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.