Hard Recovery

So grateful beyond words for all the texts, cards, flowers,gifts, meals, visitors etc. over the last few weeks. This has been a really rough recovery.  We did not expect things to go this way and are nervous heading into the next planned surgery.  Yesterday we were advised by my surgeon to go to the ER to get checked for infection because I was developing flu like symptoms and not getting better. After spending seven hours in the ER they did not find anything. Their best guess is that its most likely a reaction from all of the heavy antibiotics I have been on from my last two surgeries.  I had a rough morning today but by the afternoon I finally started to make a turn for the better. I even got out for a walk and enjoyed the fresh air and the warmth of the sun. Praise God!! We are hoping this continues.  Please would you all pray that I would feel good enough to have this surgery on Tuesday.  They will be implanting a defibrillator.  It’s a much needed surgery and I’m ready to get this all behind me and on the other side of things.  I Cannot even express to you how grateful I’am for an amazing church body who just enters in to the pain of others in the most beautiful of ways.  It’s overwhelming how beautiful it is to be so cared for.  Please forgive us for not responding to texts or messages right away and know that we want to, we care, and we are so thankful.

Information overload

So I have been told over and over in the medical community how special I'am, how rare my condition is, and how I don't fall into a regular category. My case is unique they say.  Unlike any other they say. Isn't that true of us all though. I mean We all are special because we were created in God's image. Each one of us a true miracle. Our lives have purpose because of our Maker. We were born with a purpose.  Because of the Lord's hand and new advances in medical technology I have gotten to be a wife, a mom, a friend, and share Jesus with so many. 

Twenty years ago my heart journey started. I started passing out. I had several fainting episodes. Thanks to great insurance I was able to have a myriad of tests in a total of two weeks ultimately leading them to discover that I had complete heart block. The only way to keep me alive was to put in a pacemaker. So crazy to look back at all of that and see God's faithfulness over the years. How he has sustained me. They put my first one in at the ripe age of 19.  I would go on to have two lead failures which led to emergency surgeries with new leads placed in my heart and new pacemakers. Making this a total of three. Because I'm fully paced 100 % of the time my battery is only good for 6-7 years. I had my fourth pacemaker surgery 2 1/2 years ago.  Hope your all keeping up😏 it's a lot.  

This last year I have had a ton of pre Ventricular beats and small Ventricular Tachycardia beats.  That small pacemaker in my body records all heart activity. It's unbelievable technology. It amazes me. They have adjusted my pacer with no luck of stopping the episodes. After my 20 min short g- tube surgery my heart was in distress causing my cardiac enzymes to be elevated. They are still not clear why. Like I said I was only under for 20 minutes.  Two weeks later I had a Ventricular Tachycardia episode that caused me to black out for a few seconds. At my Cardiologist appointment they picked up from my pacemaker recording that the V-tach episode lasted for 11 seconds at over 200 beats. Super Scary!! How you all doing? Still with me?  You all are going to be heart pros after this. The doctor grew concerned at this point and had to take everything into account.  My muscular dystrophy, me being completely dependent on my pacemaker etc. After discussing my case with several doctors familiar with my history they landed on the safe approach to put in a subcutaneous Defibrillator. They did not want to take any chances of a longer more dangerous Tachycardia episode occurring.

Well that surgery took place last week and did not go well. I left the hospital with the battle wounds and no defibrillator 😞After they put in a defibrillator they have to test it to see if it will work. They put your heart into V-Tach and the defibrillator should shock the heart. It sadly did not so they had to use the paddles. You know those crazy things you see on TV when they are trying to save a persons life.😳 Yep they used those! They did this a total of four times and the defibrillator never kicked in. It was mis reading my pacemaker. So at this point They made the decision not to keep me under any longer. They had to sew me back up with no defibrillator. The surgery that was suppose to take 2 hours took four and instead of a defibrillator sewn into my body I got fitted with an outside "Life Vest". Think uni bomber. It's a uncomfortable tight vest that is a external defibrillator.  It's there to protect me should an episode occur.  You could say My best friend for the moment. To say I was disappointed about the surgery was an understatement. I was tired, sad, and did not want to hear that more surgery was in my future. At the same time I was alive, my brain was working, there were no other complications, and I could still cry out to the Lord. All things I will never take for granted. 

Yesterday we met with my amazing Doctor who has basically lost many hours of sleep studying my case and talking to all the top doctors in this field. I'm so grateful for this man. He discussed two options with us. One option was to remove all of my leads and start new on the left side with a pacer/defibrillator combo. Super high risk for lots of complicated reasons with many doctors who are very uncomfortable with this option. It may be needed in the future but they all agree to put it off for as long as we can. Option B was to leave my pacer and the leads that are on the right alone and to just put an additional Pacer/defibrillator combo on the left running another lead to the heart. This is the plan we are going with. So I will now have two pacers. The kids think this is funny and cool all at the same time.They are calling their mom a Cyborg. The TSA's are going to have a field day with this I'm sure.  The reward will be that if the pacer on the right should go out or a problem with a lead occur we will have a back up. We will also have a much needed defibrillator keeping my heart from going into potentially deadly v-tach episodes. All very good things.

There are risks with this surgery but they far out weigh the other option. We feel good. We feel relief. We feel thankful for life saving medical equipment.  We feel ready to get it all behind us. It's been a hard last few months. Like always we see God's beautiful hand in it all, he's allowed us to minister to people through it, he's worked through his people beautifully as they have ministered over and over again to us.  It's because of this that we stay strong, it's because of this that are kids are doing amazing through it.  Keep praying and keep trusting. These 20 years are proof that God is so mighty and sovereign and works beautifully in all things.

Trying yet again to surrender it all

Being satisfied in God (or anything) always seems easier when all is going well. But when things you love are being stripped out of your hands, then the test is real. If God remains precious in those moments, then his supreme worth shines more brightly. He is most glorified. -John Piper

For those of you who have been following my blog for sometime know what a big John Piper fan I am.  He has been a huge encouragement to me in some of my darkest moments.  He constantly reminds me that it’s not about me, he reminds me that God is not wasting any of my suffering, and he reminds me that God loves to bless his children.  Oh how I need those truths repeated to me over and over and over again.  Why do I need to hear them again and again?  Because we forget.  We retreat inward and we allow ourselves to focus on our circumstances.  we focus on what they are doing to us instead of focusing on what HE is doing through us.  I once again have to make the choice of letting go of control, and fear, and doubt and surrendering it all to the Lord.  It’s not easy but I know the peace and joy that comes when we are fully able to rest in him.  I need your prayers that I will once again be able to do this.

This Thursday I will once again go in for surgery.  My heart is getting weaker and the doctors feel like the best plan is to put in a subcutaneous Defibrillator.  So that is the plan.  Our biggest prayer is for a successful surgery with no unexpected surprises.  My heart went through some stress after my last surgery and we are praying that the Lord would protect my heart.  Would you all say a prayer for Jason as he watches his wife once again get wheeled away for surgery.  pray that the Lord would meet him in the sweetest ways.  Pray for our kids that they wouldn’t feel anxious but would rest in knowing that the Lord is watching over their mom.  I’m filled up knowing that in the days leading up to surgery when I’m feeling depleted you all are lifting us up. Thank you for that.  You all don’t know what a gift that really is.

Another bump in the road

Thank you so much for all your encouraging words regarding our videos.  It was fun to get the kids involved and give you guys more insight into my surgery and also how Noah is currently doing. 

 I’m writing to ask for your prayers once again. We were feeling hopeful after my surgery with how well the feedings were going and the increased energy. It was so nice.  We unfortunately have come to another bump in the road and its pretty big.  After my surgery while I was in the recovery room I started having pretty intense chest pains.  The doctors were concerned and ran some tests.  The tests showed that my troponin levels were elevated. A Troponin test measures the levels of troponin proteins in the blood.  These proteins are released when the heart muscle has been damaged, such as occurs with a heart attack.  The more damage to the heart, the greater the amount of troponin in the blood.  A normal level is .10 0r lower and mine was .395. They ran several tests to check for blocked arteries etc. and determined that I most likely had inflammation around the lining of my heart.  I was to follow up with my cardiologist.  On March 30th I had a black out episode that lasted for a few seconds and took me by surprise.  I saw the doctor a few days later and he was able to pull up my pacemaker recording that told him on that day I had a Ventricular Tachycardia episode that lasted 11 seconds with my heart rate in the 200’s.  This could have led to me going into cardiac arrest if it was a longer episode.  Because of these incidents the doctors want to put in a cardiac defibrillator.  This is where things get tricky.  I have a pacemaker and four lead wires in my heart.  My arteries can not fit any more wires on that side.  Lead wires have an average life span of 12-15 years.  I have had mine for 12.  They might have to consider lead extraction surgery but it is high risk. My muscular Dystrophy is high risk just going under anesthesia.  There is a team of 4 doctors all consulting one another on the best approach and we will talk about the best plan this Wednesday. Surgery will most likely take place at the end of the month.  This has felt intense and emotionally depleting.  It didn’t help that a few days ago I had another bad fall either. Yep! Scraped up my elbow, bruised my knees, my ego lol., and have felt the aftermath in my whole body.  I seriously have considered buying and wearing a rubber suit.  Too many hard falls. It stinks. But you gotta get up, dust yourself off, and keep pushing through.  It also feels good to let out a scream, put on some good music, and laugh at the ridiculousness of it all.  

We all have a story. The one God writes for each of us may go down many paths. No matter where you are on the journey, there is a plan and a purpose to what you experience. If you are struggling, take comfort in knowing you are not alone.  It is hard enough to walk through pain and suffering but if you don’t have Christ none of it will make sense.  I urge you to put your faith and trust in christ if you haven’t already.  Only he can give you purpose, only he can help you make sense of it all. The greatest truth that you can ever hear is that Jesus Christ died but rose again, and that you, too, will die but can rise again into newness of life.

Please pray for us friends. Pray for all the doctors involved, Pray I would not have any more episodes and that God would protect my heart. Pray for Jason and our family that we would lean in to God as we walk through another bump in the road. I know God is not surprised by any of this and that is where I draw my comfort.  We will keep pressing on, we will hold fast to his promises, and we will bless his name in the process.  

Blog Update With Noah

I had some fun doing an interview with Noah.  Lets just say we are both not as natural or as comfortable as Jonah. There were many edits but we managed to pull it off.  We hope you enjoy the update.  Jonah is begging me to do another video with him so comment below what you would like us to talk about.  We would love to include your questions.  As always thanks for following us on this journey.

https://youtu.be/Egqv1p43Vmw

An Update and a VLOG

Hi Friends,

Thank you all for your continued prayers over the last few weeks.  The surgery for my G-tube went well.  I'm so thankful to be back to my old self.  The feedings are going great and we are beginning to see some bursts of energy.  Thankful to have this step behind us and we are hopeful that it is going to just increase my quality of life in wonderful ways.  I continue to be humbled by the way you all love and support us during this journey.  It's not always easy to enter into peoples hard trials.  I don't take this for granted.  I know what a gift this is and I just thank you from the bottom of my heart. Click on the link below to view a Vlog interview with Jonah and I about G-tubes.  This kid cracks me up.  He never shy's away from an opportunity to be on camera.  As always we are happy to answer any questions you might have.

https://youtu.be/WDAfOIWOZIE

God's Still Good

Hello Friends,

It has been a busy month with lots of doctor visits and tests.  I’m in a place where I’am just really looking forward to getting this surgery behind me.  So many of the doctors I have visited are all feeling hopeful that this feeding tube can provide relief in so many areas of my body.  I’m very encouraged by their optomism and very much hoping the same.  So here we go this Tuesday March 14th is the day.  I would very much appreciate your prayers.  This surgery normally would be a simple procedure in a radiation lab but because of my compromised breathing, pacemaker dependent, and muscular dystrophy they will need to take more precautions.  This means I will be admitted, intubated, and monitored closely overnight.  I would really not like to wake up to any surprises or complications. Whatever the outcome I know we will face it head on.  I was so encouraged by this following post I read today.  The following post comes from a man who’s daughter just received a new heart.  She has been barely holding on for the last 4 weeks.  I don’t know this family but his daughter has the same heart defect as our Noah.  The trauma they have faced these last four weeks could be our reality at any moment.  I hope in all I face that I would echo his same words.

OUR FAMILY HAS BEEN GIVEN A GREAT GIFT. Lexi has been given a great gift. There are many children and adults who are very sick while waiting for a transplant, and they die before an organ becomes available. Right now we are talking about how "good" God is because He answered our prayers and He provided a heart for my daughter. But this begs the question...if a heart had NOT been provided for Lexi, would God still be "good?" Would we have been strong enough to endure the ordeal of losing our child with our faith in our "good" God still intact? The goodness of God far surpasses the mortality of our child. For us to simply say that God is "good" when things go our way is crude thinking. I think that the "get-rich, success and wealth" gospel that is so prevalent in America has warped our concept of what a "good God" is. The Bible never promises health, wealth, and prosperity to people who follow God. God certainly DOES bless people with health, wealth, and prosperity, and we do see it in the Bible. However, it is not a guarantee. It should not be expected as a promise or a natural privilege of following Jesus. Not a single disciple was wealthy and prosperous. Their reward for following Jesus? Death and persecution. They were crucified upside down. They were beheaded. They were boiled in oil. Would any of them, having willingly laid down their lives for the sake of the gospel, denounce the goodness of God because of their suffering? I think not. The message of the gospel is not prosperity, health, wealth, and success. The message is that Jesus is enough, no matter what happens in life. It's that simple. We live in a fallen, sinful world, and suffering is part of the package.

So, God is not good because he gave us back our daughter. He ALREADY WAS GOOD to begin with! (“Oh, give thanks to the LORD, for He is good! For His mercy endures forever.”

Psalms 107:1) What God has shown us is GRACE. He has shown us favor which we did not deserve. What we have experienced pales in comparison to the salvation He has given us through Jesus, but it is one extra blessing we have experienced in our journey with Him. So how would we endure if Lexi had not received a heart, and if she had died one of the many times she came close to death on this journey? It would have been brutal. We would have been broken. But bones mend and wounds heal. God would have given us the grace to get through, and Lexi would be with Him. As it is, God has a unique purpose for Lexi here on earth, and He has honored our prayers and chosen to return Lexi to us. She will have to live her life to find out what that purpose is.

We can never understand the ways of God. However, we must trust in His goodness, knowing that He sees the full picture, and we can only see a small portion. Isaiah tells us, ““For My thoughts are not your thoughts, Nor are your ways My ways,” says the LORD. “For as the heavens are higher than the earth, So are My ways higher than your ways, And My thoughts than your thoughts.” Isaiah 55:8-9 

I hope his words are just as much an encouragement to you all as they were to me.  God has purpose in all he does. Amen and Amen!!!

Praise

We are still celebrating that we surpassed our goal for our service dog.  We are waiting to hear more details on the time line and will let you all know soon.  We were also able to purchase a mobility scooter.  My kids are so excited that mom gets to join in on bike rides and no longer has to wait on a charged scooter at Target or Costco.  WOOT!!!!  Watch out La Mirada peeps this scooter goes pretty fast.  Praising God for the ways he continues to provide and sustain us.

Prayer
I have a cold and can not risk it getting to my chest.  I want to be well enough for our woman's conference this weekend and for surgery.