Each day becomes a struggle

Hi all,
Another long day.  We got home about 6:30pm.  A full day of tests, interviews and evaluations.  In a nut shell, Ty has lost 10 more pounds this past month, his lung function has dropped to 20%,  his blood oxygen level is 52% and he’s going to go back in so they can implant a small camera in his esophagus to check for any reflux(?) problems.  They want to make sure his esophagus is strong enough to prevent him from vomiting.  Don’t want any food in a set of transplanted lungs (Infection is a killer).  He goes in tomorrow for a molecular scan (?) to watch his digestive functionality then next week they will give him a tracer and watch how his lungs distribute the air he breathes.  After all that there will be 2 more tests and 2 more interviews in about 4 weeks.  One of those tests will be of the heart.  It’s compression strength is a little low.  They want to verify this more accurately and if it’s too low, they will consider a heart transplant as well.  After that is done, his case will go before the transplant team for them to determine his eligibility.  Of course that could all change if his condition continues to worsen.  His disease usually progresses in steps.  A big drop and then a plateau, then a big drop and a plateau, and so-on.  In the mean time he will be getting a new oxygen generator as the one we have only outputs up to 5 liters per minute.  He needs one that will output 15 liters per minute.   He will also be doing pulmonary rehab in an effort to keep the rest of his body strong and fit.  Time for a workout.  Sounds kind of fun but in actuality it will be brutal.  He is having a very hard time now with coughing attached where he cannot breath that it will be very hard on him.
On another note: I stated last post about so news that I would tell you about.  Well, it is interesting that our Pastor this past Sunday started a series on prayer and he started out by stating that there is no real power in prayer.  To which I 100% agree.  If there was power in prayer, you could pray to Allah, Buddha or a rock and get answers.  The power is in the one in whom you are praying.  That is, if you are praying to the one, true God.  Only in Him is there power.  I tell you this to tell you this:  As I commute to work every day, I have about 30-35 minutes each way and usually spend the time praying.  Praying for my family mostly as well as sharing with Him the desires of my heart.  I have often told the Lord how I feel about having to exhaust all our financial recourses on Ty’s health over the past 15+ years and wish I had something to further Joshua’s gift of knowledge by paying for his ongoing education.  Well, Karen proceeded to tell me a couple of weeks ago about a phone call she had with someone who will remain anonymous.  And how they were asking about Josh and where he was going to school and what was he going to study and did he receive any scholarships?  Karen filled them in on all the details about OSU and studying Chemical Engineering, etc.  And they proceeded to tell her that they have been praying about this and would like to invest in Joshua’s future and pay for his schooling for the first year that is not covered by scholarships.  Now I ask you, is there power in prayer?  NO! But there is power in the One who made this all happen.  The One to whom both myself and the other party have been praying to.
God is so good.  He is so faithful.  His mercies are new every morning.
Keepin’ the faith,
Regis

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Comments

11 Replies

Terry Wells
By Terry Wells
Just stopping by for a quick "I love you guys"!!!! Abundant prayers still coming your way, my friends!
Love and Peace,
Terry
Sandy Daron
By Sandy Daron
Hi Regis,

I am sorry Tyler continues to grow weaker. It is good news that he may be in a plateau soon. I pray the PT will help him grow stronger.

I trust and pray in the ONE, TRUE God that Tyler will be accepted for transplant!

AWEsome news for Joshua!! What a blessing!!

Love ya,
C.O.L.E.s Foundation
(Caring Openly, Loving Eternally)
www.colesfoundation.org
www.kidsunitetofight.com
www.colespages.org
Email: sandy@colesfoundation.com
Kris Dillenbeck
By Kris Dillenbeck — last edited
Continued thoughts and prayers for Tyler. I'm thankful and praising God for answered prayers for the blessing upon Joshua.
Terry Wells
By Terry Wells
I will be praying to the one true God!!!!!!!!! May our precious Jesus continue to bless you and carry you along your journey.
Love and Peace,
Terry
Joyce Nosker
By Joyce Nosker
I'm trusting in the mercy of the Lord and the answers He DOES give us when we pray.
Praise God for the answer to prayer for Josh's education fund!

The wait for being eligible for the transplant seems so long, as you well know, but the tests ahead are certainly needed. Praying for all of Tyler's needs, as well as all your family.
Janet Simmons
By Janet Simmons
I am praying for Tyler.
Janet Simmons
By Janet Simmons
I am praying for Tyler.
Kathleen Curtis
By Kathleen King
Continuing to pray for Tyler and all of your family as he goes forward in this battle. I will continue to lift him up in prayer daily for Jesus' sweet mercy.
Gayl Elam
By Gayl Elam
Praying the continued testing goes well and praying the heart test will go well.
God Bless you Tyler and family.
Hugs from Gayl
C.O.L.E Prayer Team
www.colesfoundation.org.
Judy Hostetler
By Judy Hostetler
Continuing to pray for Tyler. You are all so dear to us and we will continue to beseech the Lord on your behalf. We will pray specifically for favorable test results and a quick decision to proceed with transplant. Praise the Lord for His provision at all times....for Joshua and Tyler.