite honestly - is a financial need.  The hospital Michael had surgery in required prepayment up front or they wouldn't do the surgery, the home health requires our portion to be paid up front each month, there have been way more doctors visits the last few months than normal and we have more coming, normal monthly medical costs of copays, and prescriptions, and I'm certain his 8 day acute neuro hospital stay bill will be coming any minute as well.  My time off of work for each appointment and hospital trip the last month is all unpaid and it's really hitting us in a big way.  Add all this to it being Christmas...  I don't even want to think about that yet!  

We have looked into other state options for him to help with expenses and what Medicare doesn't cover, but he doesn't qualify for anything.  It is hard to even put this out there, but would you please pray about helping financially through YouCaring?  And please pray that things would fall into place so that we can take a deep breath and be able to move on with life without this weighing us down.  

Much love to all and sincere thanks!  

Surgery Scheduled for Tomorrow!

After some scheduling changes and challenges at the hospital, Michael is scheduled to have his procedure to put the feeding tube in tomorrow morning.  We have to be at the hospital bright and early...  6:30am.  Yuck!  

In the mean time, we are still struggling with things coming together.  The dietician was supposed to call at 10am yesterday to put together his formula and feeding plan.  She never called.  I called GI twice and didn't get calls back.  I called GI again this morning only to find out the girl who was helping us is out sick and she made no notes, so no one knows what to do or which dietician she had scheduled to call us.  There are just a LOT of loose ends!!  A lot has to happen between today and 6:30am tomorrow...  dietician needs to call and put together a plan so that the doctor can write the orders and everything to be here before we come home tomorrow!  I'm a control freak... it's a pitfall of mine...  and this mess is driving me nuts because there is nothing I can do!

We're also worried about the financial end.  There is lots of red tape with Medicare and enteral feedings.  Only certain diagnoses are covered.  With Michael...  they don't have a definitive diagnosis.  Some doctors think it's the CTE, but CTE can't be legally diagnosed when someone is alive.  Others think it's an autonomic issue, but no one can confirm.  For now, he is diagnosed with Inefficient Esophageal Motility and Oral Pharyngeal Dysphagia.  The IEM isn't a "covered" diagnosis for Medicare for the formula (it DOES get the surgery, pump, and supplies covered...  but not the formula).  Dysphagia is, but only if he is noted to be absolutely nothing by mouth.  Well...  that's not the case because he can have liquids and SOME soft foods.  

And Michael...  he is quiet and down this week.  Life is about to change...  in a huge way.  We are all just trying to muddle through until we figure it out and get into a new routine.  

Please join us in praying for all of this to be resolved...  for the dietician to get her act together and get a plan in place, for the doctor to get the orders written in time, for the procedure to go smoothly with little pain, for him to be able to come home tomorrow, and for insurance to cover what we need covered, and for the financial burden to be lifted through fundraiser donations so that we can focus on healing.  Any donations that are sent through this site are used for his medical expenses and are greatly appreciated!

If you have a few minutes, send Michael a card or a note to help lift his spirits.  He doesn't use Facebook anymore, but you can mail it to him the old fashioned way to

Michael Lyons
15523 W Central Street
Surprise AZ  85374

We could not be getting through this all without the love, prayers, and financial support of all of you!!! 

A heartfelt...  sincere...  THANK YOU!  

Some Hard News to Share...

Now that our kids and family have all been told, I have an update that is not easy to share.

All of the results from the GI tests Michael had done are back.

- he has a hiatal hernia that is likely not causing any issues... just happened to be found in all the tests
- he has oral pharyngeal dysphagia... meaning his swallow muscles aren't working right
- he has Barretts Esophagus... a "disease" caused by damage to the lower part of he esophagus and it is considered "pre cancer"
- 60% of his swallows are completely failed swallows, not even able to initiate food down the esophagus
- his esophagus is functioning at 10% and is considered essentially paralyzed
- the lower sphincter that opens/closes at the bottom of the esophagus is not closing because it also is effected by the paralysis, thus letting food go from the stomach to/from the esophagus further making the Barretts a complication

All of this is why Michael coughs, has a hard time eating, burps a lot, and now is not eating well at all. He is a very high risk of choking from food getting stuck in the esophagus, as well as high risk of aspiration pneumonia due to food getting caught and then coughed/gagged into the lungs.

The only option he has is to have a feeding tube placed. After a lot of tears, discussion, education from medical staff, prayer, and consideration of the alternative... Michael has agreed to move forward with it. The type of tube he needs is called a GJ tube... it won't go into the stomach, it goes into the small intestines. The reason is, if they were to put the tube into the stomach the formula he is given would still go from the stomach to/from the esophagus b/c that lower sphincter won't close. This puts him at a high risk of the Barretts developing into full blown cancer. No thank you!

So... Michael is scheduled for surgery Friday December 2nd to have it placed.

Now.. let me try to answer a few questions I'm sure some of you will have...

First - We've already done the second opinion thing. Actually more than that! We've had his results looked at by not only his GI doctor, but our PCP, a doctor at Cleveland Clinic, and the neuro team at St. Joe where he is currently inpatient and they are all in agreement that this is the best option for Michael.

Second - Yes.... initially he will be on the pump 24 hours a day continuously until his body heals and until his body starts to tolerate more amounts in less time. The goal is to get him to overnight feeds only at a higher rate/pace... but it takes time.

Third - Yes... he is still going to eat. The only way Michael agreed to it is if the doctors would allow him "soft pleasure foods" and they said yes. It really is a quality of life issue and we all need to respect his wishes for that. He is being taught to take very small bites, chew a lot, swallow, then drink water before taking the next bite. He is aware of his risks, but this is his choice.

Fourth - No, Speech therapy can't help. Speech CAN help with the dysphagia piece... but the esophagus is an involuntary muscle so there's not much strengthening that can be done... AND it's paralyzed.

Fifth - No, we do not know why this is happening and the doctors are working hard for us to figure it out. They are just as alarmed as we are that he has gone from no issues at all in early July to paralyzed esophagus by November. There are many scary things that cause this to happen and we will start knocking them off the list one by one starting after the holidays.

We thank you for your prayers and ask that you pray specifically for some bigger decisions we need to make as a family relating to possibly moving. No decisions have been made, but we are really feeling like God is telling us it's time to be home.

Much love!

Long Overdue Update

It's been a long while since I posted an update here.  The good news part of that is Michael had a great run of about 9 months or so.  He went from having 2-3 seizures a week to just 2-3 a month and even tolerated a month long trip back home to visit friends and family which was SO good for our family!!  

The last few months haven't been so great though, and he's had some decline.  While on our vacation we started noticing that Michael was coughing when he ate.  Initially we ignored it, but a time went on it became evident it was with EVERY meal and sometimes even thin liquids.  Then...  it progressed to liquids.  Several tests later we learned he has a few things going on and no one can pin point the exact problem...  story of his life!  He does have mild dysphagia...  the swallow study showed food is not being pushed all the way down the esophagus and is getting hung up in the pyriform sinus area.  Some swallowing exercises have helped that part a little.  We also learned he has a sliding hiatal hernia and Barretts Esophagus.  He's now on some medication to try to help these things in hopes of avoiding surgery.  Again, the meds are helping a little... but he's still having some trouble.  Most recently he had a pH study and esophogeal motility manometry test done.  Those results are pending and will determine if he's going to have to have the surgery.

Michael's also started having some more seizures...  or seizure type spells.  They are a little different than they used to be and he's had to have a med adjustment that has other side effects.  It was decided last month the best way to handle this is to move forward with the inpatient stay at the Barrow EMU in St Joe Hospital.  He will be admitted Monday November 14th at 8am and is expected to be there 10-14 days.  Day 1 they will stop all his seizure meds...  ick!  The goal is for him to have a seizure while being closely monitored and attacked to EEG so that they can (a) attempt to determine again what part of the brain they are coming from, and (b) adjust his meds to the best dosage with the least side effects.  When he has the seizure they will do their studies and then start adding meds back at slow low doses until the seizures stop.  

If you noticed the date, you likely noticed Michael could very well still be in the hospital for Thanksgiving.  He is insisting we still do our Thanksgiving as planned with close family friends, the Hobecks.  In the evening we will head to the hospital and bring him Kung Pao Chicken....  yes...  you read that right!  He said no WAY is he eating a hospital's Thanksgiving meal...  he wants Kung Pao Chicken and is serious.  We told him he can have whatever he wants!!  LOL!  

While Michael is in the hospital I will be working.  I am now an independent contractor (self employed essentially), so if I don't work, I don't get paid.  Our current plan is that I will work during the day then head to the hospital (which is an hour away) for the evening, and then head home to sleep and do it all over the next day.  The kids will continue their school schedule during the week and will see Michael over the weekend.  We have some freezer meals we prepped, and some friends are doing some too, so that the kids will have meals to eat each evening.  

Please pray that these few weeks will go by smoothly and fast for all of us...  and that the outcome will be positive and helpful for Michael's health!  

When God Doesn't Fix It

Just finished a book by Laura Story - When God Doesn't Fix It - that she wrote after her husband had a brain tumor leaving him with so many deficits similar to Michael's. So much of the book spoke to me in a spiritual sense. But the very end of the book hit me like a ton of bricks on a physical and emotional level. Here's a small piece.....

"Discussing these matters helped me see that I still had other underlying issue and concerns to work through. Was I afraid to leave him alone? Did I not want Martin to work because the logistics were harder on me? Was I scared of him failing in public? And what IF he failed? How would that make me feel?"

.... you get the idea. I read this over and over and over because this could very well be ME writing. Was I afraid to leave Mike alone or let him work because it would be harder on me? Am I afraid that letting him be "normal" and possibly fail would cause ME to feel bad, or guilty, or worse... embarrassed for him? I have to admit.... sometimes... no... a lot of times the answers to these questions is a definite yes and I'm not proud to say that.

I don't think it was coincidence that I found this book and was in the midst of reading it right before Michael decided to go to lunch with John Williams on his own. This was his first outing with a friend i a LONG LONG time!  Part of me started to worry.... What if Michael has a seizure while he's with John? What if he suddenly can't get his words out and goes into an aphasic episode? I had to consciously say out loud - and I seriously did - "So what!". After 3 years of this he knows what to do and he doesn't need me to hold his hand and he NEEDS to be able to manage it himself without me by his side.

I also don't think it was coincidence that I finished reading this book just days before today's appointment with the BRAINS Clinic. I walked into today's appointment with a different outlook. And a different hope for Michael. This is his chance at regaining as much of his life as he possibly can. In turn... it will help US regain as much of our marriage as we can instead of us being in the patient/caregiver roles that we've been in.

One of the things we've talked about lately in church and life group is that God doesn't tell us IF the storm comes He is there for us. He says WHEN the storm comes.... and when that storm comes we should be grounded in our faith, on a firm foundation, ready to take it on and come out standing strong.

God is NOT done with Michael yet... his story is still unfolding!

Finally!!!!!!!!!!!!!!!!!!!!!

Thought I updated here...  but looks like I didn't.  Yikes!

After 3 years of fighting for it...  we FINALLY got the official - in writing - letter stating that Michael's disability was fully approved!!  I can't tell you how much of a relief this is for us!  The part that stinks is the letter says it will be another 60-90 days before he starts seeing regular payment.  Aye-yi-yi!!  Still blows my mind how our system works (...  or doesn't work!).  

As far as how Michael's doing...  he's doing ok.  We were able to enjoy Christmas with our entire family - including Devin - and he even went almost 2 weeks without any sort of seizure event.  What a blessing that was!  Since then he's had a few, but nothing too bad.  I think we're finally learning how to stop them, or at least lessen the severity, when we recognize them coming.  

Barrow got approval from our insurance company for him to be admitted into the EMU (Epilepsy/Seizure Montoring Unit) at St. Joe Hospital to see if they can identify what kind of seizures he's having and where they are stemming from in the brain.  He'll be admitted March 4th for a 7-10 day stay.  He'll be taken off all of his seizure meds 3 days before admission and he will be there for 7-10 days.  We were told "he WILL have a seizure before he's discharged"...  yikes!  Hoping he has it early on so he doesn't have to stay the full 7-10 days or they are going to have one cranky Michael Lyons on their hands!  LOL! 

We are grateful to each and every one of you who continue to love us along this journey!

Michael and Michelle

Starting 2016 With Hope!

2015 was a hard one....  maybe even our hardest yet.  I'm glad it's behind us and that we are starting 2016 with hope....

First, Michael's disability is approved (although we still haven't gotten this in writing).  This is a HUGE relief and a fight that we are glad is behind us.  We do have to wait a few more months before we start seeing the income, but it's coming!!  Praise God for answered prayer!!

Second, his seizures (dare I say) seem to be slowing a bit in frequency.  He even went 2 weeks without a single one!  That's the longest he's gone between seizures in a LONG time.  We hope that this trend continues because it's nice to have "happy Michael" around....  the Michael we see post seizure is not a friendly one.  LOL!  He did have a 72 hour video monitored EEG here at home right before Christmas.  We don't think he had any seizures while on it.....  but won't know for sure until we see the neurologist again January 29th.

Third, he does seem to have a doctor who is not stopping until he helps Michael and that is a great feeling.  Dr. S does have a few treatment plan ideas, but unfortunately our insurance hasn't approved the one that the doctor's are "comfortable" doing despite 2 tries to get it through.  Our insurance did change January 1 so we're going to resubmit everything through the new insurance and hope for the best.  The other option is easier to get approved through insurance, but requires a 3 day hospital stay because it carries a high risk of cardiac complications.  Not good for a man who already is being treated with crazy high doses of Coreg to keep his tachycardia under control.

Fourth, he is FINALLY scheduled for to see the lead neurologist who heads up the B.R.A.I.N.S. clinic at Barrow on March 2nd!  We have been waiting on this appointment since August!!  This clinic offers neuro PT, OT, and ST that is specifically designed to help patients who have had multiple TBIs and may offer some other medications or treatment options to help control the symptoms Michael deals with every day. 

For now, we are leaving this YouCaring fundraiser page up and running.  It's a great place for us to blog about Michael's CTE story and have it all in one place, and it also allows people who still feel led to help financially as it is still a HUGE need for us.  It's a great thing that the disability is approved, but as was mentioned above we still have to wait a few months to start seeing income.  AND, we've had almost 3 years of mounding medical bills and other expenses just trying to live day to day with one income and no outside assistance.

Thank you for your prayers, love, and support!!  

Much love to all!

Michael and Michelle

Disability Hearing is Over

I'm not too sure where to start this update.  Life is just hard right now for so many reasons.   

I guess I'll begin with the disability hearing that was Monday.  We had a pre-hearing meeting with the attorney about 2 weeks ago.  He was super positive because the judge we were assigned to he said is one of the to 3 in the district, really reads what's given to her to review, and really listens.  She has one of the highest disability approval statistics as well.  Somehow this other judge's name came up though - and he was saying that of the 30 judges she is the LAST one we would want, she's harsh, and only approves 28% of her cases!  Well...  Sunday night Mike had a pretty rough night, and  knew already it could be rough.  Then, we got there to find out that they made a last minute change in judges.....  to the judge that we did NOT want!  Our attorney gave us a bit of a pep talk, told us that she never gives rulings in her hearings, and in we went.  Mike initially started out not doing too badly.  Then, about 20 min in he was answering a question she asked him, and he just froze!  Couldn't speak, couldn't move, and had his right hand in the air almost like he was trying to pinch something.  It wasn't a full blown seizure, but it definitely was evident that something was wrong.  After about 2-3 minutes he seemed to start to respond again, but from there on out his answers were a bit odd.  The judge quickly ended her questioning and let our attorney take over.  In the end, she seemed to understand all he's been through and seemed to be sympathetic, but she said "you'll receive my ruling on paper".  Oh gee...  thanks....  ANOTHER 45-90 days which means another 90 days before we start seeing any sort of disability assistance and that's IF she approves it.  Seriously?!?  Another Christmas season struggling, more bills piling up, more stress and tension in the house.  It's no wonder people go from financially stable to broke, bankrupt, and divorced waiting on this process! 

On top of the hearing, I've been sick for the first time in about 4-5 years.  The kind of sick where I had to miss quite a bit of work.  It's different with me being self employed now because I don't get "sick days" or "PTO" when I'm off.  So, I tried to just push myself, and ended up so sick I missed 5 full work days in bed.  That just added to my stress, especially in light of having to wait another few months for this disability mess to finalize.  My job is to support my family...  and I didn't do a good job of that last week.  

Mike's had a pretty time since Monday as well.  He's had 1, possibly 2 more seizure/episodes and has been trying hard to not let it affect things here at hone.   The other thing that he's (we've) noticed is he's making some mistakes he never used to make and it's REALLY bothering him.  Simple things like burning chicken nuggets.  Then this week making dinner in the crockpot, but 5 hours later realizing the crockpot was never fully on.  It's hard....  cooking dinner is one of the things he likes to do around the house to make him feel helpful....  and it IS....  we would eat frozen boxed meals every night of the week if it was up to me - Ha!  

Then Friday came...  that was the biggie that just took me down.  I don't want to get into specifics because it involves Paige and we are committed to helping her move forward.  Watching life for her Daddy change (physically, cognitively, and even behaviorally), especially since his hospitalization last month, has affected her WAY more than we realized.  Friday it all came to a head at school when she finally broke.  The school was very gracious with her and we put some things in place to help her get through the day.  We are also going to be putting her in counseling right away.

Yes, I know that this is just a blink in our journey of life and that God WILL carry us through...  one prayer at a time!

Much love to all!

There is an End in Sight to the Disability Saga

Michael's attorney called late yesterday. The disability judge offered a proposal.... something he said she RARELY does. If we agree to change the date of disability from 8/2013 to 4/15/2014 she will likely approve Michael's disability. My guess is that she is refusing to use the CTE (remember - it can't be officially diagnosed until after death) and she's using the date he was diagnosed with POTS.  It means that we would lose about 8 months of back pay (roughly $11,000), but if we don't, she'll likely deny it and we'll have to wait another long 18+ month through more appeals.  

After a lot of consideration, we've decided to accept her offer. We just want this behind us and we need the stress of this process to be gone.  Unfortunately, we still won't see ANY of his money or regular checks until at least March... so there's still a 3-4 months of complete financial chaos until then. We are leaving the fundraising page up until then in order to help get through. 

BUT... the good news is the end is near!

UCLA CTE Study Update

We FINALLY got the results of the UCLA TBI/Chronic Traumatic Encephalopathy Research Study testing back that Michael participated in back in April. This is just some of what they did and...  Aye-yi-yi...   these are HARD to swallow.  

BESS Balance Test.... It measures postural stability and balance. Average adult scores an average of 11/60, a teenager scores about an average of 6/60. The lower the score the better. Mike scored a 41/60. We knew his balance was bad... that's why he's using a walker now. Just didn't realize it was THAT bad and I'm a therapist!

Reaction Time Test.... Average adult scores 150-200 microseconds of response time as an object d
rops about 30-40cm. Mike scored 370 microseconds and that was with the object dropping 57cm.

The King Devick Test... Measures your brain speed using your eyes for reading, tracking, response to things you see. This is one of the quick tests they do it to NFL players on the sidelines after a big hit to determine if they need to come out of the game. for concussion. Average adult can complete the test in 40-50 seconds.  If a NFL football player 60-80 seconds after a hard hit, it indicates a concussion and they are pulled from the game and put on restrictions. Michael scored 138 seconds!!!! (This and the Reaction Time Test are just reinforcement of why the doctors don't want him driving anymore.)

Koschi Outcome Scale... Measures the potential long term prognosis of a TBI. Michael scored a 4B... "Adult is age appropriately independent but has residual problems with learning/behavior and neurological sequelae affecting function. He should have special needs assistance."

Glasgow Outcome Scale Extended.... a commonly used rehab outlook prognosis score used on patients with TBI, coma, or stroke. Michael scored a 5 Lower..... "Patients have some disability such as aphasia, hemiparesis, or epilepsy and/or deficits of memory or personality but are able to look after themselves. They are independent at home but dependent outside and unable to return to work even with special arrangements"

Their overall summary indicates the high likelihood of having Chronic Traumatic Encephalopathy (aka NFL Football Players Disease)

The upside is these all came today, the day before the deadline for our attorney to turn everything in to the courts in prep for his disability hearing that's coming up.  We actually meet with the attorney TOMORROW to go over the entire case.


Many thanks and much love to all

Good News/Bad News Update but the good news is the BEST!

Good News/Bad News Update but the good news is the BEST!

After almost 3 years, 2 denials, and now another year with the next step, we were notified by our attorney that Mike's disability hearing HAS BEEN SCHEDULED for November 30 at 1:45pm.  The attorney's office is gathering all updated notes and test results  from all of his doctors now.  He will have to see neuro and his PCP to get updated forms filled out on his level of function and seizures.  Once all these appointments are done and the documentation is all received we will go in to the office and sit down with the attorney to talk over what to expect.  The hardest part of it all is that what the doctors all believe Mike has (Chronic Traumatic Encephalopathy) can't be diagnosed until after death, so the court doesn't have to accept it as a diagnosis.  This means that there has to be well documented medical evidence of all Mike's symptoms to support his case and get it approved. 

The bad news is that the new Affordable Healthcare Act certainly hasn't made obtaining insurance easy and we STILL don't have health insurance.  It won't be effective until November 1st and the first month installment has to be paid BY November 1st, and is going to cost us a pretty penny that we don't have.  In addition to that, everything this month is out of pocket for ALL of us...  prescriptions, copays at appointments, etc.  At this point, we have been unable to refill a few scripts because the cost is simply too much out of pocket without insurance coverage.  Scary for sure, but trusting in God for health and financial provision along the way.

So...  prayer requests right now are

- That Mike's doctors will send all the documentation to the attorney in a timely manner
- That Mike's medical documentation will be clear in regards to his limitations and symptoms
- That Mike's disability hearing will go favorably
- Financial provision and help 
- Paige's asthma doesn't decide to act up this month!  (She does have rescue inhalers, just not her daily preventative)

Thank you for the love, prayers, and financial support that has been given!  We have no words for how much it as meant to us to have an Army by our side!  

Michael & Michelle

Status Quo

Things here are pretty much status quo.  

Mike did see the new seizure doctor (new to us anyway) at Barrow in August.  I cautiously say we really liked him because we had a bad experience at Barrow when we first moved here a few years ago.  Dr. Saghal had done his homework and knew Mike's entire situation and then assessed him.  He ended up having his attending, Dr. Schusse, come in to the room to be sure they are doing everything they can.  They aren't going to do any new EEGs as of yet because they got all the info they needed from the EEGs Mayo did.  Dr. Saghal IS referring Mike to Dr. Knievel who is the doctor we were hoping to get into to begin with -so that was a relief.  She is supposedly the best in Phoenix when it comes to headaches due to trauma.  Dr. Saghal also made a referral for Mike to see Dr. Cardenas at the Barrow Concussion and BRAINS Clinic.  So now we just wait on an opening to go in.

Mike's still having seizures fairly regularly.  For the first time ever I was able to catch what happens to him on THIS VIDEO.  (It's also in the photos/videos section of this website.)  I will warn you, it's not easy to watch.  But it gives you an idea of daily life for him.  I sent it to our primary care doctor the next day and his reply was "Wow....  just wow!  I had no idea it was that bad...".  I'm glad we have it now so the other doctors can see exactly what I try to describe and the disability court can see exactly what happens!

I guess the biggest thing that's happening right now is we have to go about 3 weeks with NO HEALTH INSURANCE.  We filled all of Mike's scripts the last week on our old insurance and will be buying our own policy October 10th.  We have to wait because it's crazy expensive to purchase your own.  We do have the option of buying the COBRA through my last employer, but it's even more expensive than buying our own.  We are hoping and praying we can get through the next 3 weeks without needing a doctor!  

So - the prayer requests right now are

1)  We won't need insurance this 3 weeks! 
2)  We get a disability hearing date SOON!
3)  We hear from Dr. Knievel and Dr. Cardenas' offices soon with appointment dates

Much love to all!!
Mike & Michelle

Walk a Day in My Shoes...

(Warning...  soapbox rant ahead)

I'm feeling hurt and frustrated, almost even angry this evening after receiving a message from someone that I am so "negative" and not being thankful for what I do have and it's demonstrated by what I post on Facebook.  So, I went back through the entire month of August and re-read my posts....  all 61 of them (wow I post a lot LOL).  Of those, there were 4 that I might consider negative (i.e. today's post about disability) and 2 that were prayer requests.  If those 6 posts upset you or led you to believe that I'm not grateful for what I do have...  I'm sorry!

I guess it leads me to ask a few things....

•  Have you ever watched your husband try to run around or play with the kids and end up in an absence seizure and unresponsive for minutes at a time...  just for trying to be a Dad?
•  Have you ever had to drain your bank account at the 11th hour just so you'd have enough cash to get you through to the next paycheck, knowing that overnight something would clear and leave it in the red?
•  Have you ever not filled a prescription that you desperately needed so that you can pay the athletic fee your child needs to participate in a sport that he/she loves?
•  Have you ever gone to church, gatherings, etc. that were meant for couples over and over alone because your loved one is recovering from a bad seizure the day before?
•  Have you ever not been able to drive to your child's sporting even that he/she loves because you can't afford the gas money?
•  Have you ever watched your child be the patient during a full code in a hospital room?  (and contrary to the belief of a few I do NOT enjoy it!)
•  Have you ever put off appointment after appointment thinking it would fit into the next check's budget?
•  Have you ever held your spouse as he/she cried at night because "this isn't how it's supposed to be...  I'm supposed to be able to work and support you"

I could go on and on....  this is only a list of a FEW of the things that I HAVE done over and over again over the last few years (and some even the last few days!).  But I do still wake up and give thanks for the food on our table, the roof over our heads, and every breath that we take!  And I do still give thanks that I have my husband by my side.  I love my family more than anything and I will keep pushing forward each and every day, come what may!

So unless you've walked a day in my shoes...  please don't judge me for having a bad day.

OK...  off my soapbox now.





Want to know how to help or follow updates on Michael....  click HERE.

What Brain Injury Survivors Want You to Know

This is a really good article Michael posted this week on "What Brain Injury Survivors Want You to Know" from the August 16, 2015 Health Care Solutions Plus Site.  Michael felt like it was pretty spot on and "a good read" for anyone who has interactions with him, or interactions with people who have similar issues.  The original article can be found in the link at the end.




I need a lot more rest than I used to. I’m not being lazy. I get physical fatigue as well as a “brain fatigue.” It is very difficult and tiring for my brain to think, process, and organize. Fatigue makes it even harder to think.

My stamina fluctuates, even though I may look good or “all better” on the outside. Cognition is a fragile function for a brain injury survivor. Some days are better than others. Pushing too hard usually leads to setbacks, sometimes to illness.

Brain injury rehabilitation takes a very long time; it is usually measured in years. It continues long after formal rehabilitation has ended. Please resist expecting me to be who I was, even though I look better.

I am not being difficult if I resist social situations. Crowds, confusion, and loud sounds quickly overload my brain, it doesn’t filter sounds as well as it used to. Limiting my exposure is a coping strategy, not a behavioral problem.

If there is more than one person talking, I may seem uninterested in the conversation. That is because I have trouble following all the different “lines” of discussion. It is exhausting to keep trying to piece it all together. I’m not dumb or rude; my brain is getting overloaded!

If we are talking and I tell you that I need to stop, I need to stop NOW! And it is not because I’m avoiding the subject, it’s just that I need time to process our discussion and “take a break” from all the thinking. Later I will be able to rejoin the conversation and really be present for the subject and for you.

Try to notice the circumstances if a behavior problem arises. “Behavior problems” are often an indication of my inability to cope with a specific situation and not a mental health issue. I may be frustrated, in pain, overtired or there may be too much confusion or noise for my brain to filter.

Patience is the best gift you can give me. It allows me to work deliberately and at my own pace, allowing me to rebuild pathways in my brain. Rushing and multi-tasking inhibit cognition.

Please listen to me with patience. Try not to interrupt. Allow me to find my words and follow my thoughts. It will help me rebuild my language skills.
Please have patience with my memory. Know that not remembering does not mean that I don’t care.

Please don’t be condescending or talk to me like I am a child. I’m not stupid, my brain is injured and it doesn’t work as well as it used to. Try to think of me as if my brain were in a cast.

If I seem “rigid,” needing to do tasks the same way all the time; it is because I am retraining my brain. It’s like learning main roads before you can learn the shortcuts. Repeating tasks in the same sequence is a rehabilitation strategy.

If I seem “stuck,” my brain may be stuck in the processing of information. Coaching me, suggesting other options or asking what you can do to help may help me figure it out. Taking over and doing it for me will not be constructive and it will make me feel inadequate. (It may also be an indication that I need to take a break.)

You may not be able to help me do something if helping requires me to frequently interrupt what I am doing to give you directives. I work best on my own, one step at a time and at my own pace.

If I repeat actions, like checking to see if the doors are locked or the stove is turned off, it may seem like I have OCD — obsessive-compulsive disorder — but I may not. It may be that I am having trouble registering what I am doing in my brain. Repetitions enhance memory. (It can also be a cue that I need to stop and rest.)

If I seem sensitive, it could be emotional lability as a result of the injury or it may be a reflection of the extraordinary effort it takes to do things now. Tasks that used to feel “automatic” and take minimal effort, now take much longer, require the implementation of numerous strategies and are huge accomplishments for me.

We need cheerleaders now, as we start over, just like children do when they are growing up. Please help me and encourage all efforts. Please don’t be negative or critical. I am doing the best I can.

Don’t confuse Hope for Denial. We are learning more and more about the amazing brain and there are remarkable stories about healing in the news every day. No one can know for certain what our potential is. We need Hope to be able to employ the many, many coping mechanisms, accommodations and strategies needed to navigate our new lives. Everything single thing in our lives is extraordinarily difficult for us now. It would be easy to give up without Hope.


http://healthcaresolutionsplus.org/lost-found-what-brain-injury-survivors-want-you-to-kno

17 Years Ago Today.....

(Chase MacKenzie at 1 Year Old)

Chase turns 17 years old today, at 12:25pm Eastern time to be precise! What a day that was for all of us. Grandma and Grandpa Casto made the drive to Bloomington for your birth - we were so glad they were there!

Chase was determined to be born that day regardless of the planned c-section! I woke up that morning and went into labor before we even left for the hospital. Created quite the stir when we got to the hospital considering I HAD to have a c-section! Little did we know that was just the beginning of the day's chaos.

After all 9 pounds 6 ounces of Chase was delivered via c-section things got pretty ugly for a while. I remember being in the recovery room and Mike being with me. Then all the nurses scurrying around, Mike being pushed out of the room, and then rushing me back into surgery. At one point, after losing several pints of blood, the nurse went out to tell Mike and my parents I was bleeding bad and they weren't able to stop it - the outcome was looking very grim. Fortunately, by the power of God, they were wrong.

I don't remember anything after recovery until the next day when I was told what happened. Mike looked at me with tears in his eyes saying I scared them all and I was never to do that again. He was terrified of losing me and being a single father of 3.

I spent the next week in the hospital and have enjoyed every minute of watching Chase grow up! He's struggled with more medical problems than any child should have to endure, yet is always smiling from ear-to-ear!

Chase - you bring so much joy to our lives! We're so very proud of how far you've come and we know that you will continue to reach for the stars!

We love you Buddy!

Mom and Dad