Friday, April 30, 2010

4/30  10:14pm

Meg. looks. so. good! If you didn't know better, you'd wonder when you looked, why she was in the hospital. Today - lots of exercise and walking (her comment: I didn't know when I got my new heart that I wouldn't be able to walk.) Tonight, reminiscing and laughter with family, as we filled Meg in on lost moments, hours & days. "The Lord is good to those who depend on him, to those who search for him." Lam.3:25  ~Kathie

4/30 8:12am Sitting here with Megan watching her sleep so peacefully and reading old FB posts. (Meg is on life support...; Struggling for every breath...; Meg woke up during procedure & bleeding...; We have a heart...; The heart is beating...; Sleeping beauty woke today...) God, I am so thankful for all you've done and are going to do in our lives as we continue to trust you each day for continued healing for Megan.  

Thursday, April 29, 2010

9:14pm  It seems every dept. in this hospital has something to teach us before Meg gets to go home! All good, but very tiring. More walking trips today. Met a man that had his heart transplant 14 yrs ago. Met a sweet mom whose 4 month old daughter just rec'd her new heart this week! Dinner brought by loving friends (as it has been EVERY night!). (See continuation of post in my notes.)  We have so many people to thank for walking this journey with us, that if we start, we will surely leave many unlisted.  You know who you are - so many, many of you - friends we know and friends we just haven't met yet.

To help you pray for Megan:
1.  Blood clots - she has 4 or 5 small ones that are being treated.  Not a huge worry, we're told, but they will watch this.  Blood test being done to see if she has a predisposition for forming clots.
2.  Swelling - lots.  Normal after surgery and because of the clots.  But uncomfortable and "heavy".  I'm not sure we have to settle for "normal"; I think God just might be able to take care of this, too!
3.  Lungs - (pleural effusion) extra air in pocket around lung (these are my laywoman's terms!).  Not getting worse, so will just wait for it to dissipate.  If it would get worse, a tiny chest tube would have to be inserted to remove the air.
4.  Strength - is increasing every day, but more is surely needed.  She has lost all muscle tone, and one of the meds increases big muscle wobbliness.  
5.  Emotions - while meds are being adjusted, one especially, will cause emotional highs and lows.  This will probably be one of the most difficult for Megs to deal with!  Again, I don't think that all this HAS to be, but am trying to be ready for anything!

So....borrowing words from a new friend of mine...I will "keep listening; keep asking for guidance and direction; keep praying; and keep giving thanks for all the wonderful gifts that we know that we have received, and the others that we are too dim-witted to know that they exist.  Thank you God, for everything.  Hebrews 11:1 is shining through with all its glory.  It was the certainty to know that what we hoped for was waiting for us ahead--we just couldn't see it---but He did."

4/29 8:15am Megan continues to feel well, but tests yesterday show 4 blood clots from being inactive so long. They are small & treatable with heparin, but with needing a biopsy every week of the heart she can't stay on heparin because of bleeding. Pray the blot clots dissolve on their own & wisdom for the doctors. 

Wednesday, April 28, 2010

4/28 2:30pm Megan's doctor says her recovery is the 1 to beat. The feeding tube came out and one chest tube is going tonight. Megan was interviewed today by Kay Quinn (Ch 5) and the hospital video team. Channel 5 will air tonight. Meg is going to bed for an afternoon nap. I may join her in the next bed.
See Megan's full interview and the television version with Kay Quinn at

Tuesday, April 27, 2010

4/27 6:25pm The heart biopsy was 1A (that's awesome) and the EF was 55-60% (double awesome). We serve a 'Mighty' God and HE makes no mistakes. Megan walked over 1100 ft. today and is eating baked chicken for dinner. Pray for chest drainage to stop, nutrition levels to rise, & that she will be able to get in & out of bed by herself. 
4:01pm  What a busy day it's been for Megs - but she just keeps on keeping on! Sitting in recliner. First walk, 460 feet. Bath. Lunch. Echocardiogram. 2nd walk, over 700 feet. Physical therapy exercises. Was told she could go back to bed for a nap, but she wants to stay in her chair. This girl wants to go home  ~kathie
4/27 1:20pm Sorry, I'm late with posting: busy day. Walked 420ft, doctor visit, therapy, and lots of meeing new people on a new floor. She had a lot of pain last night but now in control. Still no word on the biopsy, but we'll assume no news is good news. Prayer request: her left chest tube is leaking fluids & her nutritional level is still low from weeks of no or poor eating. They still are amazed at her progress.

Monday, April 26, 2010

9:46pm  Meg and her dad had the day together, while I went home to do laundry, pay bills, and spend some special time with baby girl Kinsley - what a treat! I returned to see Megan eating like she hasn't in months! Praise God for an increased appetite! We're in the step-down unit, and they rolled in a bed for the mom! Roomies!  ~kathie
4/26 8:25pm Megan has been moved to step-down. Much smaller rm, but private. She walked twice around the unit with very little assistance. Then she went for the biopsy (results tomorrow). It did show her heart preasure as 3 months ahead of schedule (remarkable). Didn't get to the echo. Having some pain tonight due to the biopsy. Pray for painless, restful sleep.
4/26 8:50am Megan is doing well this morning and getting ready to start her daily activities: Walk around the floor; heart biopsy (pray for NO rejection); echo (pray for a good Ejection Fraction), lunch (pray for appetite to return), and move to step down (if a room becomes available). Recovery is in fast forward.  Praise God!

Sunday, April 25, 2010

11:33pm  Returning from "Come to the Fire" early Nov., we discussed transferring our faith to the next generation. I pray that Megan's story will play a part in making that happen. "Let every generation tell its children of your mighty acts; let them proclaim your mighty power." Ps 145:4. God still moves mightily today.  ~kathie

4/25 8:10pm Megan has had a great day. Spending another night in the ICU because her bed in the drop down unit was taken. This is good because we like our room and nurses in the ICU. We should move tomorrow and we are sure we'll meet some more great staff there. 'This is the day the Lord has made, we will rejoice and be glad in it.'
4/25 11:50 Just took her walk around the ICU. Usually on the first walk they just go past a few rooms and come back. With a little oxygen assist, she made it all the way around (approx. 360 ft; length of a football field). Again, they are amazed & we know it is God. Thank you, Jesus.
4/25 10:50am Megan is sitting up waiting on assistance to take her first walk down the hall. She is feeling great (under the circumstances) and beginning to eat pretty well. Off oxygen for 24 hrs & going to take chest tube out today. We are making progress. Will probably go to step down unit tonight. God has performed many miracle this week and we are extremely blessed and grateful. 

Saturday, April 24, 2010

4/24 7:00pm What an exciting day for Megan! She was surprised by her own strength, and was able to walk with assistance to the window to view her visitors. They thought they would move her to the step-down unit this evening, but decided to wait until tomorrow - for which we're grateful. Praise God for His continuing healing power in her life.

4/24 10:00am  Been standing by Megan's bed since before 8am helping her to sloooowly drink some apple juice and eat a muffin (thanks Debbie) and some pudding. Also every 15 min we do 3 inhales on her Airlife. She is resting now & getting ready to stand and then sit in the recliner for a few hours. Getting stronger each day. Thank you, Jesus.

Friday, April 23, 2010

4/23 9:05pm Although the blood clot is a concern, it is not uncommon and the doctors do not feel it will cause any problems. They will be watching her closely and taking more tests next week.  Megan is pretty comfortable for now and ready for a good night's sleep. Thanks for the prayers and hope to see many of you tomorrow at 1pm from the window of Meg's room.
4/23 4:20pm  Prayer warriors: The heart rate has gone down, but they did find a blood clot behind her knee. They are giving meds to try to dissolve it.  Pray it won't move and will be dissolved quickly. God is continuing HIS Miracle.
HEARTFELT CELEBRATION AT FOREST PARK.  Many of Megan's friends are getting together to celebrate Megan’s miracle on Saturday (tomorrow), April 24th at 1:00pm (RAIN OR SHINE). We will meet on the hill between the ICE RINK & Barnes/Jewish. Megan will be able to look out her window and see everyone. Please wear RED and bring bubbles is you have some. We want to form a large heart, make a lot of noise and praise our God for this great miracle.  PS: This is a surprise for Megan! Everyone is WELCOME!
4/23 3:00pm Two prayer requests. Megan's left leg is swollen and they are concerned about a blood clot. Also, her heart rate is a little high at the moment and nurse is trying to find the cause. Not a big emergency, but nothing is too small or big for God.
4/23 2:45pm  Megan has had a very busy day. X-rays, standing (with assistance) for 3 40sec periods, sitting in the recliner, changing iv ports to ward off infection, eating (pudding, jell-o, and fruit), and on and on. Needless to say, she is worn out, but in good spirits and pain has been minimal. One doctor called her a 'miracle' today, but we knew that already. 'We serve a MIGHTY MIRACLE WORKING GOD!
4/23 8:03am  Haven't talked with Megan yet this morning, but she seems to have had a peaceful rest. They had her on her feet yesterday, but could not stand alone. Her legs are very weak from 23 days in bed & minimal use before that. Praying for more strength today. 'Meg can do all things through Christ who gives her strength...' Phil 4:13

Thursday, April 22, 2010


Sitting beside Meg's bedside, reading her beautiful emails from friends and strangers, reading loving FB messages, and watching her smile. With lots of help today, she stood for a few, sat in the recliner for 2 1/2 hours. She is doing her breathing treatment every 10 minutes, and just finished leg exercises with the nurse. World, here she comes! I sing praises to Your name, oh Lord...     ~km

4/22 8:30pm The x-rays continue to get better: No procedure needed. Thank you God for healing and for friends willing to lift our girl up in prayer. Megan is exhausted and needs restful, painless, and uninterrupted sleep tonight. Two weeks ago the drugs gave her nightmares which makes her afraid to sleep, so pray that she will feel God's presence and have sweet dreams.
4/22 12:00pm The x-ray was clearer, but they aren't convinced. Doing another this afternoon. Other than that, Megan is feeling pretty good today.  Doing her breathing treatments every 10 minutes keeps us and her busy. They want to get her standing by this afternoon.  
4/22 10:25  Pain in under control now. Midnight x-ray shows air around her left lung. We are waiting on second x-ray to determine if a chest tube needs to be inserted. Pray that this x-ray will be clear. We will let you know how God answers. 

Wednesday, April 21, 2010

4/21 7:10pm Although Megan looks beautiful, she is in a lot of pain. Please pray that she will get relief soon so she can get good rest tonight.  Don't mean to bother you with more requests, but every time you all go to prayer, God answers, so why not ask. 
If you would like to send Megan an email you can do so through the Barnes/Jewish web site., select Patients and Visitors, click on Email a Patient
Thanks to all for their continued prayers and words of encouragement.
4/21 5:30pm We are praising God for Megan's improvement throughout the day. Doctors & nurses are shocked, but we know the source of her improvement. God is still performing His miracle on Megan. Thank you Jesus for allowing all of us to be part of a modern day miracle.

My lips keep smiling, my feet keep dancing, my mouth keeps praising, my hands keep lifting, my soul keeps rejoicing in God, our Redeemer and Healer! Megs is sitting in a chair...Mandi "did" her washing is next.                A m a z i n g ! ! !  ~km

2:25pm  Still doing well!  My heart is so filled with gratitude to our Father, Who loves my child even more than I do.  She is of first request - brush my teeth - then, need a bath.  Love it, I do.  They are transporting her right now from the bed into a recliner.  Can you believe it?  Of course you can!  ~km

4/21 10:50 am Sleeping Beauty is awake! Her blue eyes still shine and her smile is as sweet as ever. Prayers helped, I know, because this extubation was smooth - no panic or anxiety. Praise Jesus for even the little things. More updates throughout the day.

Sleeping Beauty is awake! Her blue eyes still shine and her smile is as sweet as ever. Prayers helped, I know, because this extubation was smooth - no panic or anxiety. Praise Jesus for even the little things. More updates throughout the day.  ~km

4/21 8:50am I ask one of Megan's doctors last night if he could be her 'prince charming' and wake her up with a kiss. He just laughed & didn't think that would work. So we are beginning the medical process again. She is already more responsive than yesterday. Pray that she will not panic, be at peace, feel God's arms around her, and wake up easily.

Tuesday, April 20, 2010

4:11pm  Sleeping Beauty just does not want to wake up; maybe she is waiting for her prince! So, sedatives are back to let her rest until tomorrow, when they will try again. We are not to be concerned, we're told. Continued prayers are certainly appreciated. We're leaning on His everlasting arms
4/20 12:45 Sleeping beauty is having a difficult time waking up. They are not too concerned but hoping to get a response soon. Pray that Docs will have wisdom to wean her off the right meds to allow her to wake soon.
4/20 8:30am From the mouth of the over night nurse, David, "'Remarkable', a patient who has had two assist devices & transplant in two weeks & doing this well is 'remarkable'". I said, it's 'God' and they agreed. They are beginning to wake her now so pray the extubation goes well and Megan wakes feeling like a new woman. Praise God! Check for several updates since Sunday on Megan.

Monday, April 19, 2010

4/19 5:20pm Equipment and IV bags have been disappearing from Megan's room all day. They are amazed at how well she is doing. The plan is to wake her in the morning & allow her to breathe on her own. God has been faithful and honored the prayers of his people. May we all continue to give Him the praise as Megan travels her road to recovery.
4/19 9:10am Megan had a good night. Vitals are all in a normal range; Pupils and all 4 limbs are responding well. She is still in an induced sleep while they lower med to see how the heart reacts. So far, so good. Still a small infection from Sat. episode, but better. Docs are pleased with her progress. "Man does procedures, but God does the healing." This miracle is on-going so keep praying for a full recovery.

Sunday, April 18, 2010

4/18, 3pm. Megan is in her room, surgery went well. The doctor has a few concerns. A blood clot was found at the base of the aorta and they believe they removed it all but there is a small chance that a piece broke off. Please pray that God has and will continue to protect her from any complications. Thanks for your continued support with prayer-You are all awesome!
4/18 12:35pm Megan had a new beating heart. To God be the Glory, great things He has done.
4/17 10:15am Megan new heart is being implanted at this moment. Pray for guidance of the surgeons hands, for controlled bleeding, and for God's arm to be around Megan.
4/18 8:10am Megan is doing well. They are removing her defibrillator while her new heart is in transit. Arrival of heart is due around 9:15. Pray for a safe flight for her doctor & heart, God's hands on surgeons, God's comfort for Megan, complete success and healing through this Miracle surgery, and peace and comfort for the donor's family.
4/18 4:40am Had to place all of the organs from the donor before the heart could be harvested so we have a delay. Prep is scheduled for 5:30am & surgery about an hour later. It should take 4-6 hours. She will be in an induced sleep for two+ days after surgery. Meg is anxious: pray for peace and comfort & that Jesus will hold her. God is AWESOME!!!

Saturday, April 17, 2010

4/17 10:00pm 'PRAISE GOD FROM WHOM ALL BLESSINGS FLOW'. We went from "Megan is too sick to receive a transplant" to "WE HAVE A HEART" in 12 hours. Only God can work a miracle like this. Thank You Jesus!!! Surgery around 2-4am. Pray that Megan will receive it well and continue to pray for the donor family.
9:20pm  Tonight's most important prayer request:  Please pray that Meg's body would be free of any infection that would prevent her from being ready should a heart become available. Our mighty God is able to do abundantly more than we can ever ask or think.
4/17 6:50 pm Meg is starting to improve. Temp is coming down. White blood count is still high. Her breathing is easier, but only with an oxygen mask. Mandi (her sister) is combing Meg's hair and trying to make her feel better. We have walked numerous times around her bed today, claiming VICTORY in JESUS name. We believe a miracle is on its way.
4/17 3:00 Had to do emergency procedures to stop infection and help her to breathe. Having a hard time stopping bleeding and is on a temporary respirator. Had trouble during procedure & Meg woke. They allowed Kathie & Mandi to sit under sanitary cloth and calm Meg. We are definitely calling for God's miraculous touch today.

HEAL ME O LORD - Don Moen (With Lyrics)

Family of God, this is my prayer for my baby today. Turn your volume up and cry out in worship to Him and claim healing for Megan today.I am the God that healeth Thee - Don Moen

Upload this so that my mom can hear
4/17 8:25am Breathing a little better after Lasix and machine adjustment.
4/17 7:50am Megan is again fighting for every breath. They are calling in the team of doctors to see what can be done. Pray for wisdom for the doctors, peace for Megan and us, and that God will put His arms around her right now.

Friday, April 16, 2010

Sorry, it was Channel 5, not 4.
2:00pm I am praying and marching around Megan's bed seven times. If it worked for Joshua, it can work for Megan.

6:00pm The procedure went well and Megan is feeling some better.  Still not as good as Wednesday, but better than last night and today.  Thanks for all the prayers.

7pm (from Kathie)

After Meg's procedure...Her: Did you ask them to pray like I said? Me: We did. Did you feel Jesus? Her: I DID! Me: What was it like? Her: He held me and squeezed me. Me: Tears and praise.

9:00 Channel 4 is setting up at NCCS to put the prayer vigil LIVE on the 10pm news.  Please pray wherever you are with all of us; if you can make it to the campus, that would be fantastic.  Let's storm heaven together expecting a miracle.
4/16 10:00am Meg is struggling for every breath this morning. Docs in and out. Going to have to do a bedside surgical procedure early this afternoon to relieve fluid around her lungs & heart. Also white blood count is rising which could mean infection. God, it is so hard to watch Meg fighting for her life. Please, God, we need a miracle SOON.

Thursday, April 15, 2010

 (Kathie's FB post) Mixed blessings. Today has been a little rough for Megs. Difficulty breathing and super tired. Special friends visit in waiting room. Love shared. Incredible emails and FB messages that enourage our hearts, move us to tears, and make us laugh. Hug your family members and friends; you never know when it could be your last opportunity. Thanks for your continued prayers; God uses them to give us peace & strength
The Moss family will be praying in the waiting room while Kathie and I are praying in the room with Megan during the Prayer Vigil. We are grateful to all for your love and prayers during this time. We are believing for a 2010 MIRACLE that cannot be denied. God is ABLE!
Prayer Vigil for Megan Moss

Location:North County Christian School
845 Dunn Rd.
Florissant, MO 63031
Time:10:00PM Friday, April 16th
Wear Red and bring your own candle or light.
4/15 11:30 am Megan is sleeping well this morning between interruptions. Good news is that insurance has approved the newer-smaller LVAD. We are thankful for this, but still praying for God to heal her heart or provide a doner before Monday morning. We are believing, praying, and EXPECTING A MIRACLE! To God be the Glory!

Wednesday, April 14, 2010

4/14 1:15pm The hospital had Kay Quinn from News Channel 5,, a NBC affiliate, to come and interview Megan about her wait for a heart. We are praying that God will use the story, as He did with Channel 4, to not only encourage people to become donors, but also share our faith in Christ. Be watching tonight at 5, 6, and maybe 10.
4/14 10:20am While Megan is sleeping this morning, hundreds of family & friends are fasting & praying for her healing. We are again in awe of the 'Family of God' and the way they are lifting Megan and the family up in prayer. As her dad, I don't even know how to pray sometimes, but I do know that Megan is God's child, too, and as her Father, He will do what is best for her. I'm trusting You God, to take care of our girl.

Tuesday, April 13, 2010

4/13 5:00pm The Doc tells us our time is running out and that Megan is still very critical. Next step is an internal LVAD which comes with physical, emotional and insurance issues. We need a HEALED or NEW HEART by Monday. We are asking God's Family to follow God's lead as you pray on Megan's behalf for a MIRACLE. "Ask and it shall be given..." Matt 7:7
4/13 12:30pm Thank you for all the birthday wishes. I am overwhelmed by the love and prayers going up for Megan. They are lifting our spirits and making this tough road a little easier. We are all believing and praying that her heart will come soon. Megan is feeling better today, but still has a lot of pain in her chest. God, we are ready for that miracle heart.

Monday, April 12, 2010

9:20pm Megan is exhausted tonight after a very busy & emotional day: Sitting in the shuttle chair, therapy, extreme pain returning to chest, heart rate in the 150s, description of the artificial heart and all of its hardware, and tears. Megan is SO ready for her new heart. Please God, send it tonight. 'I will rebuild you...' Jer. 31:4. Megan received 75 emails today through She loves them.
10:00pm Tonight Megs is talk, talk, talking. It's so great to see the Megs we know in there! I heard today from a dear friend who is putting together a golf tournie on Megs' birthday, May 22. Contact Bret Freeman at

April 12, 2010
(From Kathie on 4/10) Last night, before going to sleep, Meg asked her Aunt Sharon and I to sing her song. So we stood, holding hands and sang, "Lord prepare me to be a sanctuary, pure and holy, tried and true. And with thanksgiving, I'll be a living sanctuary for You."

10:00am Megan had a good night and is eating more and more. Hospital staff are amazed at her spirit and come by for an 'up-lift'. God is definitely working through this experience to call his children back to Him. They have extended her time on the LVAD for another few days. God, you know our need and we trust You to answer in Your way and time.

Sunday, April 11, 2010

4/11 10:05am Megan didn't get much sleep last night but did eat most of a stl bread cin crunch bagel. They now have her in the shuttle chair for 40 min. Dr. Wang is pleased with her progress. All are anxiously awaiting a new heart. We are so blessed by the outpouring of love from friends & family. "I'm glad to be part of the Family of God."

Saturday, April 10, 2010

4/10 9:00pm Megan has managed to down some solid food today. Just a few bites, but it is the first in 2 1/2 weeks. Thank you for the many emails sent to Meg through the hospital web: They are a blessing and encouragement. Go to the web site; select Patients & Visitors; click email a patient. Megan Moss, 56 ICU, Rm 12.
4/10 11:00am Meg is resting & Sheryl & I are enjoying our view of Forest Park. It reminds us of How Great our God is. He has created all things & yet He cares about Megan. God, we plead with you today, to bring healing and continued peace to Megan as she gives you praise in ALL things. Megan's prayer is, 'Lord, make me a Sanctuary of Praise...' He is definitely answering that prayer. Drs, nurses, everyone is in awe at Megan's spirit through all of this. God will prevail.

Friday, April 9, 2010

4/9 3:00pm Blessings out pour for Megan today. 4 nurses decided she needed a better view and took 30 minutes to move her & all equipment to a suite overlooking Forest Park. Best view in St. Louis. Then at 1:30 she got a call from Danny Gokey from American Idol. He so encouraged her and lifted her spirits. Thank you nurses and Danny for being 'Jesus' to Meg today. She needed it.

Thursday, April 8, 2010

4/8 I forgot to tell about our excitement yesterday. We were all in the waiting rm while they changed 1 of Meg's IV ports when we heard a boom & all power went out. No emergency lights in the waiting rm & Kathie & I were frantically feeling our way out of the rm to get to Meg. The life support equipment was only off for a couple of seconds but it was 30 sec before the generator turned the lights on. All patients were fine.
4/8 1:00pm Megan slept better last night between 3 bouts of nausea. No vomiting though. They just lifted her out of bed and have her sitting in a chair called the shuttle. It is an amazing chair that moves in all positions to help with muscle mass and bed sores. If you would like to send Meg a note you can email her at Highlight Visitors and Patients and then click email. They send your email on a nice card right to her room. Her room number is 56 ICU, Rm 1.

Wednesday, April 7, 2010

4/7 10:05pm Megan's heart rate is still a little high (120s-130s) but she was able to keep a 6oz milk shake, bowl of chicken noodle soup, and frozen grapes down all day. PTL. She remained in the exhausted mode, but overall had a good day. Thank you Jesus for this day and we pray that Megan will be able to sleep through the night. Unless, of course, You want to wake us up for a new heart.
4/7 9:25am Although Megan's numbers are pretty good, she is having a difficult time sleeping. She is very disoriented, confused & shakey from being so weak. The family appreciates all the visitors, but please do not expect to see Megan. She must get her rest. Pray that her heart rate goes down and that she can start eating. So far everything reappears about 30 minutes later. PRAYING FOR A NEW HEART!!!

Tuesday, April 6, 2010

4/6 9:00am I woke about 5am and went to check on Megan and they were beginning to wake her. The process took a couple of hours, but by 7:20 she was breathing completely on her own, oxygen levels were perfect, and she was quietly communicating with us. God is SO GOOD!. She will remain on the LVAD while waiting on a heart, but it is so good to see her eyes and smile.

Monday, April 5, 2010

7:10pm Megan is about the same tonight. She does look a little better because of her fabulous nurse. She decided Megan needed a little 'lady' time and gave her a spa treatment: Lotion, painted nails, body rub, and hair-do. Kathie and Aunt Shar got in on this, too. We are so thankful for the care Megan is receiving at Barnes. Drs, nurses, fellows, everyone has been wonderful.
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

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