Ednan's Procedure on
“Even though I am a Christian there are moments when I have been feeling down because of Ednan’s condition, but the fellowship at CURE Hospital rejuvenates my strength and gives me courage," says Esther. Her son Ednan was born with spina bifida… Read more
“Even though I am a Christian there are moments when I have been feeling down because of Ednan’s condition, but the fellowship at CURE Hospital rejuvenates my strength and gives me courage," says Esther. Her son Ednan was born with spina bifida and the wound ruptured while he was being delivered so he was immediately rushed to the ICU of Mulago Hospital and had surgery three days later. Two weeks after the surgery for spina bifida, Ednan developed hydrocephalus so Esther met with a social worker who advised her to come to CURE instead of waiting in Mulago Hospital. Esther says, “CURE Hospital is exceptional, if I compare it with the other hospitals that I have been to in Uganda. The doctors here are very patient with their caretakers and patients. One weekend Ednan stopped breathing, I was scared and cried a lot because I thought I had lost him, but the doctors did their best and he was revived and I was amazed.” Esther is married to Edgar and they have two children, Edlah, their firstborn and Ednan. Her husband Edgar is a pastor and together they have been running a small fellowship. Esther told us that God has been speaking to her and her husband to launch a church. Their family home is in Kampala, but Edgar and Edlah traveled to Mbale too and are living with a friend so that they can be close to Esther and Ednan who are now admitted at CURE Hospital. Please join us in praying for Ednan's healing!
We wanted to pass along to all of you a 'Thank you' from Ednan's family about how grateful they are for the support they received from the CURE staff and the online community during his stay as they remember him and celebrate his homecoming to heaven. Your prayers and encouragement have ministered to them, thank you friends.
“He has been a fighter. He was strong, but let him rest,” said a teary Esther. Ednan passed away early this morning. We don't grieve without hope knowing that Esther and her husband Edgar have faith in Jesus and are trusting in His comfort. We thank you all for the support and encouragement that was given to him and his family during his battle with sickness. Please pray with us that their faith community would surround them with love and be the presence of Christ to them during this difficult time.
“How I wish the surgery works. The doctors told me that that was the last option for the stridors to stop, and I want them to stop more than anything. I want my little man to be fine. I want to breastfeed my baby. I want to see him smile,” said Esther. She told us that it has been a rough couple of weeks for Ednan and for the family. Today, some tests are going to be run in the labs. “At least he is no longer on oxygen,” she said. He is still in ICU, so please remember him in your prayers.
“We are believing God it is the last surgery before he is perfect. Our final victory the end of the road we are hopeful,” said Edgar. Ednan is currently in surgery for a posterior fossa decompression. Dr. Peter and scrub tech Alex are removing a small portion of skull from the back of Ednan’s head in hopes that it will allow the cerebral spinal fluid to flow better. Please be praying for Ednan that the operation will be successful, and he will recover well!
“We are going home. He will settle slowly, slowly. For now, observe in case we see him worsening, call and find out what to do. The pressure has gone down. I was so worried I didn’t want to come back. I just wanted to go to prayers,” said Esther. Esther got to speak with Dr. Peter and Dr. Justin this morning before they were discharged. They will spend the rest of the week near CURE because they don’t feel comfortable going home yet. Please keep Ednan in your prayers that his shunt will work and his stirdors will decrease.
“I didn’t think he could make it here,” said Edgar. On Saturday and Sunday the pressure in Ednan's head was high and Esther and Edgar were very worried about the pressure and his stridors. “I wanted divine intervention and was taking him to church, but my husband said we had to go to CURE,” said Esther. On Monday, they decided to travel from Kampala to CURE. However, along the way they got a flat tire which delayed them a day and they arrived this afternoon. They met with Dr. Joshua, Dr. Noah and Dr. Michael for about an hour. “They have explained a lot and we are very informed,” said Edgar. Ednan has been admitted overnight to be observed and because it is too late for them to travel back home. Please continue to pray for Ednan that he will grow up well!
“I’m happy we are going home. Ednan is fine, by the way, the stridor has reduced,” said Esther. During morning ward rounds, Esther was told they could go home today. She called home to tell Edgar the good news then packed their things. We will see them again in January. “God is done great in this guy's life- he is lifting his legs now,” said Esther. Please continue to pray for Ednan to recover well from his operation and grow up well and healthy!
“We are here, at least happier. I fear the shunt so much, I fear to touch him like he might break,” said Esther. Ednan is being transferred out of the ICU and back to the ward. His breathing is improving, he is still feeding out of an NG tube, but his doctors have no major concerns. “I will not attempt to breastfeed till the stridors are gone. When I breastfeed, the stridors come back,” said Esther. “Pray we don’t get more stridors and that he heals completely."
“They are going to put a shunt in him, I fear the shunt,” said Esther. Ednan is now in the PACU waking up from surgery where Dr. Justin and Dr. Kerry successfully placed a shunt. He will be moved to the ICU later in the day. Ednan and Esther received a couple get-well messages which were a comfort to Esther. Back home, Edgar is anxious as he wanted to come to the hospital but Esther told him they were okay. Prior to the surgery, several staff members prayed for Ednan that he would have a successful surgery and for him to grow up well. Please join them in praying for Ednan to recover well from the operation!
“Let’s put them on the (surgical) list for tomorrow,” said Dr. Peter during morning ward rounds. Ednan and Esther are doing well except for Ednan’s striders, which have kept both of them up all night. This morning Esther read her Bible, in Micah 7:8-10 specifically. The passage gave Esther a lot of strength. “Those who are asking 'where is your God,' will come back and ask what did you do,” said Esther. Please continue to pray for Ednan that tomorrow’s operation will be successful, and pray for strength for Esther.
At 11 o'clock on Friday night Ednan and Esther returned to CURE. Ednan was having intense stridors and the pressure on his head had increased again. “They told us the ETV failed, they are planning to put a shunt,” said Esther. “Home was good. They only stole charcoal (while they were at CURE) but inside was intact everything was okay. I didn’t come with them (Edgar and Edlah). I came alone with Ednan.” Esther and Ednan have settled at the ward this morning. Esther went to staffs' chapel and they planned to attend the chapel service for the families this afternoon. Please continue to pray for Ednan that his throat will clear and his next surgery will be successful.
“We are going home. We believe in God for this healing,” said Esther. This morning Dr. Peter told her they could go home. Esther asked him about the stridor and if an ENT doctor could help. Dr. Peter explained the cause of the stridor saying, “It is not an obstruction. It's a weakness due to compression on the brain.” They are writing a referral letter for Ednan to see an ENT doctor and pediatrician. Dr. Micheal explained to Esther that children who have had compression on their brains struggle with breathing, and many don’t survive, and those who do need to be on oxygen. “What I want us to pray about for God is to intervene. If the doctors can’t help, we can not bear having a baby with such a challenge all the time not breathing. We have a team praying for his life, and we believe the supernatural is greater then the natural. I know God can rectify this problem,” said Esther. Esther shared how she has seen God work through this sickness. “Excellent, for sure. If it wasn’t for God’s intervention this boy wouldn’t have been here today. One thing I know is that this man has a special calling, that is why he is going through this because of that special calling on him and that is why the devil is battling his life, but God has really performed greatly. The fact that he was able to bring him back from cardiac arrest that is enough to testify of the Lord. I thought the boy had gone but after some time, I was like I’m just suppose to pray and God will intervene. After a few minutes they called me and told me the boy can now breathe on his own. I actually have another name- I call him Ednan Miracle because he is a miracle baby,” Esther said. Ednan and Esther are heading home today, and we will see them again at a follow-up clinic in Kampala. Please continue to lift them up in prayer!
“They are discharging us tomorrow, but they have no solution to the stridor, though. They will get us a pediatrician to help us,” said Esther. Ednan continues to have stridor when he feeds and cries. During the night, he had a bad episode which scared Esther. “God is in control. We are going to pray. The doctors have done their part, we have done our part, and God has done His part,” said Esther. She is happy that the water in Ednan’s head is now flowing. Her only concern is his breathing. Please continue to pray for Ednan that is breathing will soon clear!
This morning Ednan and Esther got to go outside for the first time in a week, which made Esther very happy. They sat between the ward and the ICU on a small retaining wall that is lined with parents every morning. Esther didn’t get much sleep last night, and she thinks Ednan is in pain. “He cried the whole night. The doctors say it is a sign of life,” said Esther. Ednan seems more active today than previous days and looks healthier. “He should be just fine, and we go home. I just want to go home. It has been a long time,” said Esther. Yesterday Esther attended the chapel service where she helped lead the mothers in a couple songs. “It was nice! It was good! I had a very intense headache, but I decided to worship and by the end my headache was gone,” said Esther. She has made friends with the CURE Pastors Winnie, Immaculate, and Simon Peter. “Winnie always comes every day,” said Esther. Please continue to pray for Ednan that he will soon be healthy enough to go home.
“I pray he gets well soon, and that we can go home,” said Esther. She continued saying, “We have been in hospital for two months. Mulago (National Referral Hospital), then here.” Ednan’s stridors are reducing, Esther said. They are now just in the upper throat. His appetite is also improving, and he is still feeding through the NG tube, but he is now drinking sixty millilitres up from fourteen. Edgar was asked what his prayer requests are, and he said, “For the stridor they are our only threat, and for a quick and full recovery. Walk well and to heal from incontinence control over urine and to become fully recovered." Let's stand in prayer before God for Edgar, and ask for God to grant him his prayer requests!
“He has been calm since we transferred him down to the ward,” said Dr. Micheal. Esther is very happy that they are moving out of the ICU and into the ward, she described ICU as stressful. Now that Ednan is out of the ICU, he can be held by his mother more. Esther says, he doesn’t want to be in the bed anymore. He just wants to be held. With Ednan now breathing on his own, Dr. Michael felt comfortable to move him out of the ICU. “He is breathing fine,” said Dr. Michael, “It is now just when he breastfeeds (he has stridor) he used to stridor even at rest. At night, we transferred him here, but he was not fine.” Ednan is now off oxygen he still has stridor when he feeds and cries, but when he is calm he sounds fine. Please Ednan in your prayers that he will continue to improve!
“When they told us we are going for theatre we had joy. I have concluded it was God,” said Esther. Esther has been fasting the last two weeks from morning to midday and has a network of around a hundred people praying for them. “People call and say, 'Esther let's pray,'” said Esther. ”Ednan is fair now, just the breathing,” said added. Ednan is improving! Last night, they removed his breathing tube, and he is now on an oxygen mask, his doctors have no new concerns and he seems more active. Today, he will continue to be in the ICU and on oxygen because he is having stridor, which is a wheezing sound when he breathes. Today, Immaculate from the spiritual center met with Esther. She shared her testimony with her, and then they went and prayed for Ednan. Please join them in praying for Ednan- that his breathing will improve and he will soon be moved out of the ICU!
Last night Ednan began having respiratory troubles. He was transferred to the ICU where he suffered respiratory distress, but he was intubated and stabilized. Ednan was scheduled for a ventriculoscopy. Even with the respiratory difficulties, the medical team felt comfortable with the operation. However, the case before Ednan’s had complications, so Ednan’s case was delayed and eventually canceled. Then later in the day it was decided to send Ednan into surgery because his poor breathing was related to the increasing pressure in his head. Dr. Justin performed an ETV with partial CPC. Esther had a hard day and had several staff members pray with her and her husband Edgar. Please join in praying for Ednan to recover quickly from his surgery, and for strength for Esther and Edgar!
Esther says that her prayer is that Ednan will have a successful surgery and get completely healed. Her husband and their son Edlah, their firstborn, will be visiting them this afternoon. For now, Ednan will be in the labs where some more blood tests are being run. Please be keeping Ednan in your prayers!
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