Noahs Transplant story Part 3

I woke up this particular morning feeling grateful. Grateful that Noah survived the surgery.  Grateful for his donor, and grateful that the first twenty four hours were behind us. They took the ventilator tube out,Noah was doing well breathing on his own, and he was now off a number of medications. The doctors were very positive about the direction he was headed. Because he was doing so well I made the difficult decision of going home and getting some rest. Every time his transplant doctor came in she was almost giddy about his progress. Jonah was coming home this day from his vacation with friends and I wanted to be there for him as well.  I knew Noah was in good hands with Jason and if anything arose we had an amazing team of people who could get me back to the hospital as soon as possible.. It was hard to not be right there with him every moment but I knew I was doing the best thing for us all. The last thing we needed was for me to end up in the hospital as well. I face timed Jason and Noah often.  By the end of this day Noah was talking.  It was a tired, shaky, out of breath voice but it was so great to hear him talk.  He also sat up in a chair. Thirty hours after a transplant and he’s out of bed sitting in a chair.  This was incredible to me.  

Noah continued to do well each day surpassing the doctors expectations. He was up and walking, eating , and meeting each days goals. I was preparing myself for a setback but it never came.  God was gracious to us and because of this gracious gift it allowed me the rest my body so desperately needed.  Day five he was moved out of ICU into a regular room.  Once in a regular room they started preparing us for what life at home with a transplant would look like.  We all learned about the many medications he would be on, what they all did, and how time sensitive they were.  We learned about the importance of a low sodium heart healthy diet and foods he would no longer be able to have.  Then we learned about the many weekly appointments for labs, tests, and heart caths/biopsy he would have in the first year after transplant..  It was a lot to take in for all of us.  Most of this we had heard about but until its your turn its really difficult to understand the magnitude of it all.

Noah was discharged on Day 8.  We felt elated to be bringing him home but also nervous.  There is a bit of comfort when he is being monitored by doctors and staff.  It reminded us of the first time we brought him home after his birth.  We brought him home and felt so ill equipped for the job but you figure it out and after some time you feel more and more confident.  We are figuring things out now and feel like we are in more of a rhythm.  Medications are going smoothly and we are learning how to make heart healthy meals.  

When we arrived home from the hospital we were greeted by friends, family, community, and even fire men who lined our street.  They were holding signs and cheering.  I can’t even describe to you the overwhelming feeling of love and care I felt. In one of the hardest times of our lives, we have seen such beauty and felt so much love from God’s people.  You all know how to love well its unbelievable to me sometimes.  God continues to use you to show up for us in the most tender ways.  The cross we have been asked to bear feels lighter because of you.

Noah’s Heart Transplant Story Part 2

After getting the update that the transplant was successful and Noah was in recovery, my sweet friend Amanda drove me to the hospital where Jason and her husband were waiting in the waiting room.  We were waiting to hear when Jason and I could see Noah and were told it might be awhile.  My body started physically responding to the stress of the last thirty hours.  I was having heart burn, indigestion,  I was light headed, and every muscle in my entire body was hurting.  I was frustrated because I didn’t want to feel this way when I got to see my boy. I wanted to be strong. In my mind I felt relief that he was through the worst part of it all but my body was not reacting accordingly.  When we finally got to see him in the ICU he was intubated with his eyes half open and I thought I was going to pass out. Intubated means he had a tube down his throat that was doing the breathing for him. The room was crowded with nurses and doctors coming in every few seconds.  I was in my pink power chair trying to stay out of their way, trying not to hit anything, and desperately trying to listen to their explanations of what they were doing for him.  They all seemed pleased and excited for us. I wanted to share in their excitement but I felt like I was going to pass out and the mask around my face was not helping matters.  I was beginning to have a full blown anxiety attack. The doctors told us he would most likely be sedated the rest of he day and that we were welcome to come back and forth as much as we would like. The transplant doctor told me to try and get some rest.  Thanks doc I’m trying really I’am. I wanted to ask her if she ever had a Childs heart taken out but alas I knew she meant well and was just looking out for us so I politely refrained. We left the room to let the doctors do their job and we went to the outside patio to get some much needed air.  My feet began to swell and I was growing concerned with how my body was reacting to the stress.  Since my heart doctor was right there at UCLA, Amanda and I decided to drop in and see if he would see me.  He was well aware that Noah had just had his transplant surgery and agreed to squeeze me in .  This was God’s grace to me.  I felt a sense of relief after he had checked all my vitals, reassured me that my heart was fine and validated that this was a stressful situation.  Since Noah was going to be sedated most of the day we decided to check into the UCLA Tiverton house down the road.  This place was a short walk from UCLA and is similar to a Ronald McDonald house for families of UCLA patients.  It was nice to have a place to rest close by the hospital.  The ICU nurses had us write our phone numbers on the big white board in Noah’s room.  They assured us that they would inform us if any changes arose.  This brought me comfort and allowed me to get the rest my body needed knowing he was in good hands.  Jason went later that night to see Noah. Noah was still on the ventilator but was starting to breathe more on his own. He was a little alert and understood what was going on and could communicate by writing. The nurses had the tough job of trying to read his writing.  He likes to blame that on his homeschool English teacher( AKA mom.) I had never been more thankful for technology when  I got to face time him.  I have to admit I almost lost it when he gave me a thumbs up.  I needed that more than he will ever know.

This day was hard for me.  I was feeling every emotion deeply.  Not only was I trying to come to grips with the fact that my son no longer had his original heart but I was feeling for the family who selflessly gave him his new heart.  This heart that once gave life to somebody else. My heart grieved for this family.  It’s a huge gift and  responsibility and one that Noah will process for awhile to come. I was feeling for Noah and all the changes good and bad that come with a transplant.  I was feeling for my husband and all that was on his shoulders and, of coarse my other two kids who were also processing it all in their own ways.  What brought me the most peace was knowing that none of this was a surprise to God.  He knew the exact date and moment in time, he knew the donor, he holds my husband and kids in the palm of his hand, and when we cry out to him he delivers us from our distress.  God’s grace to me was also answering a specific prayer I had over the last ten years.  I asked God to protect Noah’s heart so that we wouldn’t be in a emergency situation.  A situation where he was in the hospital on borrowed time waiting for a heart. Thank you Lord for your sweet mercy and for hearing our cries.

Noah's Transplant Story Part 1

 Friends old and new, family, community, and strangers new to our story, thank you so so very much for journeying with us.  I can not even believe all that has transpired over the last two weeks.  

Two weeks ago today we were woken up by a phone call at 4 am.  They first called my number and my phone was on vibrate.  When they couldn’t reach me they called Jasons phone.  When we saw the area code our hearts dropped.  Jason answered the phone and in a shaky voice he just kept saying ok.  He motioned to me to come over to the phone and I motioned back to him to get me up.  We both knew I couldn’t get up on my own but when your in a adrenaline situation all logic goes out the window for a second.  He put the phone on speaker and got me out of bed and into my chair.  We sat there hearts pounding trying to take in all that the transplant coordinator was telling us.  We have the perfect heart for Noah, you need to check in by seven am, have him eat something before he comes, he doesn’t need to take his meds.  We tried to listen but so much was going through our brains.  The biggest thing was Is this really happening?  Is our son really going to get a new heart?  We have been talking about this for ten years and we knew we could get a call at any time but nothing really prepares you for the moment you get the call.  We hung up and held each other for a minute taking in all we just heard.  We took a deep breathe and went and woke Noah up.  We brought him into the living room sat on the couch and delivered the news.  He sat there stunned and said ok.  I couldn’t fight back the tears and told him it would be ok that we have been anticipating this for a long time.  We prayed together and asked him what he needed.  We began to pack, make phone calls, and deliver the news to the rest of the family.

The ride to UCLA was quiet and seemed strange to me that life was still going on all around me.  I knew that this was big and that our lives were about to change significantly.  I knew this was all God’s plan from the beginning and to quote C.S Lewis “ I have no doubt that the Lord will be good to us I just don’t know how painful that good will be.”  I lacked the physical and emotional energy needed to get through this.  It would take the Lord’s hand and all of you to help carry us through and that’s exactly what happened.  You all took care of every need before we could even think of what was needed.  Your prayers and scripture held me together.  It took almost twenty four hours before they wheeled Noah to the operating room. It was the hardest thing to watch them wheel him away knowing he would no longer have the original heart God designed for him. My body was so painfully exhausted.  Dear friends of ours got us a nearby hotel room within walking distance to the hospital.  I took some Benadryl to help me sleep and my sweet friend stayed to take care of me so Jason could wait for updates.  I didn’t move for four hours and woke up in time to hear that the transplant was a success and he was in recovery.  Praise Jesus! (Part two of this story to come soon)

I saw the Lord’s hand in preparing our hearts for this very moment in some big ways. Exactly a week before the call Noah and I had a conversation about transplant and we were talking about what we thought would be the ideal time.  Essentially we came to the conclusion that there wasn’t an ideal time in our minds and that we needed to trust that God knows best.  It was good to have this moment and I believe God was preparing our hearts.  Also the week before we got the call our good friend Jason Oakes was preparing to speak on Luke 12:22-34 at our church.  If your unfamiliar this section of Luke was on Anxiety.  Jason Oakes emailed Jason and I to ask us our thoughts on how we deal with anxiety while walking through suffering.  This caused me to study the passage and read back through previous blogposts.  We invited Jason over to talk through some of our thoughts. He came over on Thursday. It was a great evening talking through the ways in which worry equals God forgetting and trust equals God remembering and how important it is to be seeking first the kingdom of God.  This would be helpful to me in the coming weeks. Not only myself but Jonah poured into this passage and it was most encouraging to him the week of Noahs surgery. Saturday Jason and I spent the day on our patio talking through a message I was preparing for an upcoming woman’s bible study.  We talked through Joy and pain in suffering and how they coexist.  We talked through our story and the crazy year we have had so far not knowing what would come the following week.  On Sunday Jason Oakes preached the Luke 12:22 passage and our hearts were encouraged to Seek First the kingdom of God instead of seeking our own kingdom.  Tuesday afternoon Hannah was editing her testimony for her upcoming baptism and she broke down in tears.  She was overwhelmed thinking about how sick her brother was and the fact that he was going to need a new heart.  This led to a beautiful conversation about transplant and all that God had done over the last ten years for Noah and our family.  These moments were not coincidental.  God in his goodness had been preparing our hearts right up until the very moment we received that phone call.  He didn’t stop there.  He continued and continues to provide exactly what we need.

Stay tuned for part 2

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