Since Qadar’s Fontan Procedure in April we were in and out of the hospital, a good 3 – 4 times for having to get chest tubes for the pleural and chylous effusions I shared with you in that section.
When we went back to the hospital for another scheduled chest x-ray to see if there was once again, fluid build in around his lungs. Guess what, it was and we were once again re-admitted, July 6th, 2010, for his 5th insertion Chest Tubes. Qadar cried, I cried. He wanted to go home. I wanted us to go home. He was tired of the hospitalizations; the IV insertions, and food withholdings – as was I.
On July 7th, the morning of the procedure, I had to work. Oh yes, throughout this whole ordeal I indeed had to work and go to school. My father would stay with him during the day, call me and fill me in. After work and school, I would go to the hospital and stay the rest of the evening and night and when my father arrived in the morning, I would go to work. The hospital became my/our second home.
My father called me after the procedure and told me that Qadar was back in his room and was resting comfortably. He called me again saying that the nurse keep coming in checking on him (he was on the 5th floor, the general floor for the cardiac patients). After a while he called me again, he said that one of the respiratory therapists came in and looked at Qadar, he said that he wasn’t looking good and got the nurse. The nurse called the doctor and he said, that they decided to move Qadar from that floor down to the PICU (Pediatric Intensive Care Unit). He said, that they said they were moving him to keep a closer eye on him. I know Qadar, and I know how he can be, by that, I can read between the lines. It was time for me to leave work.
I parked my car at 3:15p and my father called me saying that, they said, “they need you here.” I told him that I had just parked and making my way in. Okay, by this time my heart started beating – you know what I mean. I ran to the PICU, by the time I got off the elevator. I turned, to my left, the service elevator doors open and I see nothing but doctors, respiratory therapists, AP nurses’, and his bedside nurse getting off the elevator surrounding Qadar. I look to my right, my father is getting off the visitor elevator. I’m extremely concerned but I maintain control.
I can see Qadar, one of the nurse’s says, “See, Qadar, there’s mommy.” He turns to me, with a breathing mask on his face. I feel slightly relieved. As they roll pass me, one of them say, “stay right there mom; we’re get him situated in the room and come out and get you.” I’m used to that lingo so I have no problem in obliging. I turn to my father and ask him why he didn’t ride down on the service elevator with them. He said, “that they told him that it wasn’t enough room and to take the other elevator.
Okay, mind you, I’m reading between the lines. I know, as a medical professional they’re trained to minimize the worries of parents. But, a mother’s instinct just know. It takes all of you to come down the elevator with him and you kick grandpa off…yeah, you were expecting something to happen. The what, at the time was still the unknown.
Two minutes tops, I was allowed in his bed space, he was in the first room. I stood at the door, still the same amount of medical personnel in the room with him, one of the nurse’s gestured for me to come closer. Once again, she said, look Qadar there’s mommy. I was at his bedside. I said, “hey, Boobie.” He turned his head looked up at me and said, “Ma.” All of a sudden, I see his eyes roll in the back of his head and I started shouting pointing at him, “SOMETHING’S WRONG! SOMETHING’S WRONG!” All of a sudden the Code button was sounding. I heard shoes running and pounding down the hall to his room. I was moved out of the room. Panicking and inconsolable I was.
One of Qadar’s long time PICU nurse’s, Nicole, was reassigned to be with me and my dad. I was hysterical, he was hysterical- we were no good. Nicole was crying, of course he was her little man, too. Nevertheless, she was definitely stronger than we were. She, became our go-to person, she called my family and extended family told them that Qadar suffered a massive setback and that they all needed to get to the hospital. Those who weren’t in the city she gave continuous updates. She’s definitely a blessing.
She was the person that would go and get updates and comeback and update us. I remember sitting in the corridor adjacent to his room. They put up a curtain so no one could see what was going on in the room. There were so many surgeons, doctors, going in and out. Nicole was comforting me in her arms and a surgeon came by rolling something by that looked like it could have been straight out of a Sci-Fy Flick (she knew who he was).
She said to me, “Sweetie, I need you to understand that Qadar is very, very, very sick.” She said, “That doctor, is the ECMO Doctor and that machine that he just rolled in his room is called an ECMO Machine. I’ll talk about this machine shortly. An explanation, as well, can be found at the end.
When my family arrived the hospital staff was so welcoming they allowed us to take over their conference room and brought in snacks and beverages. The outpouring of support from the staff was absolutely beautiful.
Several hours had passed and the doctors came out to give us an update. They said that Qadar went into cardiac arrest. They said that he had been experiencing arrhythmias and he couldn’t be paced out. They said that he’s been placed on the ECMO machine to try and give his heart some rest. He said that at this point Qadar was in grave condition and there was no way of them knowing if he’d make it out.
They said, although his heart was at rest they couldn’t tell me how much or if at all his brain may have taken a hit. I smiled; I knew that he was Allah’s child and Allah had something in store for him. After a while we were allowed in to see him.
After spending time on ECMO we started to notice his leg swelling, swelling even more, and started to form blisters. An orthopedic surgeon was called in to have a look and after blistering so that the blisters started to burst and his skin falling off and his toes were turning black. He developed Compartment Syndrome, out of concern that he would lose his leg in order to save it They decided to perform two fasciotomies to relieve the pressure. It originally was suppose to be three performed but due to excessive bleeding only two were performed on his inner and outer leg. His toes, no joke, were necrotic (black…dead tissue), the orthopedic surgeon was expecting that he’d lose his toes.
You can’t tell me that Allah doesn’t have something in store for this fighter. Slowly, but surely, after a period of time blood started flowing to his toes. They started getting color. She, the orthopedic surgeon, as well as all of us was amazed at the healing process of his leg over a period of time of course. An explanation of Compartment Syndrome can be found at the end.
The day after, July 8th, they decided to shock his heart to see what underlying rhythm, if any, they could get. His surgeon told me that they shocked his heart at “30 Love”, unfortunately, I don’t know exactly how much power a shock that is to his heart that I can share with you. But, I do know, that when he was shocked at “30 Love”; just once, his underlying heart rhythm came back at 159 bpm (beats per minute). What a miracle this child is. Allah definitely has His hand on him.
About day 2 or 3 being on ECMO, Qadar started experiencing extremely high spikes in his blood pressure and after a minute or two would return to normal. At each, blood pressure spike, the nurse would check his pupils to make sure he wasn’t seizing. She called his doctor in and a neurological test was done to try and monitor his brain activity to see if the was in fact, having seizures. Unfortunately, that was some valuable footage that I recorded and snapped pictures of and lost. His neurological test came back inconclusive because the spikes in his blood pressure weren’t seizures.
So to try and get an idea of the condition of his brain the doctors decided to take him off of sedation to see what type of activity he does on his own. You have to look at the video footage. Now, to show you how I knew my little man was back. Whenever they get ready to take out the breathing tube, they always wait until he’s alert enough to pick up breathing on his own. So prior to that time he’s, of course, in a fuss as you can imagine and tries going for that tube to take it out.
Now, after a while his hand starts wobbling up, and he so weak but that’s not stopping him for going after that tube. Awe man, can you imagine my excitement. My brother-in-law always tells him to give him, “some dap” that’s his slang for fist bump. My sister tells Qadar, “Uncle Bryant says, ‘give him some dap’”. This little man makes a fist. Man, Allah is the Greatest!
His ECMO machine had started clotting by the weekend and they were fearful that possibly Sunday, July 11th, they would have to remove him from the machine. The machine lasted and on Monday, July 12th, he was successfully removed from ECMO. Yay! He is now officially an ECMO Graduate!
He did lose his kidneys for the second time. The ECMO was also removing the excess waste from his kidneys so now that he’s no longer on ECMO he underwent surgery so that he could receive hemodialysis.
As his health improved, he was removed from hemodialysis to peritoneal dialysis. I was expected to be trained on how to work the machine and how to connect him because he was expected to go home on dialysis. The day of my training, it was also Day 1 of Ramadan, August 11th – His kidneys came back! All Praises are due to Allah! I never received the training.
I really tried to share every single event that I could regarding this experience to share with you what he has gone through and how much Allah is with him. The overwhelming care and support from every single hospital staff that had a hand in his care was just absolutely beautiful.
His nurse, Nicole who has been his nurse ever since we met her when he was admitted for the aneurysm, made sure that he had experienced the best 4th birthday ever. All of the pictures that you see from his birthday she coordinated, arranged, made the Lightening McQueen birthday cake herself, and bought the decorations. On August 28th, Qadar had a huge birthday celebration that he gave an all new meaning too.
The Head of the Cardiovascular-Thoracic Surgery Department, Dr. Backer and his family personally bought Qadar the Caterpillar Birthday Cake that’s also in the picture. Many of his surgeons, doctors’, nurses, and other support staff came to his room to offer their birthday greetings and give him gifts. The 5th Floor Family Life Center staff made the green poster board with the lion on it. They walked around and so many of the medical and support staff on the 5th Floor signed it and presented to him for his birthday. This little fighter attracts love and attention wherever he goes.
I forgot to mention that he ended up with paralyses to his right vocal chord so when he was finally able to take in liquids he would choke. He ended up having to have a NG Tube inserted (when you look at his pictures, that’s the tube that is coming out of his nose). That was how he was able to eat. Also, developed oral aversion – he wouldn’t put any food type substance in his mouth. After about 3-6 months of having us, undertake the horrendous task of having to put it in he was scheduled to have a G-Tube procedure done.
What is an ECMO Machine?
An, Extracorporeal Membrane Oxygenation, or ECMO Machine is a technique of providing both cardiac and respiratory support to patients whose heart and lungs are so severely damaged that they can no longer serve their function.
The hospital gave me a book on the ECMO and I tried to break it down from there. But, I found that wiseGEEK put it in layman’s terms so to that end I’ll let them explain the process, their explanation is as follows,
“ECMO is an acronym for extracorporeal membrane oxygenation. As the name implies, it refers to the delivery of oxygen by “extracorporeal” measures, and literally means by mechanical bypass that takes place outside of the body. Toward that end, an ECMO machine is a medical device that performs this task. In fact, it is very similar to a heart-lung machine that is used to continue the supply of blood and oxygen while the heart is stopped, such as during open heart surgery. ECMO therapy, however, is intended for patients whose heart and lungs cannot normally function on their own.
Patients receive ECMO in the intensive care unit of a hospital, where medical personnel specially trained in respiratory therapy can continuously monitor them. The process begins with dispensing an anticoagulant to the patient to minimize clotting of the blood. This is necessary because the patient’s blood must pass through a tube to the ECMO machine where it can be oxygenated by an artificial lung and be returned. The machine further simulates human respiration by removing carbon dioxide from the blood. The patient remains placed on the machine until his or her own heart and/or lungs can resume normal functioning.”
What is Compartment Syndrome?
Wikipedia did pretty good at explaining what compartment syndrome is its, “when there is not a sufficient amount of blood to supply the muscles and nerves with oxygen and nutrients because of the raised pressure within the compartment such as the arm, leg or any enclosed space within the body and leads to nerve damage because of the lack of blood supply.”
What is a Fasciotomy?
Here is Wikipedia’s explanation of what a fasciotomy is. It is, “a surgical procedure where the fascia (layer of fibrous tissue) is cut to relieve tension or pressure commonly to treat the resulting loss of circulation to an area of tissue or muscle. Fasciotomy is a limb-saving procedure when used to treat acute compartment syndrome.
Cardiac Arrest Footage
Cardiac Arrest Footage
Jul 6 2010
Cardiac Arrest
DCIM100MEDIA
DCIM100MEDIA
When we went back to the hospital for another scheduled chest x-ray to see if there was once again, fluid build in around his lungs. Guess what, it was and we were once again re-admitted, July 6th, 2010, for his 5th insertion Chest Tubes. Qadar cried, I cried. He wanted to go home. I wanted us to go home. He was tired of the hospitalizations; the IV insertions, and food withholdings – as was I.
On July 7th, the morning of the procedure, I had to work. Oh yes, throughout this whole ordeal I indeed had to work and go to school. My father would stay with him during the day, call me and fill me in. After work and school, I would go to the hospital and stay the rest of the evening and night and when my father arrived in the morning, I would go to work. The hospital became my/our second home.
My father called me after the procedure and told me that Qadar was back in his room and was resting comfortably. He called me again saying that the nurse keep coming in checking on him (he was on the 5th floor, the general floor for the cardiac patients). After a while he called me again, he said that one of the respiratory therapists came in and looked at Qadar, he said that he wasn’t looking good and got the nurse. The nurse called the doctor and he said, that they decided to move Qadar from that floor down to the PICU (Pediatric Intensive Care Unit). He said, that they said they were moving him to keep a closer eye on him. I know Qadar, and I know how he can be, by that, I can read between the lines. It was time for me to leave work.
I parked my car at 3:15p and my father called me saying that, they said, “they need you here.” I told him that I had just parked and making my way in. Okay, by this time my heart started beating – you know what I mean. I ran to the PICU, by the time I got off the elevator. I turned, to my left, the service elevator doors open and I see nothing but doctors, respiratory therapists, AP nurses’, and his bedside nurse getting off the elevator surrounding Qadar. I look to my right, my father is getting off the visitor elevator. I’m extremely concerned but I maintain control.
I can see Qadar, one of the nurse’s says, “See, Qadar, there’s mommy.” He turns to me, with a breathing mask on his face. I feel slightly relieved. As they roll pass me, one of them say, “stay right there mom; we’re get him situated in the room and come out and get you.” I’m used to that lingo so I have no problem in obliging. I turn to my father and ask him why he didn’t ride down on the service elevator with them. He said, “that they told him that it wasn’t enough room and to take the other elevator.
Okay, mind you, I’m reading between the lines. I know, as a medical professional they’re trained to minimize the worries of parents. But, a mother’s instinct just know. It takes all of you to come down the elevator with him and you kick grandpa off…yeah, you were expecting something to happen. The what, at the time was still the unknown.
Two minutes tops, I was allowed in his bed space, he was in the first room. I stood at the door, still the same amount of medical personnel in the room with him, one of the nurse’s gestured for me to come closer. Once again, she said, look Qadar there’s mommy. I was at his bedside. I said, “hey, Boobie.” He turned his head looked up at me and said, “Ma.” All of a sudden, I see his eyes roll in the back of his head and I started shouting pointing at him, “SOMETHING’S WRONG! SOMETHING’S WRONG!” All of a sudden the Code button was sounding. I heard shoes running and pounding down the hall to his room. I was moved out of the room. Panicking and inconsolable I was.
One of Qadar’s long time PICU nurse’s, Nicole, was reassigned to be with me and my dad. I was hysterical, he was hysterical- we were no good. Nicole was crying, of course he was her little man, too. Nevertheless, she was definitely stronger than we were. She, became our go-to person, she called my family and extended family told them that Qadar suffered a massive setback and that they all needed to get to the hospital. Those who weren’t in the city she gave continuous updates. She’s definitely a blessing.
She was the person that would go and get updates and comeback and update us. I remember sitting in the corridor adjacent to his room. They put up a curtain so no one could see what was going on in the room. There were so many surgeons, doctors, going in and out. Nicole was comforting me in her arms and a surgeon came by rolling something by that looked like it could have been straight out of a Sci-Fy Flick (she knew who he was).
She said to me, “Sweetie, I need you to understand that Qadar is very, very, very sick.” She said, “That doctor, is the ECMO Doctor and that machine that he just rolled in his room is called an ECMO Machine. I’ll talk about this machine shortly. An explanation, as well, can be found at the end.
When my family arrived the hospital staff was so welcoming they allowed us to take over their conference room and brought in snacks and beverages. The outpouring of support from the staff was absolutely beautiful.
Several hours had passed and the doctors came out to give us an update. They said that Qadar went into cardiac arrest. They said that he had been experiencing arrhythmias and he couldn’t be paced out. They said that he’s been placed on the ECMO machine to try and give his heart some rest. He said that at this point Qadar was in grave condition and there was no way of them knowing if he’d make it out.
They said, although his heart was at rest they couldn’t tell me how much or if at all his brain may have taken a hit. I smiled; I knew that he was Allah’s child and Allah had something in store for him. After a while we were allowed in to see him.
After spending time on ECMO we started to notice his leg swelling, swelling even more, and started to form blisters. An orthopedic surgeon was called in to have a look and after blistering so that the blisters started to burst and his skin falling off and his toes were turning black. He developed Compartment Syndrome, out of concern that he would lose his leg in order to save it They decided to perform two fasciotomies to relieve the pressure. It originally was suppose to be three performed but due to excessive bleeding only two were performed on his inner and outer leg. His toes, no joke, were necrotic (black…dead tissue), the orthopedic surgeon was expecting that he’d lose his toes.
You can’t tell me that Allah doesn’t have something in store for this fighter. Slowly, but surely, after a period of time blood started flowing to his toes. They started getting color. She, the orthopedic surgeon, as well as all of us was amazed at the healing process of his leg over a period of time of course. An explanation of Compartment Syndrome can be found at the end.
The day after, July 8th, they decided to shock his heart to see what underlying rhythm, if any, they could get. His surgeon told me that they shocked his heart at “30 Love”, unfortunately, I don’t know exactly how much power a shock that is to his heart that I can share with you. But, I do know, that when he was shocked at “30 Love”; just once, his underlying heart rhythm came back at 159 bpm (beats per minute). What a miracle this child is. Allah definitely has His hand on him.
About day 2 or 3 being on ECMO, Qadar started experiencing extremely high spikes in his blood pressure and after a minute or two would return to normal. At each, blood pressure spike, the nurse would check his pupils to make sure he wasn’t seizing. She called his doctor in and a neurological test was done to try and monitor his brain activity to see if the was in fact, having seizures. Unfortunately, that was some valuable footage that I recorded and snapped pictures of and lost. His neurological test came back inconclusive because the spikes in his blood pressure weren’t seizures.
So to try and get an idea of the condition of his brain the doctors decided to take him off of sedation to see what type of activity he does on his own. You have to look at the video footage. Now, to show you how I knew my little man was back. Whenever they get ready to take out the breathing tube, they always wait until he’s alert enough to pick up breathing on his own. So prior to that time he’s, of course, in a fuss as you can imagine and tries going for that tube to take it out.
Now, after a while his hand starts wobbling up, and he so weak but that’s not stopping him for going after that tube. Awe man, can you imagine my excitement. My brother-in-law always tells him to give him, “some dap” that’s his slang for fist bump. My sister tells Qadar, “Uncle Bryant says, ‘give him some dap’”. This little man makes a fist. Man, Allah is the Greatest!
His ECMO machine had started clotting by the weekend and they were fearful that possibly Sunday, July 11th, they would have to remove him from the machine. The machine lasted and on Monday, July 12th, he was successfully removed from ECMO. Yay! He is now officially an ECMO Graduate!
He did lose his kidneys for the second time. The ECMO was also removing the excess waste from his kidneys so now that he’s no longer on ECMO he underwent surgery so that he could receive hemodialysis.
As his health improved, he was removed from hemodialysis to peritoneal dialysis. I was expected to be trained on how to work the machine and how to connect him because he was expected to go home on dialysis. The day of my training, it was also Day 1 of Ramadan, August 11th – His kidneys came back! All Praises are due to Allah! I never received the training.
I really tried to share every single event that I could regarding this experience to share with you what he has gone through and how much Allah is with him. The overwhelming care and support from every single hospital staff that had a hand in his care was just absolutely beautiful.
His nurse, Nicole who has been his nurse ever since we met her when he was admitted for the aneurysm, made sure that he had experienced the best 4th birthday ever. All of the pictures that you see from his birthday she coordinated, arranged, made the Lightening McQueen birthday cake herself, and bought the decorations. On August 28th, Qadar had a huge birthday celebration that he gave an all new meaning too.
The Head of the Cardiovascular-Thoracic Surgery Department, Dr. Backer and his family personally bought Qadar the Caterpillar Birthday Cake that’s also in the picture. Many of his surgeons, doctors’, nurses, and other support staff came to his room to offer their birthday greetings and give him gifts. The 5th Floor Family Life Center staff made the green poster board with the lion on it. They walked around and so many of the medical and support staff on the 5th Floor signed it and presented to him for his birthday. This little fighter attracts love and attention wherever he goes.
I forgot to mention that he ended up with paralyses to his right vocal chord so when he was finally able to take in liquids he would choke. He ended up having to have a NG Tube inserted (when you look at his pictures, that’s the tube that is coming out of his nose). That was how he was able to eat. Also, developed oral aversion – he wouldn’t put any food type substance in his mouth. After about 3-6 months of having us, undertake the horrendous task of having to put it in he was scheduled to have a G-Tube procedure done.
What is an ECMO Machine?
An, Extracorporeal Membrane Oxygenation, or ECMO Machine is a technique of providing both cardiac and respiratory support to patients whose heart and lungs are so severely damaged that they can no longer serve their function.
The hospital gave me a book on the ECMO and I tried to break it down from there. But, I found that wiseGEEK put it in layman’s terms so to that end I’ll let them explain the process, their explanation is as follows,
“ECMO is an acronym for extracorporeal membrane oxygenation. As the name implies, it refers to the delivery of oxygen by “extracorporeal” measures, and literally means by mechanical bypass that takes place outside of the body. Toward that end, an ECMO machine is a medical device that performs this task. In fact, it is very similar to a heart-lung machine that is used to continue the supply of blood and oxygen while the heart is stopped, such as during open heart surgery. ECMO therapy, however, is intended for patients whose heart and lungs cannot normally function on their own.
Patients receive ECMO in the intensive care unit of a hospital, where medical personnel specially trained in respiratory therapy can continuously monitor them. The process begins with dispensing an anticoagulant to the patient to minimize clotting of the blood. This is necessary because the patient’s blood must pass through a tube to the ECMO machine where it can be oxygenated by an artificial lung and be returned. The machine further simulates human respiration by removing carbon dioxide from the blood. The patient remains placed on the machine until his or her own heart and/or lungs can resume normal functioning.”
What is Compartment Syndrome?
Wikipedia did pretty good at explaining what compartment syndrome is its, “when there is not a sufficient amount of blood to supply the muscles and nerves with oxygen and nutrients because of the raised pressure within the compartment such as the arm, leg or any enclosed space within the body and leads to nerve damage because of the lack of blood supply.”
What is a Fasciotomy?
Here is Wikipedia’s explanation of what a fasciotomy is. It is, “a surgical procedure where the fascia (layer of fibrous tissue) is cut to relieve tension or pressure commonly to treat the resulting loss of circulation to an area of tissue or muscle. Fasciotomy is a limb-saving procedure when used to treat acute compartment syndrome.
Cardiac Arrest Footage
Cardiac Arrest Footage
By Qadar's mom • Blog, Featured, The Journey • 0 • Tags: Cardiac Arrest, Children's Memorial, Complication, HLHS, Qadar, Readmitted, Surgery