While tears of disappointment were shed one week ago due to medical delays, tears of a different sort were shed by Viyan and his aunt on the eve of their departure home. Farewells are typically emotional affairs at Shevet, and this one was no different. As memories were shared and praises given to God for Viyan's restored heart, his aunt cried freely. I love how real this woman is. You never have to guess how she is feeling as her heart is quite unveiled. I saw on her tear stained face the weight of struggles past and the hope of new horizons.
Viyan, our little gentleman, has at last received the clearance to return home. No one could have been more delighted, except his aunt, perchance. Both have been anxiously awaiting the aforementioned news. Two more blood tests over the past few days confirmed that Viyan's Coumadin dosage is now correct, thereby stabilizing his INR (clotting factor) level. Although he will continue to require weekly or monthly blood tests, Dr. Danielie at Sheba Medical Center is comfortable with sending him home for follow-up there.
When I shared this news with Viyan and his aunt, their faces beamed with joy. The countdown could officially begin. As I trace my thoughts over the last two and a half months, I remember a shy, small-framed boy who barely looked me in the eye. I watched his manners and surprising maturity with admiration. Then, with time, I saw his playful spirit emerge, even during his two week hospital stay. Though days were difficult following his surgery, Viyan's confidence grew exponentially. He is no stranger to our office now, but rather strides in at any hour of the day with a big smile on his face.
As is so often the case, I have witnessed more than just a physical transformation in this child. His heart has been opened both to healing and to love. God has given us a precious gift in sharing this small yet significant time in his life with him. Please join us in celebrating Viyan's health and joy as he sets his gaze toward home tomorrow!
The good news, however, is that Viyan's heart is beating soundly without any complication. Today
I had the pleasure of accompanying Mr. Viyan to his first follow up appointment at Sheba Medical Center this morning, along with his aunt and Caroline from Shevet. The four of us found the city already wide awake as we traveled towards Tel Aviv. Waiting for the nurse to call Viyan's name, Caroline and I noted how comfortable and outgoing he has become with us. While I have often described him as a little gentleman, he is also a ten-year-old boy who loves to have fun. I think his antics and funny faces were entertaining everyone in the lobby. Viyan's shy and quiet stage is long gone. He is out of his shell and thoroughly enjoying it!
When Viyan's echo commenced, he lay perfectly still watching the nurse's every move (except when he turned to face the camera!). I kept giving him a thumb's up to reassure him that everything was going well. The doctor came in shortly afterwards to review the results of the echo and make adjustments to his medications. His report was very optimistic, stating that both shunts are functioning properly, and no excess fluid lingers around his heart or lungs. It was also brought to my attention that Viyan has a trivial VSD (small aperture between the two lower chambers of the heart); however, it's size and condition does not warrant surgical repair. Furthermore, Viyan is being treated with Coumadin, a strong medication that thins the blood, thus preventing dangerous clots. The Fontan shunt in his heart leads to an increased risk for blood clots and requires prolonged Coumadin therapy, perhaps for years. This also puts him at risk for hemorrhaging if he cuts or bruises himself due to clotting factors being low. Since a boy his age loves to be active, please pray for his protection.
Before leaving for home, the doctor commented on how well Viyan was looking and how much he enjoyed seeing him again. He also made the observation that perhaps it was not the surgery alone that is aiding in Viyan's healing, but also the love he is receiving here. I couldn't agree more. Love: truly, God could not have bestowed a more perfect gift, and "we love because He first loved us." 1 John 4:19
Our delightful and brave-hearted Viyan returned home to the Shevet community this evening. Though his immediate recovery phase at Sheba was prolonged for several reasons, his double shunt and VSD repair is holding fast.
Initially, Viyan had not been breathing adequately, causing fluid buildup in his chest cavity. Today's echocardiogram proved his respiratory status is now stable with no evidence of excess fluid. We also learned that doctors have been monitoring his circulatory system, believing him to be at risk for blood clots. Because even a small blood clot can be life-threatening, Viyan is being treated with a medication called Coumadin to help prevent this problem from arising. Tomorrow, he will have additional blood work done to determine any need for dosage adjustments.
We have all been long awaiting Viyan's return and rejoice that he is under our roof once again. I believe both he and his aunt share our joy in being home in Jerusalem. Viyan will return for his first follow-up appointment next Sunday. Meanwhile, Shevet's little gentleman will continue winning hearts and making friends as he heals day by day.
When a carload of Shevet volunteers arrived at Sheba late Friday afternoon, we were happy to find that Viyan had transitioned out of secondary ICU. He not only had switched rooms, an indication of progress, but was also up and walking the halls.
Viyan strode toward us with a confident smile. He showed no signs of discomfort or melancholy, as in previous visits. Rather, he was back to his usual gentlemanly ways, kissing our hands as he greeted us. Viyan's aunt was equally warm, throwing her arms around us and catching us up on the latest news.
We learned that her nephew is doing very well and may be discharged in the near future. An echo at the start of the week will provide more insight into his heart's recovery. Through this, doctors will gain a better idea of when he will be ready to return home. Apparently, his parents and siblings at home are eagerly keeping up with Viyan's and his aunt's adventures in Israel. During our visit, his aunt entertained us with a phone conversation full of animated story telling.
Our visit ended with Viyan proudly showing off his "battle wound." We all clapped and cheered together with hugs. This may sound like a strange thing to celebrate, but it is so important for these children to not feel afraid or embarrassed about their incisions. While heart surgery calls for combating physical obstacles, the emotional and psychological challenges that accompany them are just as real.
I believe, by God's grace, Viyan is bravely overcoming every aspect of his operation. Join with us as we pray and cheer Viyan on toward further victory!
Viyan is still within his first week of recovery from surgery. The process is moving along well, if a little slowly. He is still struggling with pleural effusion, which is an excess of water on the heart muscle. Tubes attached to his chest are draining blood and other fluid. Today the nurses said that they have finally taken away the additional oxygen support, and that he is no longer in need of the breathing exercises (although some practice every day would still help).
The time that Micha (fellow Shevet volunteer) and I spent with Viyan today would be best characterized as playful. We brought a few items to play with and he filled his room with bubbles as we pretended to swim in them. I realized that his blowing of the bubbles was, in essence, like a breathing exercise, and so we may have encouraged him a bit more than we would have otherwise. He didn
Viyan was looking well today. Micha and I arrived at the Sheba hospital just as he was about to have a bit of lunch. When I stretched out my arm to greet him he pulled my hand up to his face and kissed it. He is one of the sweetest little boys I know. Minutes after we were there his aunt continued to feed him some bread with yogurt (a Kurdish favorite for breakfast). I was slightly surprised to see that he was still relying on the drainage tubes and self administering oxygen. The nurse said that because Viyan is still having a bit of trouble taking in adequately deep breaths, he will continue to use the breathing practices until more improvement is made.
Micha and I tried to convince Viyan to practice the breathing exercises that he loathes, but he would not budge in his dislike. He is still unable to have more than a teaspoon of water, which would really dampen anyone
You never know exactly what to expect from a child the day after major surgery. Perhaps because Viyan is such a good-natured boy I thought he would be the same as he always is. He was quite the contrary. Viyan's temperament matched the weather outside--dreary with a chance of thunderstorms. He glanced casually up at me than directed his gaze elsewhere. When I spoke with him, I could tell he was listening even though he wasn't making eye contact. Viyan was uncomfortable, to be sure. Nothing seemed to cheer him up, not even his favorite song, "Yek, Du, Say Papulas" (One, Two, Three Butterflies). One ray of sunlight on this rainy day was the fact that Viyan was extubated and awake Once his nurse entered the room, I began to understand why Viyan was so sullen. For one, he is not allowed to drink water right now, to prevent volume overload in his system. He really wants water! The nurse graciously gave him one teaspoon from a syringe and wiped his lips with moistened gauze. That seemed to appease him a little. Next, the nurse said his oxygen level was lower because he wasn't ventilating properly. The last thing someone wants to do after their has been opened is to take deep breaths and cough. But that's exactly what Viyan needs to do. Otherwise, post-op fluids will accumulate in his chest, causing respiratory complications and delay healing. Nurses are trying to encourage him to exercise his lungs by using a simple hand-made device. It's a medical glove attached to a drinking straw, and with each breath the glove inflates into a plump-looking hand.
Viyan's aunt was up for the task in overseeing this activity. Apparently, she didn't think he was trying hard enough and began scolding him, to which Viyan closed up like a clam. I then tried giving her an example of a firm but encouraging coach, rather than a drill sergeant. I explained to him that even though it was difficult, he needed to do what the nurse said, so he could get stronger every day and come home. It took a lot of coaxing to get Viyan to try again, but he did! A chest X-ray was completed late afternoon to investigate any further reasons behind his reduced oxygen. Tomorrow's forecast for Viyan is promising, with the plan to remove all chest drainage tubes. This is certainly a good sign of progress.
Viyan's aunt is a strong and resiliant woman with a good sense of humor, and she's doing a fantastic job of standing by her nephew. Please pray for her and Viyan as they weather the storm of post-op blues, and find in Messiah their refuge. "For You [Lord] have been a defense for the helpless, a defense for the needy in his distress, a refuge from the storm, a shade from the heat...." Isaiah 25:4
Psalm 27:2 says that the Lord "gives His beloved sleep," and so he did for Viyan on the eve of his operation. When Misha, our German volunteer, and I arrived at Sheba early this morning, we found Viyan sound asleep. He looked so peaceful: a precious sight to behold just minutes before something as daunting as thoracic surgery. We spoke softly with his aunt, allowing him a few more undisturbed dreams.
When Viyan's eyes slowly opened, they were accompanied by a shy smile. I don't think he expected to wake up to visitors at his bedside. Before the medical team arrived, sunlight poured into the room. I shared with Viyan how much God loves him and that He knew him before he was born; God would be with him through the surgery and help the doctors make his heart better. His eyes reflected the morning light as he quietly listened.
Soon after, doctors and nurses surrounded his bed, reviewing the details of surgery, obtaining consent for anesthesia, and lastly, remarking on what a wonderful boy Viyan is. As one doctor scooped him up in her arms, another doctor stroked his hair and commented, "He's like a grown man. He's so special." Their affection toward him took the anxiety out of a potentially frightening situation.
Hand in hand, Viyan was then escorted to the operating theater. His complex diagnosis, Double Inlet Left Ventricle (DILV), required a sophisticated double repair called the Glenn-Fontan Procedure. Only one side of his malformed heart is functioning, stunting his growth and tinting his skin blue. Summarily, two major detours, by way of shunts, were made around his heart so that Viyan's body, lungs, and brain will now receive a much greater supply of oxygen-rich blood. This will help him to keep growing and playing the way a 10-year-old boy should. I gave him one last hug and kiss, and the doors closed behind him.
When I found his aunt somber and tearful in her room, we sat side by side, occupied by our own thoughts. I asked her how she felt about being asked to escort Viyan to Israel and was surprised by her response. In so many words, she said that she came because he's family and that's what families do. They help each other. She's not afraid about being in Israel either. In fact, her feelings are quite the opposite. "Israel zor chosha (Israel is very wonderful)!" she exclaimed. Pointing to Misha and I, she continued, "You are my sister and brother. I love you." I let this sink in for a moment before asking why Viyan's parents were unable to come. His mother is nursing young children and his father was supposedly detained by local government. This unique situation required Viyan's family to make personal sacrifices for the purpose of saving his life. This is beautiful love.
While Viyan's surgery continued past the two hour mark, his aunt needed her uncontrolled diabetes issue to be addressed. Off to Sheba's Endocrinology Department we went. The intensity of Viyan's operation added to the stress and emotions of this situation. An additional two hours were spent speaking with doctors and nurses on her behalf before returning to the pediatric waiting room. It was at this point that we discovered Viyan's operation had just ended ten minutes prior! He was being attended to in the Intensive Care Unit and we would see him shortly. How we celebrated with hugs and kisses and praises to God!
When we first caught sight of Viyan, his aunt cried silently, her eyes fixed on his face. I explained to her what the various machines and tubes were for, but what she really wanted to know was how the operation went. Thankfully, two doctors gave me congruent reports that all went well and both shunts were completed. Viyan surprised us both by opening his eyes briefly. His focus moved first to aunt and then to men. Tears filled his eyes before the effects of anesthesia took over again.
I hurt for him in that moment