I wish I had some really great news to share. We were so hoping that we would get approval for the transfer to UCLA and it was DENIED. So now the battle begins. The next step is to talk with our insurance broker on Monday. She has agreed to talk with Jason and we are praying she can help. We want her to help us switch to a PPO before open enrollment. We will also make an appeal against the medical group that denied us. The reason we want to fight so hard is because its the top rated heart transplant clinic in the nation, we have doctors over there that have taken a solid interest in Noah's case, they have worked hard, love our family and in some visits have not even charged us. Where we are at now, is with a doctor who has not shown any of those things, disagreed with said doctors, was proven wrong and put our son in danger. We have to fight. It's so hard to know what to do at times. I want to be in the Lord's will and can be so confused on what to do and how much to fight. Please pray that God would give us wisdom on how to navigate this whole process. We are confident all things will work together and that through the Lord nothing is impossible. Noah is still doing amazing. You look at him in disbelief that this is really happening. Sometimes we think it would be easier to accept if he actually looked sick but he looks great and we are thankful for that.
Noah's Aunt and Uncle started a facebook page called Noah's heart and are putting on a fundraiser. Check it out.
Yesterdays appointment gave us a plan. It is certainly not a plan that we would have ever chosen for our child, but it is the plan that God is choosing to reveal his Glory and so we trust in this plan. Based on the number pressures from Noah's Cath test he needs to be put on the heart transplant list right away. He does not need a pacemaker or defibrillator but needs a new heart. We asked what the typical wait was after you are put on the list and we were told he would wait 6-9 months. This was a lot to take in. We thought we had years before this would happen. It will take about 30-45 days to get everything in order to present to the heart transplant board. He will need lab work to determine blood type, tissue work up, meetings with the team, social workers etc. He will need to be on certain medications to prepare his lungs and organs to accept this new heart and much much more. This visit they answered some of our questions but we will meet with the whole team to go over more in detail and will give us a huge notebook that will go over every detail and question we can think of. He is now on the same medication as Hannah that will help his blood flow and help with the pains he is currently experiencing. We are still awaiting news for the transfer to UCLA. Please PRAY this will go through. The doctors are going to do all that they can to help us out but we really need this transfer ASAP.
We had a good talk with Noah after the appointment and explained that he would need a new heart. His sweet response was "Will I need to ask Jesus into my new heart?" I love how concerned he was about making sure Jesus remained in his heart. This kid blows me away sometimes. Daddy explained that it was a metaphor and that Jesus would always be with him but he could ask him again and again to come into his heart. He asked if he would be a different kid and when he could run but thankfully not where the heart was coming from. That will be a hard question for us to answer and will be praying that God would help us get through that conversation. We then had to tell him the news that broke his heart. We had to tell him that we had to miss our family vacation to Hume and wagon train camp. He broke down and sobbed and sobbed. He has been looking forward to going to camp for over a year now. The doctor said we had to stay at sea level because it would be too much on him and we need to be really close to a hospital. We told him we would plan something fun to do in place and that he could help us plan it. Over all he is handling everything better than we could have ever imagined. This is going to be a long road that is only just beginning. We want his heart to remain focused on the Lord and his eyes to be opened to see how God is using him in this storm.
He brings beauty out of ashes and his mercies are new every morning. We pray he will use this to strengthen your faith as you pray and walk along side us.
"Whoever dwells in the shelter of the Most High will rest in the shadow of the Almighty. I will say of the Lord, 'He is my refuge and my fortress, my God, in whom I trust.'" Psalm 91:1-2
So Thankful for my husband and his beautiful post. Not sure how I'm suppose to follow that :) I just wanted to give you guys more of a detailed post of where we are at now and try and answer some of your questions. We are currently battling our insurance to get a transfer to UCLA. We found out on friday that they need more information before they make there decision. We really want this transfer because we have met with the director of the heart transplant center at UCLA and he has a very close relationship with Dr. Chang. We feel very comfortable with him. On the 20th of this month we will sit down with him and Dr. Chang to discuss the plan of action and he will go over everything with us then. That day can not come soon enough. We are so grateful to Dr. Chang for arranging this meeting. He is not in our group and we technically can not switch to him until December. So this is a huge deal. He is such a huge blessing. He is honestly one of the greatest doctors I have ever known. When we saw Dr. Chang he confirmed that Noah will indeed need a heart transplant but really could not give us any details as to when. He told us to make sure Noah did not run or do any activity that would cause his heart rate to rise. He told us things to look for in Noah that would cause us to take him in immediately. When we left that appointment we were able to find a quiet park to have a talk with Noah. It was one of the hardest conversations we have had to have. We explained to him that his heart was sick, he would need more surgeries and that he wouldn't be able to run for a long while. We feel like that was enough information for him to take in and did not want to talk to him about the transplant yet. We shared how we truly believe that God is using him in a big way and were encouraging him to think of the ways he already has been blessing him. We are constantly surprised by Noah's great level of maturity and understanding in the midst of difficult circumstances. I know I did not always respond in the same ways at 9. Our biggest prayer is that he would cling to the Lord during this time, and really be able to see him at work through his circumstances, that his faith and love would grow even stronger. We have a long road ahead but truly an amazing God and an amazing support all around us. We are taking it one step at a time and making the most of everyday.
One of the questions we get asked a lot is how are you guys doing and how is Noah doing? We have our moments where we cry and can't believe it is happening like we are reading about someone elses life. These moments don't last long because God will show us his beauty through his word or different circumstances and cause us to realize it's not about us but what he's doing through us. He really is so good at that it is amazing. Some days we feel blessed to be able to be used by him and to be shown such great love from those around us. Noah is doing really well. We have had some precious time and talks. He also has his moments of tears and frustration. Another question we get is How can we help? This one has been a hard one for me to answer. I love being on the other end. We have been so grateful for the meals after those long doctor appointments. We have been grateful for the calls, emails, texts and hugs. Honestly prayer is a big one. Noah has been so grateful for the times his buddies have sat out with him to do a calmer activity. Please feel free to ask us more of your questions and we will try to answer them as best as we can.
We are already marking things off our summer fun list. Last night was Fancy Movie Night. We dressed up, ate a fancy meal, watched a fun movie, danced and played Charades. It was truly a memorable event. We look forward to many more fun summer memories.
My wife is taking the night off from updating her blog and allowing me to share some of the ways we have been processing these last few days. One of the things I have grown to love about my wife is her transparency and vulnerability with people – she truly wears her heart on her sleeve at times. She can be so open about her raw emotions, her thoughts, her failures and weaknesses. This just does not come as naturally for me. Anytime I am asked to share in front of a group of people or write a post for her blog she always says something like “don’t be afraid to be a real with people”. Not that I don’t want to be real with people, but there can be vulnerability when you open up your life. But our desire has been to continually glorify Christ in the midst of our weaknesses, our feelings of inadequacies or even in our frailness. We often feel like we have to present this strong, “got it all together” image to the world. But it is in our times of weakness and desperation that we often see the Lord so clearly. That is why after the Lord tells Paul in 2 Corinthians 12 that “My grace is sufficient for you, for power is perfected in weakness,” that Paul responds by saying then “I will rather boast about my weakness so that the power of Christ my dwell in me.” We all know deep down that we are weak. I am faced with the reality of that today more than I ever have been. But the creator of the world is not limited by our weaknesses; in fact he uses them to display His power. And that’s why my wife’s reminder to me is a good one as I write this blog.
Since we have received news from Noah’s doctor that he needs a pacemaker and a heart transplant my heart has been extremely heavy. I have had some despairing thoughts at different times over the past couple of days. I’ve anguished over the thought of having to tell my son some of the difficulties that lie ahead of him. I think about how his life might significantly change and how he will be faced so clearly with the reality that Paul talks about in 2 Corinthians that “…our outer man is decaying...” I know that our life on this earth will not last forever, but to be faced with the possibility of this so soon with our son brings me to the end of myself. As we sat in Church last night these are the thoughts that literally brought me to my knees. As we sang worship to our God I cried out to Him like I never have before. I cry out to Him because He is the same God today as He was last week. As I read Gods word it does not say that life will be easy in this world. He actually promises the opposite. Paul goes on to say in that 2 Corinthians passage “For momentary, light affliction is producing for us an eternal weight of glory far beyond all comparison, while we look not at the things which are seen, but at the things which are not seen; for the things which are seen are temporal, but the things which are not seen are eternal.” Our tendency is to cling to things that are temporary, to try and reconcile or block the painful things in our lives. We even begin to think about temporal things as not temporal. When I seriously consider this thought I can’t think of anything in this world...no matter what you believe that does not come to an end or fail us. Even if medicine had the power to cure every disease we still die. Only in Christ will we experience “an eternal weight of glory far beyond all comparison.” So that is why I fall to my knees in worship of the true, eternal God, Creator of the universe. That is why I praise the name of Jesus above all other names. In the midst of some of the most difficult circumstance in my life I have experienced Gods faithfulness, His goodness and His power to save but not because He will heal every disease or problem we face in this world but because one day He will wipe away every tear. And I don’t blindly place my trust in this hope. I know He will because Christ died for me and for you. He has paid the ultimate price that we could never pay so that we could have relationship with Him for eternity. God does not just say that He loves us, He demonstrated that love on the cross and not because we begged Him too but because “God so loved the world that He gave His only begotten Son, that whoever believes in Him shall not perish, but have eternal life.” That’s why Paul calls it “light and momentary affliction”. To God be the glory!
Thanks for allowing me to process all of this with you. I did not anticipate all that would come out when I started this post. I now have to spend the rest of the day trying to get my heart off of my sleeve and back in my chest. Thank you all for your prayers and support of our family. We can not imagine this time without all of you.
I’ll end with a quick update from today’s appointment with Dr. Chang (Hannah’s Doctor). He agreed to meet with us to go over the results of the test and confirmed what Noah’s doctor had told us. It sounds like Noah is definitely looking at a heart transplant but they are not able to give us the timing yet. We have another appointment in a couple of weeks with the Doctor from the Heart Transplant Institute at UCLA. We hope to get more details then. I will let Melody give a more detailed update on todays visit as she is better with these things.