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!