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!