It's been exactly 1 year after my son's heart operation. And he is now an active and happy baby. Alhamdulillah.
A bit too active la to say. Boys kan. Nak mandikan dia and change his diapers pun a challenge. I can burn calories just rushing after him!
I love him so much.. although sometimes I don't show it as much, but I do... He is my life, my soul, my everything.
Showing posts with label VSD. Show all posts
Showing posts with label VSD. Show all posts
Monday, April 20, 2015
Wednesday, December 10, 2014
Dealing with VSD - Part 5: Days after the Operation
On the day after Arif's life changing operation, we had two rounds of visiting time to see Arif. The second time Dr. Siva was there in the ICU. He came up to us and told us that some fluid went into Arif's lungs and they are giving medication to reduce the fluid, because if it doesn't, they would need to poke another hold just beneath Arif's rib cage to release the fluid. If not done, Arif could get Pneumonia and that would be risky in his condition.
We prayed hard that everything went well. Yus had to go back to Penang for work, so mom accompanied me in the hospital instead. Sadly, the next day when I just came in the ICU, Dr. Siva was there to tell me that the fluid amount in Arif's lungs did not reduce, so they needed to probe another hole beneath his rib cage. The doctor and his team covered Arif's bed while I waited behind the curtains. I could here Arif mumbling in pain. All I wanted to do was to be beside him to hold is hand. The nurse then asked me to wait outside because I kept on peeping thru the curtains. It took them about 20 mins before I was allowed to see Arif again.
They gave him another set of sedatives to let him go to sleep. So again, he was there, jsut laying down, motionless. I kept checking his stats and breathing. Everything was normal, but a mother could do nothing but worry when their own child is in this condition.
That evening, me n dad went to see Arif. As we came to his bed, his eyes was open, and Arif managed a smile. Oh God... the feelings we had back then. Both me and dad were crying. Dad then rushed outside to get my Mom. Arif's eyes just looked at me and around him. I guess he was wondering where he was and why I didn't hold him like usual. "I can't baby... not until all the wires has been removed. Mommy is here for you to hold your hand. Don't worry". Mom came in and Arif looked back and forth between us. He then started wriggling and crying. I guess he got upset that neither me or mom was holding him. His blood pressure went up, and the nurse had to come in and gave him some resting meds and asked us to take a step back to look at Arif. If he gets stressed up, his blood pressure would go up, and that wouldn't be good for him. So the whole time in ICU, we tried not to make any contact with him that would require him to need us to hold him.
In total, it took Arif 5 days to recover in the ICU, 2 days in HDU and 2 days in the normal ward before he was released to go back home. 6 weeks of confinement, close monitoring at proper washing and holding had to be done. We pushed it to 8 weeks so that Arif would recover well.
6 weeks went along pretty fast, and Arif recovered well. Alhamdulillah. Doctors told us that the hole had closed, though it would take time for his heart to fully recover.
It's been 8 months since his open heart surgery. Arif is turning 1 in 2 days time. He's an active boy now who loves to eat fruits, scream and knows what he wants. Feisty little child.
Arif my son, you're my little Super-Hero. You've survived a major surgery and become a normal, healthy boy. Even if you have that scar on your chest to remind you about it, take it as a warrior scar. A scar that proves you're a hero. A survivor.
Mommy loves you.
They gave him another set of sedatives to let him go to sleep. So again, he was there, jsut laying down, motionless. I kept checking his stats and breathing. Everything was normal, but a mother could do nothing but worry when their own child is in this condition.
That evening, me n dad went to see Arif. As we came to his bed, his eyes was open, and Arif managed a smile. Oh God... the feelings we had back then. Both me and dad were crying. Dad then rushed outside to get my Mom. Arif's eyes just looked at me and around him. I guess he was wondering where he was and why I didn't hold him like usual. "I can't baby... not until all the wires has been removed. Mommy is here for you to hold your hand. Don't worry". Mom came in and Arif looked back and forth between us. He then started wriggling and crying. I guess he got upset that neither me or mom was holding him. His blood pressure went up, and the nurse had to come in and gave him some resting meds and asked us to take a step back to look at Arif. If he gets stressed up, his blood pressure would go up, and that wouldn't be good for him. So the whole time in ICU, we tried not to make any contact with him that would require him to need us to hold him.
In total, it took Arif 5 days to recover in the ICU, 2 days in HDU and 2 days in the normal ward before he was released to go back home. 6 weeks of confinement, close monitoring at proper washing and holding had to be done. We pushed it to 8 weeks so that Arif would recover well.
6 weeks went along pretty fast, and Arif recovered well. Alhamdulillah. Doctors told us that the hole had closed, though it would take time for his heart to fully recover.
It's been 8 months since his open heart surgery. Arif is turning 1 in 2 days time. He's an active boy now who loves to eat fruits, scream and knows what he wants. Feisty little child.
Arif my son, you're my little Super-Hero. You've survived a major surgery and become a normal, healthy boy. Even if you have that scar on your chest to remind you about it, take it as a warrior scar. A scar that proves you're a hero. A survivor.
Mommy loves you.
Tuesday, December 9, 2014
Dealing with VSD - Part 4: April 19th 2014
On Arif's IJN check up at 3 months old, the doctor set the date of his Open Heart Surgery on the 19th of April, Saturday morning.
We were not allowed to let Arif get sick at any point of time between now and the operation date, as getting him sick would postpone his operation hence risking a lot of other things.
A month and a half went by, and Arif had to be admitted on the 17th of April to prep him for surgery. Not a day gone by without me worrying about Arif's operation. It scared me a whole lot. I lost one child, I was not prepared to loose another. The feeling, only a mom would understand. A mom who has a child whom had a heart complication.
Arif was all cheery and happy as he usually is. Everyone in the hospital loved him for his dimpled smile and big wide eyes.
My husband came on Friday evening, the night before Arif's surgery. Both of us didn't sleep well at night. Even Arif. I was given a special antiseptic liquid for Arif to bathe the night and morning before his operation.
That morning, it was total silence, except for Arif's constant giggling and cooing. He had no idea what is happening and what he will be going through in an hour or so. As soon as I put Arif in his operation gown, I couldn't help but tremble, my heart stopped a few times, I swear. This is it... the operation that would determine Arif's future.
Mom and dad came on time in the wee of the morning, 30 mins later, the nurse came in to ask us to bring Arif down to the operation theatre. My heart skipped again. Me, husband and my parent's face went pale.
The nurse asked whether we wanted to hold Arif or bring him down on the operation bed. I told her I'd hold Arif. My parents started crying. Especially dad. Me n Hubs walked in silence, his hand behind my back to support me and Arif. My knees were weak.
In the waiting room, the nurse asked who would accompany Arif into the operation theatre. I will-I said. So after what seems like a life-time (10 minutes to be exact), the nurse called me to change into an operation robe. Mom hold Arif while I changed. 5 minutes later. the nurse called me to bring Arif into the operation theatre. As we went thru, there was at least 1 doctor (the anesthesiologist) and about 4 nurses in the OT room. There were so many gadgets. Arif had no idea what was coming to him. He was smiling and cooing, even smiled to the nurses and doctors. Dr. Siva hasn't come, but I was told he will come only after Arif was under the sedatives. I was told to carry Arif onto the OT Bed. Arif got a bit panic, but managed a smile to the doctor who called his name. The doctor asked me to hold Arif's hand while he injected the anesthetic into Arif. It took less than 30 seconds. Arif was smiling and suddenly froze in my arms, eyes still open. I asked the nurses and doctor what happened, they told me Arif was already unconscious. I called his name, but no response. The nurse pulled me back and told me I had to leave the operation theatre and wait outside. I resisted at first, then I followed suit, controlling back my tears. I manage to turn my head a couple of times to look at Arif before the OT door closed. I then went back to change, all the time having images of Arif unconscious in front of me. Hubs and parents waited outside. We then decided to go downstairs for breakfast. I managed a drink and a snack. Soon after, my uncle and aunties came to meet us.
After breakfast, me and hubs went upstairs to have a rest. We managed less than an hours sleep. The rest were nothing but restless sighs and constant checking on our phone. Took a hot shower to relax myself. Two hours went by, I heard songs being played outside the Children's Ward. I went outside to see a group of people from a company (couldn't remember which) singing music to the other children. I tried to keep myself happy without worrying. Then I met with another patient's mother. Can't remember her name, but her son's name was Ammar. He was in the operation theatre too, for the same condition as Arif, except that he also had a narrowing in one of his valves.
While I was talking to the mom, one of the ward nurse entered. She smiled at me and asked 'Dah tengok anak?'. I told her no, and she was surprised because she was notified that Arif would be coming out of the OT soon. She asked me whether I got a phone call from the ICU nurse, I told her no again. So she mentioned that I should just probably wait unti I get the call from the ICU Nurse. About 20 minutes later, I got a phone call from the ICU Nurse that Arif would be coming out of the OT and me and hubs should be ready at the waiting room. I quickly went into the room, and hubs got the same phone call right after mine. I called mom and told her to meet us at the waiting room in front of the ICU.
It took another 15 minutes of waiting before the security guard called 'Parent to Muhd Arif Zulkarnain, please follow me'. We jumped and followed the guard. He brought us in the ICU where we saw at least 10 child patients in their beds. The guard told us that Arif is being prepared to be transferred from the OT to the ICU and that we should wait in the designated area for Dr. Siva to come and explain to us about the operation before we're allowed to see Arif.
Another 30 mins went by, Dr. Siva finally came. He told us that Arif's operation was successful, Alhamdulillah, though the hole in his heart was bigger than expected. He said that as per normal procedure, Arif would have to be kept in ICU for about 3 days for close observation to see how he handles himself. After the doctor left, we had to wait for another 15 minutes before we could see Arif.
After a total of 3 and half hours, the nurse finally told us we could see Arif. As we walked to his bed, I was hiding behind my husband. Scared to see what Arif would look like. When we reached his bed, our heart dropped, our knees weakened. Arif's eyes was closed and he had so many wires on him. He looked so weak and vulnerable. The ICU Ward doctor came up to us to explain all the wires. There was one in his neck to inject medication, one tube going thru his nose for feeding, one drain tube under his chest to drain the excess blood and fluid from the operation, one urine tube in his little birdie, another tube in his legs for other medications, ECG wires to monitor his heart rate and a heart rate and blood pressure wire stuck on his little feet.
We held Arif's arm and recited Doa's. Talked to Arif for a few minutes and went out to give time to my parents to see Arif. the ICU visiting hours were very strict, and we had only an hour to see him in the afternoon. We waited outside with my uncles and aunties, a few of my cousins came along too. I remember almost everyone of my relative that came out form the ICU after seeing Arif, was all red-eyed and teary-eyed. Seeing my baby whom we know as such a happy baby, being so vulnerable and helpless. I managed to see Arif one more time before the visiting hours finished, giving him a kiss on his forehead before we left.
We were not allowed to let Arif get sick at any point of time between now and the operation date, as getting him sick would postpone his operation hence risking a lot of other things.
A month and a half went by, and Arif had to be admitted on the 17th of April to prep him for surgery. Not a day gone by without me worrying about Arif's operation. It scared me a whole lot. I lost one child, I was not prepared to loose another. The feeling, only a mom would understand. A mom who has a child whom had a heart complication.
Arif was all cheery and happy as he usually is. Everyone in the hospital loved him for his dimpled smile and big wide eyes.
My husband came on Friday evening, the night before Arif's surgery. Both of us didn't sleep well at night. Even Arif. I was given a special antiseptic liquid for Arif to bathe the night and morning before his operation.
That morning, it was total silence, except for Arif's constant giggling and cooing. He had no idea what is happening and what he will be going through in an hour or so. As soon as I put Arif in his operation gown, I couldn't help but tremble, my heart stopped a few times, I swear. This is it... the operation that would determine Arif's future.
Mom and dad came on time in the wee of the morning, 30 mins later, the nurse came in to ask us to bring Arif down to the operation theatre. My heart skipped again. Me, husband and my parent's face went pale.
The nurse asked whether we wanted to hold Arif or bring him down on the operation bed. I told her I'd hold Arif. My parents started crying. Especially dad. Me n Hubs walked in silence, his hand behind my back to support me and Arif. My knees were weak.
In the waiting room, the nurse asked who would accompany Arif into the operation theatre. I will-I said. So after what seems like a life-time (10 minutes to be exact), the nurse called me to change into an operation robe. Mom hold Arif while I changed. 5 minutes later. the nurse called me to bring Arif into the operation theatre. As we went thru, there was at least 1 doctor (the anesthesiologist) and about 4 nurses in the OT room. There were so many gadgets. Arif had no idea what was coming to him. He was smiling and cooing, even smiled to the nurses and doctors. Dr. Siva hasn't come, but I was told he will come only after Arif was under the sedatives. I was told to carry Arif onto the OT Bed. Arif got a bit panic, but managed a smile to the doctor who called his name. The doctor asked me to hold Arif's hand while he injected the anesthetic into Arif. It took less than 30 seconds. Arif was smiling and suddenly froze in my arms, eyes still open. I asked the nurses and doctor what happened, they told me Arif was already unconscious. I called his name, but no response. The nurse pulled me back and told me I had to leave the operation theatre and wait outside. I resisted at first, then I followed suit, controlling back my tears. I manage to turn my head a couple of times to look at Arif before the OT door closed. I then went back to change, all the time having images of Arif unconscious in front of me. Hubs and parents waited outside. We then decided to go downstairs for breakfast. I managed a drink and a snack. Soon after, my uncle and aunties came to meet us.
After breakfast, me and hubs went upstairs to have a rest. We managed less than an hours sleep. The rest were nothing but restless sighs and constant checking on our phone. Took a hot shower to relax myself. Two hours went by, I heard songs being played outside the Children's Ward. I went outside to see a group of people from a company (couldn't remember which) singing music to the other children. I tried to keep myself happy without worrying. Then I met with another patient's mother. Can't remember her name, but her son's name was Ammar. He was in the operation theatre too, for the same condition as Arif, except that he also had a narrowing in one of his valves.
While I was talking to the mom, one of the ward nurse entered. She smiled at me and asked 'Dah tengok anak?'. I told her no, and she was surprised because she was notified that Arif would be coming out of the OT soon. She asked me whether I got a phone call from the ICU nurse, I told her no again. So she mentioned that I should just probably wait unti I get the call from the ICU Nurse. About 20 minutes later, I got a phone call from the ICU Nurse that Arif would be coming out of the OT and me and hubs should be ready at the waiting room. I quickly went into the room, and hubs got the same phone call right after mine. I called mom and told her to meet us at the waiting room in front of the ICU.
It took another 15 minutes of waiting before the security guard called 'Parent to Muhd Arif Zulkarnain, please follow me'. We jumped and followed the guard. He brought us in the ICU where we saw at least 10 child patients in their beds. The guard told us that Arif is being prepared to be transferred from the OT to the ICU and that we should wait in the designated area for Dr. Siva to come and explain to us about the operation before we're allowed to see Arif.
Another 30 mins went by, Dr. Siva finally came. He told us that Arif's operation was successful, Alhamdulillah, though the hole in his heart was bigger than expected. He said that as per normal procedure, Arif would have to be kept in ICU for about 3 days for close observation to see how he handles himself. After the doctor left, we had to wait for another 15 minutes before we could see Arif.
After a total of 3 and half hours, the nurse finally told us we could see Arif. As we walked to his bed, I was hiding behind my husband. Scared to see what Arif would look like. When we reached his bed, our heart dropped, our knees weakened. Arif's eyes was closed and he had so many wires on him. He looked so weak and vulnerable. The ICU Ward doctor came up to us to explain all the wires. There was one in his neck to inject medication, one tube going thru his nose for feeding, one drain tube under his chest to drain the excess blood and fluid from the operation, one urine tube in his little birdie, another tube in his legs for other medications, ECG wires to monitor his heart rate and a heart rate and blood pressure wire stuck on his little feet.
We held Arif's arm and recited Doa's. Talked to Arif for a few minutes and went out to give time to my parents to see Arif. the ICU visiting hours were very strict, and we had only an hour to see him in the afternoon. We waited outside with my uncles and aunties, a few of my cousins came along too. I remember almost everyone of my relative that came out form the ICU after seeing Arif, was all red-eyed and teary-eyed. Seeing my baby whom we know as such a happy baby, being so vulnerable and helpless. I managed to see Arif one more time before the visiting hours finished, giving him a kiss on his forehead before we left.
Tuesday, June 3, 2014
I am grateful...
I am grateful that Arif was lucky to get a place in IJN. IJN jas a long waiting list of patients with Arif's condition. Some even more criticical than him.
If you were to see yourself in IJN the condition, you would understand better. Everyday, the pediatric ward would be full of children with heart conditions. Even the ICU is packed with people. According to sources, 2-3 operations are done a day in IJN towards saving a life of a child with a heart condition. Children all over Malaysia are taken in. Although I understand, some children could not be accepted into the hospital due to the full hose situation.
I am grateful and blessed that I had my family who helped tremendously in terms of finance and strength towards saving Arif. If it weren't for them, we might have been those parents that had to struggle to find financial aid to save their child's life.
However, if you as a parent is lucky enough to be called in into IJN, please do know that they have what they call 'Rakan IJN' that will help you in terms of finding finance for your child's operation and even other costs as in medication, milk, diapers and so forth. They even offer emotional support to parents dealing with a child with a heart condition. DO also note that IJN is also supported by the government, whereby if the parents do not have financial assistance, with proper documentation, IJN would be able to reduce the cost of the operation or be able to allow you to pay the operation cost as a loan based, meaning you can pay bit by bit within a specific period.
I am grateful that Arif has no other health conditions or any other complications other than the hole in his heart. If there were... it would be riskier for Arif.
I am grateful that after 6 weeks post operation, Arif is now clear from any heart condition and is therefore be able to be called a normal healthy baby. Alhamdulillah... For Allah is the Greates and Most Merciful.
If you were to see yourself in IJN the condition, you would understand better. Everyday, the pediatric ward would be full of children with heart conditions. Even the ICU is packed with people. According to sources, 2-3 operations are done a day in IJN towards saving a life of a child with a heart condition. Children all over Malaysia are taken in. Although I understand, some children could not be accepted into the hospital due to the full hose situation.
I am grateful and blessed that I had my family who helped tremendously in terms of finance and strength towards saving Arif. If it weren't for them, we might have been those parents that had to struggle to find financial aid to save their child's life.
However, if you as a parent is lucky enough to be called in into IJN, please do know that they have what they call 'Rakan IJN' that will help you in terms of finding finance for your child's operation and even other costs as in medication, milk, diapers and so forth. They even offer emotional support to parents dealing with a child with a heart condition. DO also note that IJN is also supported by the government, whereby if the parents do not have financial assistance, with proper documentation, IJN would be able to reduce the cost of the operation or be able to allow you to pay the operation cost as a loan based, meaning you can pay bit by bit within a specific period.
I am grateful that Arif has no other health conditions or any other complications other than the hole in his heart. If there were... it would be riskier for Arif.
I am grateful that after 6 weeks post operation, Arif is now clear from any heart condition and is therefore be able to be called a normal healthy baby. Alhamdulillah... For Allah is the Greates and Most Merciful.
Dealing with VSD: Part 3... The news we didn't want to hear.
This is a continuation from my first post on Arif's Congenital condition.
Ever since we found out about Arif's hole in the heart when he was 3 days old, we then decided to stick to the doctors in IJN, particularly Dr. Mazeni Alwi. For every month for the next three months, we went to see him on updates on Arif's condition.
On the second month, the doctor told us that Arif's left ventrical is swollen. This made us worry further. Doctor told us that Arif would have to be on medication and we will need to monitor him closely for any signs of heart failure and that an operation is vital to save him.
So on medication it was. Alhamdulillah, Arif is not a fussy baby and he drank his medicines well without the need to mix it with his milk. There were a few times where he did spit it out, but most of the time, he'll swallow it well.
On the third month of his appointment, we were hoping that Arif's heart would not be as swollen as it was, so that we could at least hold his operation until he was older. But to our dismay, the doctor told us that even with medication, his heart still remained swollen. So the doctor asked us to choose a date not later than 2 months for his surgery. We asked him whether Arif could be inserted with a catheter to close the hole instead of an open heart surgery, alas, doctor told us that Arif's condition required only an open heart surgery. So we set the date to 19th of April. Approximately 6 weeks from his appointment and a week after his 4 month birthday.
Doctor assured us that the operation would be 99% successful, but as any normal parent would be.. we could only think of that 1% of the possibility that the operation would NOT be successful.
God knows how I felt. There was a moment where I thought 'Don't love Arif too much... he belongs to Allah, Allah could take Arif away anytime'. Every night from the day the doctor told us Arif would need to be operated, I couldn't sleep well. I would wake up easily at night and ever so often take a look at Arif, making sure he was still breathing and he wasn't turning blue. If you were to ask other people, I looked completely calm and normal, but in my mind and in my heart, I was very very worried about Arif.
The doctor advice us to make sure Arif does not get a cold or a flu prior to his operation as it may postpone his operation as well as it could be very risky for Arif's health. you could imagine how we took care of Arif. Making sure we brought him to places that were not too congested, making sure family members who were sick didn't touch him or be close to him. I knew we had to hurt some people's feelings for doing so... but we had to protect our baby most importantly.
But if you were to look at Arif, he looked like any normal healthy baby. If we didn't tell anyone, no one would know that he was actually sick. He was active and cheerful... the only thing noticeable was his heavy breathing and rapid heart rate.
Here are some pictures of Arif as he grew up prior to his operation date. Will write about his operation on another post.
Ever since we found out about Arif's hole in the heart when he was 3 days old, we then decided to stick to the doctors in IJN, particularly Dr. Mazeni Alwi. For every month for the next three months, we went to see him on updates on Arif's condition.
On the second month, the doctor told us that Arif's left ventrical is swollen. This made us worry further. Doctor told us that Arif would have to be on medication and we will need to monitor him closely for any signs of heart failure and that an operation is vital to save him.
So on medication it was. Alhamdulillah, Arif is not a fussy baby and he drank his medicines well without the need to mix it with his milk. There were a few times where he did spit it out, but most of the time, he'll swallow it well.
On the third month of his appointment, we were hoping that Arif's heart would not be as swollen as it was, so that we could at least hold his operation until he was older. But to our dismay, the doctor told us that even with medication, his heart still remained swollen. So the doctor asked us to choose a date not later than 2 months for his surgery. We asked him whether Arif could be inserted with a catheter to close the hole instead of an open heart surgery, alas, doctor told us that Arif's condition required only an open heart surgery. So we set the date to 19th of April. Approximately 6 weeks from his appointment and a week after his 4 month birthday.
Doctor assured us that the operation would be 99% successful, but as any normal parent would be.. we could only think of that 1% of the possibility that the operation would NOT be successful.
God knows how I felt. There was a moment where I thought 'Don't love Arif too much... he belongs to Allah, Allah could take Arif away anytime'. Every night from the day the doctor told us Arif would need to be operated, I couldn't sleep well. I would wake up easily at night and ever so often take a look at Arif, making sure he was still breathing and he wasn't turning blue. If you were to ask other people, I looked completely calm and normal, but in my mind and in my heart, I was very very worried about Arif.
The doctor advice us to make sure Arif does not get a cold or a flu prior to his operation as it may postpone his operation as well as it could be very risky for Arif's health. you could imagine how we took care of Arif. Making sure we brought him to places that were not too congested, making sure family members who were sick didn't touch him or be close to him. I knew we had to hurt some people's feelings for doing so... but we had to protect our baby most importantly.
But if you were to look at Arif, he looked like any normal healthy baby. If we didn't tell anyone, no one would know that he was actually sick. He was active and cheerful... the only thing noticeable was his heavy breathing and rapid heart rate.
Here are some pictures of Arif as he grew up prior to his operation date. Will write about his operation on another post.
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