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