Sitting here numb in disbelief that this has actually been my life the past 10 weeks. I was just starting to turn a corner. Hopeful that I was drawing near to the end of my recovery. My weight is up, pain has lessened, energy is up. Then the doctor lays another bombshell on me. Granted it's not his fault, he's just the messenger. After careful monitoring of the new defibrillator they determined that the lead wire has dislodged from my heart and I will need to have ANOTHER SURGERY. Yep if you have all been keeping track this will be 4 in 10 weeks. I can't even begin to tell you the disappointment I feel. These 10 weeks have been some of the hardest our family has had to face and if you have been following this blog for sometime and know our story we have faced some doozies. We are exhausted and weary and this surgery will come at some hard costs. I don't mean financially. Jason will need to give up his spot on the Japan mission trip, and I will have to have a huge level of trust sending Noah, Jason will have to miss more work, Jason along with many others will have to put on their care giver hats, my kids will not be able to rely on me once again during my recovery and they will have to watch me endure more pain and more time strapped to a bed, longer time that I will not be able to drive, Grandparents will give up more of their time and the list goes on. We know and believe God is at work in all of this and that his ways are wiser than ours. Sometimes it's hard to make sense of it all and that's when the rubber meets the road right? That's when all we have is to choose to trust. I choose to trust even when it's hard to keep enduring the pain. I choose to trust even when I'm exhausted and out of strength. I choose to trust when I see the tears from my kids faces as I tell them hard news. Yes I choose to trust. Is it easy? Nope but it's all I got. All I can do is revert back to God's truths. Lean in and let him carry me through. Let him be the lifter of our heads, let him guide my ways. I give it all up to him and I choose to trust. Please pray that we can do this well. We pray for wisdom that we would be faithful to glorify him in the midst of these hard things. Pray for our kids, for our marriage, for all the doctors and staff, pray for no more complications. You all have been carrying us so faithfully and thank you never seems like enough. We are getting through this because of your love and support so thank you❤️
Thursday, May 18, 2017
So we are all set for Surgery this Friday at 3:00p.m.. The last few days have been hard as the anticipation of this surgery is heavy on our minds. My surgeon told me that they will have to test the defibrillator once it is implanted. He also mentioned that there is a chance that it wont work because of interference with my current pacemaker. They believe this was the issue with the last surgery. If this were to be the case they will need to surgically remove my current pacemaker and set the pacer/defibrillator combo. Its hard, tricky, and causes fear for a lot of complicated reasons that are hard to explain.
Our biggest prayer is that the defibrillator would work, the lead will connect to my heart with no issues and all will go better than we could have asked. We are also hoping this recovery will go smoother than the last. It’s been a long 8 weeks and I’m just very ready to be on the other side of things. Grateful for the last few days to feel somewhat back to my old self. Below is a song that I have been listening to this week. Hope it blesses one of you.
Monday, May 15, 2017
Well we were all set for surgery tomorrow and just got a call an hour ago saying that the surgery needed to be cancelled. St. Joseph Hospital did not have the correct lead wire that my surgeon needed to perform the surgery. This is a huge disappointment because it takes so much work to coordinate kids schedules, and Jason’s work. They are looking at Friday of this week. Please pray for us as we are just trying to hold it all together at this point. We are tired, and fearful, and ready to get this all behind us. Pray that God would meet us in these moments. Pray that we would hold strong to his truths. I pray that we would relish and remember the beautiful ways he is working out his plan through even these hard moments. Thank you for continuing to shoulder with us. We appreciate each and everyone of you.
Friday, May 12, 2017
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.
Thursday, May 4, 2017
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.