Sunday, April 4, 2010

Megan's Story

March 2002 Megan was experiencing shortness of breath and weakness & was diagnosed with Myocarditis. This is a virus that attacks the heart and causes heart failure. She was immediately put in ICU and we were told that if the meds didn't start working soon we could loose her. They worked and the last 7 1/2 years she has been living a new norm (no sports or extraneous exercise) with the help of an assortment of heart medicines.


November 30, 2009 For the last week Megan had been experiencing periodic shortness of breath and weakness. It was hard to sleep and she was very tired. On Sunday after Thanksgiving, we decided it was time for help. Diagnosis was congestive heart failure with a heart ejection fraction of 15-20. A healthy heart is an EF of 50 and anything below 36 is considered serious.


December 2, 2009 Megan was transferred to Barnes-Jewish Hospital and put under the care of Dr. Ewald and his transplant team. After many tests they determined her EF was at 10-15. This definitely made her a heart transplant candidate, but they wanted to try to strengthen her heart with meds first. As a safety measure, they put in a defibrillator to shock the heart if needed. We finally brought Megan home Dec. 11th.


Christmas and New Year HolidayMegan had many good days and some difficult ones; mostly dealing with shortness of breath and weakness. Overall we had a great holiday and made many special memories.


January 3, 2010 Megan started experiencing nausea and was not able to keep any food down for 5 days. They changed some meds and she started feeling better. She was able to go back to work 3-4 hours a day for about a week.


January 23, 2010 Megan is unable to keep food down again. She is also loosing a lot of weight.


January 26, 2010 Megan is back at Barnes. Tests show her veins and liver are full of fluids. Her heart EF is now at 8. She is in major congestive heart failure and must be on continuous IV meds. The meds have stopped her nausea and she is keeping her food down. This makes her look and feel better, but she quickly tires out and has her ups and downs throughout the day. Our only choice now is a heart transplant. Final tests and procedures will be done next week to place her on the 'Transplant List'. She will remain in the hospital during the initial waiting period.


Megan is a trooper. She is so positive about this whole experience and knows that God is going to take care of her. She is in His hands and trusting Him to carry her through.
TRANSPLANT LIST (explanation)Barnes is the only heart transplant hospital in the Mid-America area. Dr. Ewald is the head physician of the transplant team and decides who gets what heart. Beside the obvious of a perfect match, there are other criteria that determine who is at the top of the list.



They are: 1A - Patients on continuous IV meds and in the heart cath lab

1B - Patients on continuous IV meds

2 - All others

Other factors in every patient are age, health other than the heart, size, and blood type.
Megan is scheduled to have a heart cath on Tuesday, February 2, and will be placed on the list at that time. This way she will be considered 1A, but for only 14 days. Then she will drop to 1B unless it is necessary to do another heart cath.


Megan's age, health (other than her heart), and size give her the best odds of getting a heart. Her blood type is 0+. You would think that is good since it is the most common, but that means there are more people needing 0+ hearts so they are hard to get.




Feb. 1, 2010 Megan has had a good two days. Sunday was family time and today friends. She has done well but gets tired after awhile. Her spirits are very positive and she is trusting God each day. Tomorrow she will have the heart cath which makes her a little anxious. She has to remain alert enough to answer questions, which means she can hear everything that is going on in the room. Not a good thing. One of her favorite doctor's has offered to do the procedure during lunch with no students observing. This way the talk can be limited to just the questions they need to ask her. We certainly feel loved here at the hospital and everyone is treating Megan as if she were their daughter. We are so blessed. Meg will be in ICU up to 24 hours for this procedure. No visitors Tuesday or Wednesday.


Feb. 2, 2010 Megan was taken to the heart cath lab twice today & procedure was delayed. 'No Room in the Inn' (ICU). Megan is extremely tired today and a little short of breath, so God knew she needed to rest first. We also are still waiting for approval from the insurance company to go ahead with a transplant. Everything is rescheduled for tomorrow around 1:00pm. Pray for an open room in the ICU and grace on behalf of the insurance company.


Don't ever tell me God doesn't answer prayer. HE JUST DID IT! The insurance company has agreed to the transplant. This is one more 'Ebenezer stone' for our 'remembrance' jar. "Hitherto hath the Lord helped us?"



Wear RED on Friday, Feb 5th! It is American Heart Association "National Wear Red" day to speak out against heart disease in women.


Feb 3, 2010 Megan did well during the heart cath and is now in ICU for up to 24 hours of watch. They are testing her on and off meds & with different meds to see how she does. All the numbers taken tonight will determine the amount of meds and care while we wait on a heart. She is officially on the transplant list. We will wait, pray, & trust God that all will happen in His way and His timing.


Feb 4, 2010 Megan's numbers were better than expected, so she is going on the transplant list as 1B. Hearts have to be an exact match, so the Dr. says being on 1A or 1B doesn't make a lot of difference in the scheme of things. The great news is that she will be able to go home on an IV pack Friday or Saturday. Kathie and I will be trained to deal with this but must admit, we are a little nervous about it. The wait for a heart could be days or months. It will happen in God's time.


Feb 5, 2010 Megan had some special visitors today all the way from Texas. Byron & Brennan Sharon drove 15 hrs just to say 'hey'. They are on their way home in a snow storm, so pray for their safety. We will not make it home today because Megan's head has been pounding since last night. They are afraid it may be a reaction to the new meds. They just took her for a head scan. Still praying we can make it home tomorrow.


Feb 6, 2010 Our Megan is feeling much better this morning. Headache is gone and we are waiting on the homecare nurse to hook her up and send us home. We KNOW the wait could take HOURS, but we are praying for MINUTES. We are thankful, that although she is in bad need of a heart, she is able to wait for it at home in her own bed. Kathie & I will sleep better, too.


Feb 7, 2010 Megan's first evening at home was awesome. All the kids were home & cousin Trevor from KC. Mandi made a big pot of soup and we just enjoyed each others presence. The night was not so great. Megan's IV pack kept beeping. Home care had to come out at 5am & we are waiting for them again at 11am. Hopefully they get it to work. WE DO NOT WANT TO GO BACK TO THE HOSPITAL.


Feb 9, 2010 Thank you God for a warm house on this bitterly cold night. Thank you for allowing us to enjoy it instead of being in a hospital room with all those beeps and interruptions. Megan is doing well at home & the IV pack is doing its job. Thank you for your prayers. We are still believing for a miracle.


Feb 11, 2010 Megan had a tough day yesterday: very tired and signs of water retention. But thanks to answered prayer, today was much better. She even went on a short trip to Target with her mother. You know, they have to shop! God is GOOD and we praise Him for His daily watch over each of us. Thank you, 'Family of God', for keeping us in your prayers.


Feb 16, 2010 Megan had a pretty good week-end. That means she was able to get up, walk around the house a little, eat with us at the table, and enjoy some good movies together. Yesterday, I could tell she wasn't feeling well because she just laid on the couch and slept a lot. Today she is much worse. She is retaining fluids causing her to be very weak, pale, and throwing up. She is also dealing with sinus and cold symptoms. Pray that her body will release the fluids and that her cold, sore throat, and congestion will go away.


Feb. 17, 2010 Megan is still very weak today and struggling with keeping her food down. Thanks for your prayers.


Feb 18, 2010 Megan has had a rough day. The nurse came to the house and suggested going to our primary Doctor to have him check her cold symtoms. He admitted she had an infection but wouldn't do anything because he was concerned about her heart issues. We are waiting now for the heart doctor, Dr. Ewald, to call and give us direction. We are afraid we will be back in the hospital by tomorrow. We need a healing touch tonight.


Dear God, I pray that You will release the fluids in Megan's body tonight so she can breath easier and keep her food down. I ask that this sinus infection would be cleansed and taken from her instantly. I know You can do it. Megan needs Your healing touch right now. Thank you, Father. We are believing for answered prayer.


Feb 19, 2010 Thank you Jesus, Megan is feeling some better. Blood tests show low Potassium & high white blood count. This indicates an infection. With such a weak heart, they need to make sure, so more blood tests tomorrow. We are praying that the counts will be better and infection gone.


Feb 21, 2010 Megan was feeling much better yesterday & I pray she will be even better today. Her potassium is still low, but the white blood count came down. We have to wait until Monday for the results on the infection. Right now we are just happy she feels & looks better. Thanks for the prayers & we are trusting God for a good week. To GOD BE THE GLORY!


Feb 23, 2010 Another good day! Megan went to the doctor. There was no infection; her weight loss (down to 103 lbs), lack of appetite, and vomiting are all symptoms of heart failure. We know God is in control and will trust Him each day for a new heart. 'I BELIEVE.'


Feb 26, 2010 Megan woke Thursday with a #10 pain in her right shoulder. Not sure what caused it, but it is pretty much gone today. Her pains and symptoms keep us and the doctors guessing. God knows and we trust Him daily for wisdom and strength in caring for Meg, and the obvious, HEALING.


Mar 2, 2010 Megan is having a good week. Thank you God, for giving Megan a break from all those difficult days. Every good day is special to us and we are trying to make the best of each one. Keep those prayers coming. We still need a heart. Love you all.


Mar 6, 2010 We are very grateful for a good week. We had a couple of small bumps, but overall Meg is having some good days. Kathie & Meg made a trip to the nail salon today: that makes any woman feel great. In all the good we have a request: Pray that Meg's appetite improves. She is down to 99lbs. Love you all, God is GOOD!


Mar 11, 2010 Meg and I took a little spin around town last night. The weather was gorgeous and it was good for her to be out and enjoy it. We are thankful for another good day and trusting God for more of them.


Mar 13, 2010 Today is Kinsley's birthday party at Mandi's & Kyle's. We're going to take Meg, but she has not been feeling well since Friday morning. No appetite, weak, and nauseated. We praise God for a previous good week and will trust Him to get her through this weak spell.


Mar 17, 2010 Meg has had an OK week; not terrible, not great. She is a trooper with very little complaining, but I know she is tired of the wait. Please Lord, send our miracle heart soon.


Mar 19, 2010 God, Meg needs your touch tonight. She is feeling so badly and can't keep her food down. Show us what to do to make her feel better. She is your child, God, and we beg You to take care of her tonight. Thank you for you healing touch.


Mar 20, 2010 Megan was pretty weak when she got up this morning, but we have managed to get a protein enhanced fruit drink down her as well as a few bites of a sandwich. She is looking better and so far keeping it down. Thank you for your prayers and comments. They are such an inspiration.


Mar 22, 2010 Thank you, Jesus, for a good day. It is amazing the difference 12 hours can make. Megan woke this morning hungry and ready to eat. 3 meals today and they are still down the hatch. Makes me realize how much the rest of us take for granted each day. Thanks for all your prayers.


Mar 24, 2010 Megan's good days were short-lived this time. She started feeling full (fluids) last night and it has continued today. When she feels this way, she can't eat much because she knows it will be revisiting us soon. Praying the booster pill kicks in, gets rid of the fluids, and allows her to feel better soon.


Mar 27, 2010 Megan has continually grown weaker in the last few days; just sitting up or talking exhaust her. She has nibbled on a few things today, but most has made a return visit. God, Meg needs your loving arms around her tonight. (And while You're there, please heal her.) "When I am afraid, I will put my trust in Thee." Ps 56:3


Mar 29, 2010 Still no improvement in Megan. We are taking her to the doctor tomorrow. We are praying he will allow her to have a nutritional IV at home.


Mar 30, 2010 The doctor would not agree to the nutritional IV; too much chance for infection. He did change some meds with the hopes that she will improve. Our immediate prayer is that Megan's appetite will improve and that she will be able to keep food down. "Now to Him who is able to do exceeding abundantly beyond all that we ask or think..." Eph. 3:20


Apr 1, 2010 11am The home care nurse found Megan very weak today and is sending her back to the hospital. Right now she needs to gain strength so that if a heart became available, she would be strong enough for the surgery. We are praying for strength, for healing, and a new heart. 'God is able!'


4:30pm Meg is in the Cardiac Care Unit getting additional meds to help her heart beat strong enough to send blood to her vital organs. She is feeling some better but not where we need her to be. Thanks for all the prayers. God is watching over us.


Apr 2, 2010 Update on Meg...compared to when we came to the hospital yesterday at 4pm, she is GREATLY improved. Thank you, Jesus. After IV fluids and additional meds, she has had jello and apple juice, and is feeling somewhat stronger. As you pray for us, pray that we will be able to "bear witness" that knowing Christ is worth more than life.


Apr 2, 2010 Megan has gotten worse throughout the day. They are getting ready to do a procedure to try to give her more time. We need a heart TONIGHT. PRAY!


Apr 3, 2010 2:10am Megan came through the procedure well. It immediately doubled the blood flow from the heart. The next few hours are critical as they watch her leg to make sure the tube through her vein does not cut the blood flow to her leg. Pray that the vein will open wide and allow blood flow through her entire body. S...he is at the top of the transplant list; we need a heart ASAP. 'God will provide.'


5:04am Sitting by Meg's bed. She's been peacefully sleeping since about 3am (I'm guessing on the time here - the hours just bleed into one another) I see 11 IV bags flowing. Sometimes it feels like I'm watching all this happening and it's not really real, that I will wake up and life will be "normal" again. ... Romans 8:26.



2:13pm Meg has been taken to prep for surgery. They will be opening her chest to put in a LVAD (left ventricular assist device). This is temporary and will function as the left ventricle of her heart. The concern is the beginning failure of her liver and kidneys. A big danger in the surgery is bleeding. Please pray for God's mighty touch during this time. She will still be at the top of the transplant list; a new heart is needed urgently. Meg assured me just before she left..."I have a calm all over me."


5:25pm Megan's surgery went well. Blood flow is at a normal rate. We will not be able to see her for another hour. She will be in an induced sleep for possibly two days allowing her to rest and the liver and kidneys to return to normal function. This will give us another week to find a heart. God, Megan is in her hands now. We trust You with her and are believing for a miracle.


Apr 4, 2010 8am Happy Easter. Meg has had a good night; kidneys & liver almost back to normal. Praise God. We believe God is getting her ready for a New Heart. I am thankful for science & God's gift of knowledge to Meg's physicians. The nurse said this technology was not available a few years back & our baby would have not made it last night. We are living a miracle right now. Keep the comments coming; they so encourage us. Some have asked if they could donate blood for Megan. Although donors are welcome, their blood will not directly help Megan.


6:00pm A family in the waiting room just lost their loved one; a 23 yr old man who received his new heart on Thursday is up walking and doing well; Megan is waiting for her miracle. Xray shows extra fluid around her right lung. They're inserting another chest tube now to reduce the fluid. Still believing for an Easter miracle.

Apr 5, 2010 7:45am God, I am pleading with You to send a heart for my baby. I know You have your arms around her and helping her to do well on these machines, but she needs a heart; a healing of her heart. God, I beg you to send a heart today. But God, You know we have given her to You, and most of all we want your will to be done. "I will praise the Lord at all times." Ps 34:1
"The Lord is close to the brokenhearted; he rescues those whose spirits are crushed. The righteous person faces many troubles, but the Lord comes to the rescue each time." Ps 34:19-20

19 comments:

  1. We are praying for you and believing in a miracle for Megan and for you and your family to have peace through such a stressful time.
    We got to see Carla Hall today, Chris flew the family in for the day for Easter. She is a trainer for nurses for all of this equipment that Megan is using, she asks that you utilize her if you have any questions or just need to chat.
    May the Lord be with you and keep you...

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  2. I believe!! Praying for you all!!!!

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  3. Praying and trusting the Lord for a miracle! Megan is an amazing women and I trust when this storm passes she will be a witness to so many miracles. May God watch over and continue to bless your family. Happy Easter!

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  4. Megs I love you! Stay strong, Adam and I are thinking about you every second!

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  5. Meg's my family and I are praying for your miracle. God bless you and your family.

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  7. I believe we serve a God of miracles!

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  8. Pete, Kathy, and all. The Lord will prevail, it may seem even more hard at this time as it is more urgent than it ever has been, but the Lord has big plans for Meg. Although hours have turned in to what seem like days and days in to weeks, you have 1000s praying for her safety and recovery and prayer is a very powerful tool.

    ''Do not fear, for I am with you; Do not anxiously look about you, for I am your God. I will strengthen you, surely I will help you, Surely I will uphold you with My righteous right hand.'' Isaiah 41:10

    With Love and Prayer,
    - Brian Dillingham

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  9. We are praying & believing God for your miracle! Psalms 61:2 - Forrest & Kelly Byerley Corpus Christi, TX

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  10. I am on my knees for Megan's heart. Praise God that she has such a loving, supportive and faithful family!

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  11. Your family is amazing and has truly blessed thousands of families and God will return those blessings to your family....My prayers are with you all day everyday. It truly moves me how strong your family's and faith is and encourages me in the meantime. My thoughts and prayers are with Megan and your family

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  12. Lindsay said...
    I was listening to the radio this morning at work and as I opened this blog the words were "i've seen miracles just happen, silent prayers get answered, open hearts become brand new." Praying a continual miracle and a heart!

    April 5, 2010 6:09 AM
    jimnleah said...
    Dear Wayne and Kathy, Kyle Rogers just sent an email to us to ask for prayer for your beautiful daughter. If we had know sooner she would aready be in our prayers. My heart breaks for you.....how very hard it has to be to watch your sweet daughter suffer. Please know she will be in my prayers. I have asked Jesus to keep her on my heart and to give me the kind of heart for her that would cause me to pray without ceasing. Be assured that every time she crosses my mind I will be intercedeing for her....and all of you as you are going through this difficult time. When I look at my own blonde haired daughter it will remind me of yours and a prayer will be on its way. Also.....I am asking Jim to annoint me on Megan's behalf this week at church. Rest assured you are loved and prayed for. Always your friend,

    Leah Heincker/Sukraw

    April 5, 2010 8:58 PM

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  13. Wayne, I don't know if you remember me, but I went to high school with you. My niece Ashley, who received a heart transplant five years ago this summer, told me about your daughter and this blog. Miracles do indeed happen everyday, and I am praying for a miracle for your Megan! God bless you and your beautiful family.

    Barb Downs Brooks

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  14. I don't know you but I learned of Megan's situation through a friend and want you to know that I am praying for a miracle for you all. I am praying for His Grace and Healing for your family.
    Kim
    Macon, MO

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  15. My dear friends. I have been monitering from Texas. I am praying so for the heart for Megan. Your family has been a wonderful example of strength to me and mine. The students and staff here at CCS are in pray for all of you. He is our Rock and our Salvation, I know on Whom you folks lean. My God bless and Keep you in His tender loving Heart.

    Robert Cook & Cypress Christian Schools

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  16. "The things you fear are undefeatable, not by their nature, but by your approach."....Inspirational Quote by Jewel. Keep your head up and remember that God is on your side. Our prayers are with you okay.

    Kimberly

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  17. Our God is mighty to save ,Iam praying . keep your faith ,God is good !

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  18. I dont know her at all, but i pray with all my heart that she will get better and god is amazing he will help.

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  19. Dear Megan,you do not know me but I have read your story,wanted you to know that you are in our prayers,God can work miricles and he will if we put our faith and trust in him.We have to tell ourself,God it's in your hands,not my will but thine be done.God is a mighty God.I don't know you but in God I love you and our prayers are with you

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