Therefore let him who thinks he stands take heed that he does not fall (1 Corinthians 10:12)
This morning as we drove to Sheba Hospital there was a sense of expectation that Ali may be discharged today.
Not long after we arrived at the cardiac centre Ali was called for his echocardiograph. Ali is well known to the technicians for his curiosity and excellent voice volume. This morning was no exception. As Ali’s mother and I worked together to distract Ali and/or hold his limbs still, the echo technician patiently and methodically went about obtaining her data. The electrocardiograph (ecg) technician was better prepared with playthings which still didn’t pacify Ali completely but enough for her to get a quick and clean reading and an oxygen saturation reading of 79%.
Even though Ali’s oxygen saturation isn’t so high and he is quite blue in the face and at his extremities at times, the paediatric cardiologist was happy with his progress. Still, because his weight (12.55 kgs) has not changed much since his previous assessment, and to ensure that there is no medication rebound, Ali needs to have his medications slowly reduced. So, just a little bit longer in Israel. Although Ali’s mother was a bit disappointed she was heartened by the cardiologist’s positivity. As well, she understands that Ali’s treatment is a staged process meaning that he will be returning for a further surgery in about two and a half years. While Ali will remain on aspirin until his next surgery, his other medications will continue for 1-2 weeks until, what we pray, will be his discharge echo on 24th October.
It was a busy day for our group and a very long one for Ali. He was fussed over by many and especially Moshe and Talal.
He eventually had a nap at the hospital and the ride home was perfect for a nano nap.
Please pray for patience and peace for Ali’s mother over the next two weeks and that Ali continues to respond to the medications as they are titrated.
Praise God, Ali has been improving! He does not tolerate sitting through the various cardiac exams because he is full of movement and occasional smiles. Though he prefers to move excessively during his exams, we are very pleased that he is full of life.
We are hoping that in two weeks, that Ali and his mother will finally return to Kurdistan. The doctor wants to safely remove him from some of his medications prior to his return to Kurdistan. Please pray for strength for these next couple weeks and for a wonderful time of community as we approach his departure date.
Ali’s mother joyfully embraced me when she heard the news that Ali was improving. The doctor was very pleased with his cardiac exam results. The echocardiogram revealed that his pericardial effusion, or the fluid around his heart, was decreasing. That meant that he could reduce his medications and is now one week closer to returning home to Kurdistan!
The doctor even admitted his joy in seeing Ali improve over the last few weeks. Ali was playfully drumming on the doctor’s desk during our discussion regarding Ali’s cardiac results. Despite Ali still dreading the cardiac examinations, there were moments where Ali joyfully smiled while playing with other children.
The healing process is slow, but we are all rejoicing in Ali’s improvement. God can mend our broken hearts and create a more beautiful heart within us. May this be true of Ali’s heart. It has been an honor to see Ali grow, not only in stature but also to see him in grow in joy. Philippians 1:9-11 (ESV) states, “And it is my prayer that your love may abound more and more, with knowledge and all discernment, so that you may approve what is excellent, and so be pure and blameless for the day of Christ, filled with the fruit of righteousness that comes through Jesus Christ, to the glory and praise of God.” This is my prayer for Ali and his family.
Ali gleamed with happiness as he excitedly started the engine of the little red car in the electrocardiogram room. He was so excited that we could not get a blood pressure reading on him. He was dancing and would not stay still enough for the monitor to obtain an accurate measurement (or a still photo).
Ali had an echocardiogram test today. To his mother’s surprise, the fluid surrounding his heart had decreased. The doctor was pleased with the results. The plan is to slowly decrease the medications that he is on and monitor for a decrease in the amount of fluid around his heart. Ali’s mother was so thankful to hear the news that her son was improving.
Ali has a very complicated heart, but we are so thankful to God for sustaining his life. Every day is truly a blessing from God. Despite all the complexities and intricacies of his heart, God knows his heart. God created Ali so intricately and wonderfully, and fearfully in his image. God has an amazing plan for Ali, and my prayer is that Ali will grow to know and love God.
Ali’s mother was an encouragement to the other mothers that were awaiting their children’s assessment. There was a moment where many mothers were listening to Shakar’s mother share about her beloved son, who is currently on full respiratory support. It was beautiful to see how they were able to care for and support each other. She reminded me to simply be with and to listen during difficult times. May we as believers seek to empathize and to encourage each other through Christ’s love.
Ali’s follow-up echocardiogram revealed similar amount of pericardial effusion, or fluid build up around the heart, as the previous echocardiogram. The doctor does not believe that the steroid is working and is tapering Ali off the medication to allow the body to readjust to producing its own natural steroids. A non-steroidal medication was given to help support the body in reducing pericardial effusion. Please continue to pray for his healing and for his family to learn more about a God who empathizes with us.
Ali’s echo today showed that there no change to the pericardial effusion; the liquid surrounding his heart. But when I’m thinking about writing the words “there’s no change,” the words of Jesus came straight into my mind:
But Jesus answered them, “My Father has been working until now, and I have been working.” John 5:17
And so I really love this idea of God, our Father who is always working. When we don’t see change ourselves, its doesn’t mean that nothing is happening. Our Father is always working and so we can take heart and have hope with this assurance.
Thank God that he also is sustaining Ali’s mum with a light, beautiful spirit and joy.
Please pray that the fluid around Ali’s heart will decrease, and that we can have good news when he has his next echo on Sunday.
Ali’s mum called me this morning as we were leaving for the hospital, just in time for us to get a seat for the car, as she said he is going to be coming home today! This is great news, for this special mum who has stayed so happy and strong throughout her time in the hospital.
It was a real pleasure to be able to accompany Ali out of the hospital. He is completely transformed from when he came into the hospital, even now I’m thinking back to times before when his oxygen levels were so low, he was turning almost grey in colour. Now he is beautifully pink and looks so healthy!
Ali’s mum was in a beautiful mood and as she left she said goodbye to everyone she has spent these weeks with. She is one of the friendliest people I know, and I’m sure she is joy and sunshine to everyone who meets her. She hugged and kissed goodbye to the other mothers and children, thanked all of the ICU staff, and continued a little “in joke” that she has with the lady who cleans the rooms. She is a friend to everyone, and I really love this about her.
The nurses there said very fond farewells to her and Ali as well. So, I can see how the pair make a lovely impact on everyone they meet.
Thank God for his healing in Ali, and please pray it continues.
We started this day with the hope of taking Ali home. But soon after we left the house, we were informed that Ali had to go back to the secondary ICU, due to an echo that showed fluid in his lungs. As we entered the hallway in front of the ICU, Ali and his mom were the first people we met. Ali’s mom demonstrated the picture of a real-life hero, instead of being disappointed and discouraged. She stood tall and kept a smile on her face.
It was wonderful to see how she still encouraged the other parents and kept joking and laughing. Please pray for Ali that he will be discharged very soon and of course also for Ali’s mom that she will keep this inspiring, positive attitude and that she will visibly receive God’s strength in this uncertain time.
Little Ali has been moved to secondary ICU in the last days, which shows a big improvement of his current health situation! This handsome boy looks very good, isn’t pale anymore, but is sitting in the bed and moving to all kinds of music and sounds around him. Since he is a strong child he was already extubated, which is another good sign in his development. Only the pain at his surgery site brings him to tears.
Ali wants to be active, so he moves around and explores the bed. His mother welcomed us warmly; she is so happy to watch this great progress. She is smiling all the time and joking with her son. She is a very thankful woman. Praise to the Lord for this good news! Please keep praying for him that his wounds are healing and he develops well further on.
When I walked into Ali’s room, I was slightly confused. I thought there might have been some mix up and actually he didn’t have surgery yesterday? But the gauze pad in the center of his chest, signified the tell tale incision wound from the operation. I couldn’t believe my eyes, Ali, who was significantly less blue than when I last saw him a few days before, was up, completely awake and alert, scooting all over his bed, playing and playing with toys. He had been extubated last night, and is thriving. One of the nurses tarried in the doorway of his room, and said, “Can you believe he had surgery yesterday?” To everyone’s disbelief, Ali is doing wonderfully, to the point where you wouldn’t know he had open heart surgery yesterday. His sweet mum was so happy! Thank you Jesus for Ali’s life!
So today was the day for Ali’s surgery, and Ali’s mother was very emotional. I hugged her and she didn’t want to release me. She told me that she is both happy and sad; happy that Ali is going to be better and sad because he is alone in that room. I told her that Ali is in good hands!
After maybe four hours they took Ali out from the surgery room. The doctor told us that the surgery was difficult but that Ali is doing well. Mother was very happy and grateful. She smiled and thanked God. Please join us in praying for Ali and his health.
How good and pleasant it is when God’s people live together in unity! Psalm 133:1
Last Friday just before Shabbat, started we took Ali to the ER. It was the second time that we have taken him to the ER because of his low oxygen level. In the morning his oxygen was a little low in comparison to the last couple days, so we gave him more liquid to keep him hydrated. But after a few hours he hadn’t improved, so I gave him supplemental oxygen and this didn’t help either. At some point in the evening his oxygen dropped dramatically and we called the ICU (following their instructions after the cath) and they told us to take him to ER. As we prepared to leave, it was so beautiful to see our all our families and volunteers around Ali praying for him.
Praise the Lord on our way to the hospital he didn’t have any complications. All the way Mom was praying for her little baby; he seemed so tired. When we arrived at the hospital, they tried multiple times to get the IV line, which caused him to cry and his oxygen dropped again. His mom is really amazing, and so strong. Praise the Lord, finally they were able to get the blood sample and established the IV line to give him liquids. He slept for a while in the comfortable arms of his mom.
After few hours in the ER, finally he was admitted to the Secondary ICU, the doctor and nurse there were very friendly to us, but Ali cried every time someone other than mom was close to him. And every time that he cried his oxygen dropped. Around 1 am I left the hospital, since he was settled into a room, and the doctors were waiting for the results of his blood test. But praise the Lord he was stable.
Yesterday we called the ICU and they said that he was stable and much better; still with a nasal cannula. Please pray that the schedule for his surgery will be open so he can have his surgery as soon as possible, and for his recovery to be quick.
“Yes, Ali has a special heart,” said the cardiologist today while she was reading and performing a new echo for Ali. But what is also special is the care God has for this very special boy. Ali was crying at the time of the echo but at the end he fell asleep. His oxygen levels have been very low in the past few days. Finally today he has been admitted for his assessment cath.
The surgeons want to check his lung pressure and want to understand and get more information about Ali’s heart anatomy because he has a very complex heart. This is why they are going to perform the cath first. After gathering all this information, the cardiologist will decide how to do the operation. The doctor explained everything related to the cath.
Possible (but low-risk) complications of the cath include: needing a blood transfusion and it was a really special moment when Ali’s mother told the doctor that her mother and grandmother are Kurdish-Jews and she consented that Ali could receive Israeli blood. The doctor also explained all risks related to anesthesia. They will perform another echo while he is sleeping. The mother was really thankful and relaxed. We really appreciate your prayers for both Ali and his mother.
Happy little Ali is one of the children we have at home at the moment who is always looking so so blue. But today, his oxygen levels dropped even lower than usual over quite a long period of time, and so we agreed to bring him to the Emergency Room to have him assessed.
He was quickly triaged and waited no time at all to be brought into one of the treatment rooms and be put on oxygen with firstly an oxygen mask, and then a nasal cannula. He also needed a blood test, and a cannula. All things caused him to get extremely upset and distressed, sending his oxygen levels even lower, sometimes down to 35%. We watched his fighting little body as it went through the shades of blue until he looked quite grey which was difficult to watch. He screamed and writhed about in distress a lot, which is so the opposite of the joyful soul which we see at home.
Poor Ali was really terrified during these procedures and so afterwards for the next few hours, his mum worked hard to try and console him, but every time we thought he was just settling, he began to cry again.
I was so impressed by Ali’s mum; I knew that she must just know what to do in these horrible emergencies, and how to care for him. I know she must have done this before so many times in Kurdistan; she is a mother of 4, and of course Ali has had these very cyanotic episodes throughout most of his life. She knows what to do. He is a big boy as well, and it was hard and heavy work for her to hold him all the hours. She was so graceful and committed to his welfare.
The good news is that cardiologist who took care of Ali while he was in the ER was confident to send him home this evening. Ali was given some IV fluids, and as he calmed, and became more hydrated, his oxygen saturation improved somewhat. He didn’t have any other symptoms, and so the medical team were happy to send him home until he comes again hopefully next week for his catheterisation.
It was a real pleasure and honour to be able to spend these hours with Ali and his mum. I was so glad when Ali started to calm down (which was mainly when the x-ray machine was brought into his room; he really liked it and found it interesting!) and his happy little personality came back. And his mum is a beautiful person and it has been lovely to be with her as well.
Please keep praying for Ali’s health over the next week as he is hopefully brought into the hospital for a catheterisation.
Ali had his chest CT scan this morning. Because he is so young, it was done under sedation by anesthesia, and he frightened them a little bit due to his blue color and low oxygen levels.
Mom was really brave, even when they made her step out of the room during CT. As soon as they told her she could go to the recovery area, she jumped up and ran to be with him!
It has been difficult for Ali’s mom to be told “wait, wait” for decisions about his care, especially as so many other children at the house are going for catheterizations and surgeries. Ali’s oxygen saturation’s have also fluctuated a lot in the past few days, with periods when he is more cyanotic (blue). This makes everyone concerned about the wait. Ali’s mom is lovely and helpful at the house, often helping with the other children and translating for a Yazidi family from Syria who does not speak Kurdish.
After the doctors review the CT scan information, they can create a plan for this precious child with his unique heart.
Meanwhile, please Pray for Ali, his beautiful and strong mom, and for the doctors. Pray that Ali and mom receive the comfort of Jesus through this long and stressful process.
Ali is a such happy, handsome and sweet boy of 9 months old. When we took him from home he was just smiling me. Today he had his first assessment in Sheba hospital.
They performed an ECG and echo, and took vital signs. He cried a little bit, but we got him to calm down after trying a lot of things. But the doctor was able to get the picture that he needed. He found that his heart is more complex than it said in his report from Kurdistan. The doctor explained to mom that he will need a surgery but before that, they need to see the anatomy of his heart better, so he needs a CT scan. Please pray that his CT scan can be scheduled soon and he can able to get his surgery soon. Also pray for strength in this time for Mom and him as they are far away from home.
Nine-month-old Ali is one of four small children born to a peshmerga soldier in Kurdistan, northern Iraq. The father himself came through cancer treatment just two years ago.
Although chubby, Ali has multiple heart defects and only about 70% of a child’s normal oxygen levels. He may need more than one surgery. These surgeries are not available in Iraq, and the family does not have the resources alone to travel abroad. A helping hand extended now by the people of Israel and their Christian friends will be long remembered.