Nutrition

Posted: July 2, 2012 in Uncategorized

Another trip to the ALS clinic last week  revealed to my neurologist what I knew to be true:  I have been losing too much weight.  To my family the reason was obvious…swallowing has become difficult and choking has occurred frequently.  Choking even once is too much…for me to endure and for my family to watch.  I think it might rank up there with one of the scariest feelings ever.

The good news is that my appetite is strong and food tastes delicious.  The bad news is that the path to get to my stomach is weakening.  Did you ever realize how many muscles are required to actually chew and swallow food before it even enters the esophagus?

I have already made many changes, the first of which was allowing my food to be cut for me.  Choosing soft foods, but not too soft (lettuce was eliminated long ago) and adding gravies or sauces to make everything moist are other tricks we discovered.  Finding the right kind of beverage is another challenge.  Water is vital, but also the easiest liquid to aspirate with.  Thicker drinks are better, but after enjoying something like a milkshake, my speech is really garbled and difficult to understand.

Going out to eat is so much of an effort, it’s almost not worth it.  I can’t even think about trying to carry on a conversation, as all my concentration must be on the task of eating.  And heaven forbid if someone makes me laugh while eating – that’s the cardinal sin!  We actually had to make Parker move to another booth at a Wendy’s recently because we couldn’t stop laughing.  Also outlawed by my wife are eating in the car and eating alone.

So between the neurologist, dietician, speech therapist and Dena,  we decided that it is time for me to get a feeding tube.  Lest you think of the stereo-typical end of life, hooked to a machine…think again.  The PEG tube (if you are curious, watch this video)  is placed during a simple outpatient surgery and the tube will hide nicely under my shirts.  I am not going to stop eating by mouth and I pray that I never have to do so.  However, for now, it will give me added nutrition and make sure I am hydrated.  My energy level has been low the last few weeks and we believe there is a connection.

So on the day we publish this post, 7/2/12, I will be receiving my PEG tube.  Please pray for me that it will go as simply as it has been explained.  For 24 hours after the procedure, I will not be able to eat (except clear liquids) until a follow-up appointment to make sure it stayed hooked properly.  By Tuesday night, I should be feeling full and happy.

This whole new dependency for my food reminds me of the children of Israel.  For 40 years, as they wandered in the wilderness waiting for entrance to the promised land, they depended on God delivering them manna and quail (Exodus 16).  Just enough for each day, with no more and no less.  I am sure there were some people quite content about it, who did as God instructed and gratefully took what they were given.  Likewise, I am sure there were others who felt angry and frustrated with their plight.

I am going to have to make a choice daily as to which way I want to be.

“As for me and my house, we will serve the Lord.”  Joshua 1:8

Advertisements
Comments
  1. We appreciate being updated. We will pray specifically today about the procedure. We so appreciate you and your family.

  2. You are amazing! I love your illustration at the end- and the daily challenge to choose your reaction to it. I am praying for you often. Sometimes I laugh just thinking about how much fun you are and what a great attitude you portray. I am inspired by your words and hope to make the daily choices you desire as well—to receive gracefully everything the Lord has for me without anxiety, anger or doubt. Bless you Patrick! The Lord continues to use you…even out of the pulpit! As I was looking at video of Dena’s family photo session, I spent the most time looking at you….your demeanor of joy and peace was SHINING THROUGH!!!
    Sue Lowe

  3. Joe & Gail Asaro says:

    Patrick, Dena and family, our prayers are with you during this leg of the race God has set before you. Your strength and focus on Christ is an encouragement to us all. God has set the course, we are all to faithfully run, so run hard today. Be faithful to our King who loves you more than we could imagine. He is our strength, our rock, in Him alone do we hope.

    We love you all,
    Joe & Gail

  4. Sharon Roosen says:

    Dear Patrick, You don’t know me and I have never met you, although I have been following your blog for a while now. My nephew and niece saw you speak a while ago and shared it with me. You see my mother-in-law has ALS and I am one of her caregivers. She was in denial and was refusing to go to the doctor, So as we read your blog we learn from you. She has recently come to terms with it and has recently gone to Dr. Newman. He has helped quite a bit.

    Our recent hurdle, which has changed quite significantly this week is her swallowing. As I read your blog this morning I am praying for a favorable outcome with the feeding tube as I believe that will be our next step. I pray that the tube provides the nourishment that your body needs an lessons the worry that the swallowing brings.

    God Bless you and your family. I will continue to pray for you and thank you so much for sharing your story. I don’t think you know how many people you are helping.

    Sincerely,
    Sharon Roosen

  5. janet says:

    We are continuing to pray. Love you so very much!

  6. Nancy Spalding says:

    We are continuing to lift you up in prayer. So grateful to know that you are still laughing with your family. Thank you for your encouragement to us.

  7. Kathy Ray says:

    Praying for you today (as we do every day) that the procedure will go well. For God’s presence to be especially near you to guide and comfort. We love you!!! Dorman & Kathy

  8. Tracy says:

    Praying every time you cross my mind (and that is often). Will pray today specifically for a smooth procedure and recovery. Blessings and continued laughter to you and your precious family.

  9. Carl & Lori Reichanadter says:

    We will be praying today for the procedure. Special blessings to you and your family Patrick.

  10. Mary Rodgers says:

    Thank you for the update Patrick. We continue to think of you and pray for you and your family. Hopefully, the eating tube will be a good thing for you.
    Mary Rodgers

  11. Steve Miko says:

    Patrick,

    I just wanted to encourage you with this passage from 2 Corinthians 5:1-5:
    “For we know that if the tent that is our earthly home is destroyed, we have a building from God, a house not made with hands, eternal in the heavens. For in this tent we groan, longing to put on our heavenly dwelling, if indeed by putting it on we may not be found naked. For while we are still in this tent, we groan, being burdened—not that we would be unclothed, but that we would be further clothed, so that what is mortal may be swallowed up by life. He who has prepared us for this very thing is God, who has given us the Spirit as a guarantee.”

    Praying for you!!
    Steve

  12. Cheryl Marie says:

    Praying for you today friends. Love from the Freemans.

  13. Chris says:

    Praying for you today as you have the procedure, and then recover. Praying for Dena, P, and P also. May God bless you with peace and strength as you continue to trust Him.

  14. Jane Miniard says:

    I am praying that all will go well with the feeding tube procedure, and will continue to pray for your entire family. You’re an inspiration with your wonderful outlook on life!

  15. Delphine Warbington says:

    Praying for all of you from an empathic perspective. Although I once lived this and remember each of these things you Blog Patrick and Dena with extreme clarity. I praise God at how you seem to be healing my thirty one year old scars. I did not have Christ in my life then to help me through, but now you are leading me down a path of healing that takes my breath away and is restoring my soul… Psalm 23. Thank you Patrick, Dena, Paige and Parker for taking the time to be so open and honest and also for sharing your pain and joy with us. I have walked this road and I know the stones that are on the path, but what I didn’t know then and still don’t always understand is how POWERFUL and Gracious our God is and always will be to either give us glasses to make the path seem clear and smooth for us to travel down, or He can clear it. Whatever He wills. But we have to be ready to accept it with Grace, that is what I pray for daily…
    In His precious Name… Del Warbington

  16. Ted Williams says:

    Prayed again for you today. Much love to you and your family.

    • Mandi says:

      Patrick and Dena,
      I am praying for you and I am so sorry you have to go through this. I know God is teaching you a lot and I am sure everyday or moment you must choose to think biblically. I will pray that your mind and emotions will be set on God and His Word. I love the humor you add to your posts. I am so glad there are times of laughter for your family and I will continue to pray for that as well.
      Love you
      Mandi

  17. Viv and Daryl Poole says:

    Patrick & Dena,
    It was interesting to view the video of your feeding tube. Our 4 year old grandson who has cancer , leukemia, is just traumatized about taking medicine. Parents, doctors and nurses with lots of experience have been unable to get him to take it orally so they finally had to put in a gastric tube and get a special formularily to get that medicine in him.
    He’s doing better nowu
    I think of you often as I do I pray for you. The changes have been many and drastic for you and your family. Dena, are you taking off this summer

  18. Keith and Marilyn Kaynor says:

    We’re continuing to pray for you all as you face this together. We will especially pray for Patrick as he goes through this procedure and adjusts to a feeding tube. We will also pray for the grace to make the choice to accept it by faith and continue to trust….

  19. Jana Braden says:

    We continue to pray for you and are all inspired by your faith and dependence on God.

  20. Jacki Stevens says:

    Bless your heart! We are praying for a successful procedure and that you will be feeling really full and satisfied soon. Love you.

  21. Simple thoughts: praying and thankful for the testimony of your and the family, Pat. Sherry and I think of you folks often.

  22. Bev Stewart says:

    Pastor Pat, Dena & family. ‘Stay strong and know He is Lord.’ For a word of encouragement, Glenn had to have his esophagus and stomach remade 4 years ago. He had a feeding tube to get him built back up. He had lost almost 100# and today we feel very blessed for every day. We continue to hold each of you up in our prayers! God bless you all. The Stewarts

  23. Mary Alice Stahl says:

    I pray that God will fill you up as desired and that if you can still have pine apple upside down cake I am willing to oblige and Dena I am here for you anytime you just want to talk or to vent or to cry on my shoulders they are quite big sister love to all

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s