Monday, February 27, 2017

Day 27 - Cameron

We started our adoption journey in May, 2016. We had 3 biological children and they were all under the age of 3 so we did the most logical thing, we checked off minor needs and under the age of two. We intended on taking this VERY slowly, thinking this might even be a two year process. We knew that would be helpful given the young ages of our children. But we knew God called us to start right then, so we did. We completed our homestudy and dossier in about 3 months. 

In August we were less than a week away from sending our dossier to China when I came across his face in an advocacy group. He was going to be 3 years old soon, had a complex, un-repaired congenital heart disease, and had been waiting for a year for someone to say "yes". His listed needs were VSD, Pulmonay Atresia (in his case a completely absent Pulmonary Artery), and Major Aorta Pulmonary Collateral Arteries (MAPCA's). Some may classify this as a rare form of Tetrology of Fallot, or TOF with PA and MAPCAS. While others will call it VSD, PA, MAPCA’s. He seemed to be doing well according to his file, despite his desperate need for corrective surgery. He had some clubbing and cyanosis. 

MAPCA’s are very rare. They develop when the fetal heart fails to develop a pulmonary artery. An absent pulmonary artery is not comparable with life. The baby’s body must create it’s own unique blood flow to the lungs, called MAPCA’s. If these MAPCA’s aren’t providing adequate blood flow, the baby may not survive. The MAPCA’s have to be surgically removed from where they originated and inserted into the heart via a conduit. The procedure is called Unifocalization. This procedure can be performed on children with MAPCA’s if the arteries are big enough. If the procedure is successful, the child will require lifelong cardiac catheterizations for ballooning or stenting of the arteries to keep them open. In addition, the child will need open heart surgeries to replace the conduit has he outgrows them. 

My husband is a Physician Assistant and still would have been hesitant to take on any heart need. But it just so happened, we believe by the hand of God, that he saw two adult CHD patients in his office in the weeks before checking off our medical needs checklist. These adult patients lived normal, healthy lives. THAT gave him the confidence to consider heart needs.

I am a cardiac sonographer (currently a stay-at-home mom) so heart needs in general I am comfortable with. But his file came with one report that stated "inoperable, palliative care only" and we received two others from surgeons in the USA that felt confident in a full repair, although it would likely be a staged procedure, meaning more than one major open heart surgery in the first year. There was the risk that the they would be wrong and he may not be able to be repaired. There was the risk of multiple, complex, open-heart surgeries. Therefore, no matter the comfort level, there were big risks and lifelong management. 

We knew his needs looked scary to most and too risky. He was a boy, over the age of two and had a complex heart need. We new his chances of being adopted were low. We knew he had already been waiting for a year. The question became, “Why not us?” And the reality was that this child needed surgery as soon as possible to live. After a lot of discussion and prayer we decided that the risks were something we were willing to accept. 

My husband had one final concern before we could say yes. Saying yes would be saying yes to a medically expedited adoption, which would mean that all of the funds for the adoption would be due soon, rather than being spread out. And his surgery would have to be right away which would mean paying out out of pocket maximum for our medical insurance at the same time as finalizing our adoption. And because this would fall at the end of the year, we would need to prepare to pay our out of pocket max again come January assuming he would need the second open heart surgery then. So we needed to have all of the adoption funds plus our out of pocket maximum amounts times two, all within 4-6 months. I've been a stay at home mom for 4 years so we are on one income with soon to be 4 children. That is a lot of money that we didn't have. The day came that I knew we had to make a final decision. That day we received a very generous and God led donation of $10,000. My husband left work to come home to sign our papers with me that said, YES, we want to adopt our son!

Two months after saying, “Yes”, on October 17th, 2106, we were in China holding our son. We named him Cameron. He was an orphan no more. He became a son, brother, grandson, nephew, and a cousin. (If you consider a medically expedited adoption, ours was 5 months, start to finish.) His fatigue and shortness of breath were obvious, along with some clubbing of his fingers and some cyanosis.

We went straight to the hospital from the airport once we were back in the USA. But because Cameron was more stable than his doctors anticipated and just as complex, our team decided to push his surgery back a couple months. That would give them time to coordinate his surgery with two more surgeons and some other talented staff. This gave us priceless bonding time at home before surgery. 

Photo Credit: Cheryl Thompson Photography

Cameron has a joyful glow and a contagious smile. He loves to laugh and make others laugh. He jumped into our family so seamlessly. 

On January 5th, 2017 Cameron had major open heart surgery that he waited all his life for. We were not given a timeframe for the procedure, only that he was their only case that day and to expect it to be a long day. They took him from me to the OR at 7:45am. We settled in to the waiting room and waited. 

Each update seemed to come quickly. A nurse came out on the hour, every hour. She had such great news each time we began to rejoice and get excited for the next update! Before we knew it our surgeons came out to speak with us. Cameron's procedure went exactly as planned and the correction was COMPLETE! Not partially complete, no staging needed, he was FULLY REPAIRED. However, after they took him off bypass the new pulmonary arteries (MAPCAS) went into spasms and clamped down. Cameron wasn't getting enough blood to his lungs. He had to be put on ecmo and moved to the cath lab to attempt stenting the MAPCAS to open them back up. I knew this was serious. I knew it was life-threatening. I knew getting stents through those freshly sutures in delicate MAPCAS would be risky and slow and tedious. But what I also knew, by God's amazing peace and comfort and plan for Cameron, is that he would be just fine. I knew it. I saw the worried look on our surgeons face and I told him, I said "He is going to be okay." I knew God was with us, I knew He was in the operating room. I just knew. We waited again. It was after/hours by that point so the updates were not as timely because the only staff left were the ones with hands on my son. The first update the nurse said that they did the cath, did not place stents, and were cleaning out and stopping bleeding. I wasn't worried about the bleeding, but asked why the stents weren't placed. She said my doctor would come talk to me and that she has to go to help with the bleeding. After about 30 minutes of no one coming to follow up I did start to worry. I started to worry for the first time in 10 hours. So I played my praise music and I praised and prayed. I knew if they couldn't place the stents that he wouldn't come off ecmo. I wondered what they were doing and what the plan was. Finally after a very long 30 minutes I received word that they stopped the bleeding and were going to start stenting. What a relief!!! Before I knew it they stented two of the three arteries and were trying to get him off ecmo. In no time at all I received word that he was off ecmo and doing great! What a miracle! At close to 13 hours after they started he was moved to the ICU. Our surgeons said the repair was perfect and he would need a surgery MANY years from now to replace his conduit and valve (it will be when he outgrows it, because his heart will grow but those implanted parts will not). I want to add a HUGE thank you to our surgical team. 

We were able to see him right after he arrived in the unit. He looked amazing!! He looked just like our Cameron. There was no swelling. His color was normal. It was incredible. Over the next week he progressed amazingly quickly. Tubes and lines came out. He was extubated! We praised the Lord through every step and obstacle overcome. 

Then came pneumonia. In one day he his chest tubes went back in, his arterial line went back in, his foley went back in, and he was re-intubated. We expected major complications right after surgery and a long recovery because of Cameron having such a major repair at age 3. It's hard on these children's lungs to function with so much more blood flow than they are use to. In addition, their other organs are getting more blood flow as well. It's a wonderful thing, but takes a toll on the body to adjust to such big changes. We even rented an apartment for 4 weeks for Cameron’s surgery in anticipation of complications. Cameron unexpectedly did so well immediately post op that this took us by surprise. But our faith never wavered. We still knew that God was with us. His peace was unmistakable. We knew that he had planned our journey, inch by inch. It was all in His hands and it was our job to wait and keep our eyes on Him. “And the peace of God, which transcends all understanding, will guard your hearts and minds in Christ Jesus.” Philippians 4:7

His heart was still fully repaired and functioning beautifully. Cardiac-wise, he was perfect. Perfect for the first time in his life. For the first time in his life, his heart was working in a way that would give him a full lifespan! That is a miracle that we held on to and focused on and thanked God for. 

Days went by without real progress in vent-weaning. The pneumonia was better but Cameron’s breathing pattern wasn’t. On January 21st the intensivist said that Cameron had either had a stroke or that he had bilateral diaphragm paralyzation. Those were the only two explanations for his odd breathing pattern and why they couldn’t wean him off the vent. We prayed over our son. And we kept out eyes to the heavens. “Be still and know that I am God.” Psalms 46:10

The next day, Sunday, he went to the cath lab to have his diaphragms checked. An hour later they brought him back and said that they could NOT diagnose diaphragm paralyzation. Sunday night, for the first time, I noticed a change in Cameron. He started playing with a small motorcycle toy and was using both hands. The next morning, Monday, he was suddenly, without explanation, with no changes in his medical treatment, breathing in a normal breathing pattern. When the doctors had done everything they could do, when they ran out of options, when they couldn’t, HE did. God healed our son. By the way, they went forward with the MRI on that Monday as well. It showed NO evidence of a stroke that would have had any effect on his breathing pattern. Doctors and nurses repeatedly said in reference to his new normal breathing pattern, “We have no explanation for this”. Staff that heard the news came by to see for themselves. They would stand in his doorway and watch him in amazement. And we would say “It’s a miracle. God is good.” 

“Do not throw away your confidence, which as great reward. For you have need of endurance, so that when you have done the will of God you may receive what is promised.” Hebrews 10:35-36

On the 24th of January he was extubated. Staff members continued to visit daily to see our miracle. On that note, I want to thank our entire medical team for loving my son and making us feel so cared for. On March 2nd we were discharged. We were discharged with a fully repaired heart and beautifully functioning lungs. We left on no supplemental oxygen. Cameron’s oxygen saturations are around 92-95 completely on his own. We had to stay in town for another week in case we needed our medical team and for a follow-up with cardiology. We spent a total of 5 weeks away from home. Before this I would have thought you were crazy if you suggested I would spend 5 weeks away from my other 3 children. I’m a stay-at-home mom that doesn’t even utilize baby-sitter’s for errands. When you hear “God equips the called”, friends, I’m here to tell you it is TRUE. If you think you can’t, you probably can’t on your own. But when God calls you to do something you can throw all of those “can’t’s” you hold on to out of the window because when you step out on faith to your calling, GOD just stepped on the scene. Don’t tell me what He can’t do. God can do anything but fail. 

For the future, Cameron will need a cardiac cath in about 3 months to stent his third MAPCA (only two of them were stented on the day of surgery). After that we simply monitor him with cardiac follow ups, echo’s, cath’s, and lung scans. We anticipate another open-heart surgery years from now when he outgrows the conduit. That recovery should be easier than this one.

The bottom line is, adopting a child with complex CHD is worth it and I would (and probably will) do it again. Cameron deserved this. He has a great purpose and has already changed our lives for the better. My faith was tested. It was strengthened. I’ve never felt closer to God and more confident in His love and plans for us. We stepped out on faith and had a front row seat to miracles. We are thankful. We are blessed. And we are so excited to see what God has in store for Cameron’s future. We are honored to be the ones cheering him on. 


Post a Comment