To those of you that know me, or even if you don't personally know me, but have read my blog in the past, you know that my oldest son has a heart condition. Last April he had his third open heart surgery to replace both his aortic valve and his pulmonary valve. Actually, they took his pulmonary valve and moved it to the aortic valve position, and they replaced his pulmonary valve with a donor valve. While performing the procedure, his surgeon saw that his pulmonary valve was bicuspid (has two leaflets instead of the three that a normal valve would have). Normally at this point, in this particular procedure, you'd abandon that procedure and move forward with another plan. Cain's surgeon felt like the valve was in good enough condition to be able to use it successfully.
After the surgery, my son did incredibly well with the healing. He was home a few days later, walking around, and stopped taking his pain pills. We thought that things were great until he went for his follow up a few weeks later where they found that both valves were partially obstructed. When I say obstructed, I don't mean there was something in there obstructing it, but the valves had thickened significantly so the blood was not flowing through at 100%. Also, we were told that the arrhythmia's that they expected to go away after surgery were still present. They felt that with time, they'd still go away, once his heart had healed and it was used to having fully functioning valves. We were told we'd continue to follow up every few weeks to keep an eye on it.
A few appointments later and a few at home heart monitors later, they realized the arrhythmia's weren't going away and put him on a daily beta blocker. At the next appointment there was still no change so we increased the dosage, but even with that, there was no change. He was having an arrhythmia with every single heartbeat.
Two weeks ago, I got a call from his cardiologist and he told me that at this point, if we do nothing these arrhythmia's will cause long term damage. He said they have to do another heart cath and cardiac ablation. (Cardiac ablation works by scarring or destroying tissue in your heart that triggers an abnormal heart rhythm. In some cases, ablation prevents abnormal electrical signals from traveling through your heart and thus stops the arrhythmia.).
I have high hopes of this working for my son. I cannot adequately explain what it feels like to see him struggle to breathe after minimal physical exertion. Walking up a flight of stairs leaves my 11 year old gasping for breath like someone who has been smoking for years. He cannot keep up with other kids physically and he cannot play sports, the one thing in life he REALLY desires. If this doesn't work, I have no idea what the next step is. I asked them not to tell me because now I am just owning that this will be the procedure to get him back to a healthy kid. I can't think about what ifs at this moment.
Cain isn't scared at all. He never is. He always takes things as they come and he has a very positive outlook on life. He is such a trooper and although I HATE that he has to go through this and he has to miss out on activities due to his heart, I know that having a heart problem has taught him to be strong.
Sunday, April 14, 2013
Monday, March 25, 2013
Rest in Peace, Mom 6/18/44 - 3/3/13
On March 3 my life changed forever. I lost my mom. The days since have been a blur. I've busied myself with tasks around the house, as if keeping busy would somehow speed up the grieving process, or make me forget, but it hasn't. There is no forgetting. There are moments where I don't cry, there have even been a few where I've laughed, but not a day goes by - hell not an hour goes by where I don't think about her. I think how I'll never hear her voice again. How I'll never see her smile again. How I'll never see the excitement in her eyes when I tell her something the kids have accomplished. I wonder if I was a good enough daughter, and I beat myself up that I didn't visit her more often, or how at times I'd be "too busy" to answer her call. I hate myself for taking her for granted, and at times I hate myself for wishing she was here, because in the end, I know she was miserable. She was in constant pain and was ready to die, yet she held on - I believe, for us. I feel selfish for wanting her to be in pain so I can have her here alive, rather than being at peace in heaven. I'm so sad my 4 year old will likely not remember her at all. I feel sorry for him. I feel sorry for my 11 year old because they were so close and I know he's struggling with the loss of her.
On March 3 when I arrived at the hospital, my mom was in the bed, and didn't seem to know I was there. She was mumbling and looking at the ceiling. I was screaming at her to look at me. I kept saying, "mom, do you know who I am", "mom, can you hear me", "mom, answer me". All I understood through her mumbling was "the kids". I told her, "mom the kids are good, do you understand". She didn't acknowledge me at all. Finally, when they told me that they needed to ask me to step out so they could intubate her, I grabbed her face and made her look me in the eyes and I yelled, "MOM, I LOVE YOU. I NEED YOU TO KNOW I LOVE YOU. I CAN'T GO UNTIL YOU TELL ME YOU LOVE ME". She looked me right in the eyes and said, "I LOVE YOU". That was the last thing my mother ever said.
My entire family was at the hospital and the boys were able to hold their Nana's hand and tell her they love her, they kissed her and when you'd yell at her to squeeze their hand, she would. I know she knew we were all with her, even though she was on a lot of medicine and on the ventilator. I am so very thankful that my mom held on so that the boys could say goodbye. I hate that their last memory will be her in the hospital, but I am glad she was able to squeeze their hand to let them know she loved them. It was shortly after the boys said goodbye that she passed. It was traumatic for me and my sisters to see. It was the absolute worst day of my life.
The second worse day was the day we buried her, Wednesday, March 6. It was overcast and gray outside. It was freezing. On the drive from the funeral home to the cemetery, we had the Quran playing in the car and I remember saying to Zouhair that it was a perfectly sad day to bury my mom. The weather was gloomy and cold and matched my mood perfectly. Arriving at the graveside service, and seeing my nephews and my son carry her casket to the grave was almost more than I could take. The funeral itself is a blur. I was just looking from the casket to my kids to my husband in between my sobs. At one point I had to keep myself from running away. Shortly after the funeral my 11 year old broke down in tears and I felt like I couldn't even properly comfort him at the moment because I too was hurting so much.
The days that followed were no easier. Today, three weeks later, I'm still in shock my mom is gone. I go through my phone and see the times we talked. I think about how regardless of the pain she was in, she'd call on birthdays and holidays. She thought first of her kids and her grandkids. My mom was not perfect, but looking back, she'd help anyone, she'd think first of others, and she generally always had a smile on her face. She loved her kids and grandkids and wanted nothing but our happiness. She lived to see us thrive. Her life was not fair. As long as I remember she had a hard time and the past ten years were pure hell due to her health. How she managed as long as she did, I will never know. She was stronger than I am, and she was a great example at how to keep on keeping on.
I choose to believe my mom is in heaven with her parents, her sister, and my brother. It's what keeps me going. I imagine her walking and dancing and being happy - for once, for herself. I don't know how heaven works exactly. I don't know if she sees us crying and suffering from missing her, but at times, I hope she doesn't. I want for her to be at peace and pain free. I want for her to be reunited with the son she lost so long ago.
The daily reminders will continue. I imagine I'm going to lose it on Mothers Day and on her birthday and a hundred times in between. Hell I've lost it at work, at Wal-Mart, driving in my car, at the dinner table, waking up in the middle of the night. It almost seems like its getting worse most of the time. I don't think I'll ever "get over" her death. I realize that at 32, I will likely live longer without a mom than I did with one. I hope that one day though, I can think of her and smile instead of crumbling.
On March 3 when I arrived at the hospital, my mom was in the bed, and didn't seem to know I was there. She was mumbling and looking at the ceiling. I was screaming at her to look at me. I kept saying, "mom, do you know who I am", "mom, can you hear me", "mom, answer me". All I understood through her mumbling was "the kids". I told her, "mom the kids are good, do you understand". She didn't acknowledge me at all. Finally, when they told me that they needed to ask me to step out so they could intubate her, I grabbed her face and made her look me in the eyes and I yelled, "MOM, I LOVE YOU. I NEED YOU TO KNOW I LOVE YOU. I CAN'T GO UNTIL YOU TELL ME YOU LOVE ME". She looked me right in the eyes and said, "I LOVE YOU". That was the last thing my mother ever said.
My entire family was at the hospital and the boys were able to hold their Nana's hand and tell her they love her, they kissed her and when you'd yell at her to squeeze their hand, she would. I know she knew we were all with her, even though she was on a lot of medicine and on the ventilator. I am so very thankful that my mom held on so that the boys could say goodbye. I hate that their last memory will be her in the hospital, but I am glad she was able to squeeze their hand to let them know she loved them. It was shortly after the boys said goodbye that she passed. It was traumatic for me and my sisters to see. It was the absolute worst day of my life.
The second worse day was the day we buried her, Wednesday, March 6. It was overcast and gray outside. It was freezing. On the drive from the funeral home to the cemetery, we had the Quran playing in the car and I remember saying to Zouhair that it was a perfectly sad day to bury my mom. The weather was gloomy and cold and matched my mood perfectly. Arriving at the graveside service, and seeing my nephews and my son carry her casket to the grave was almost more than I could take. The funeral itself is a blur. I was just looking from the casket to my kids to my husband in between my sobs. At one point I had to keep myself from running away. Shortly after the funeral my 11 year old broke down in tears and I felt like I couldn't even properly comfort him at the moment because I too was hurting so much.
The days that followed were no easier. Today, three weeks later, I'm still in shock my mom is gone. I go through my phone and see the times we talked. I think about how regardless of the pain she was in, she'd call on birthdays and holidays. She thought first of her kids and her grandkids. My mom was not perfect, but looking back, she'd help anyone, she'd think first of others, and she generally always had a smile on her face. She loved her kids and grandkids and wanted nothing but our happiness. She lived to see us thrive. Her life was not fair. As long as I remember she had a hard time and the past ten years were pure hell due to her health. How she managed as long as she did, I will never know. She was stronger than I am, and she was a great example at how to keep on keeping on.
I choose to believe my mom is in heaven with her parents, her sister, and my brother. It's what keeps me going. I imagine her walking and dancing and being happy - for once, for herself. I don't know how heaven works exactly. I don't know if she sees us crying and suffering from missing her, but at times, I hope she doesn't. I want for her to be at peace and pain free. I want for her to be reunited with the son she lost so long ago.
The daily reminders will continue. I imagine I'm going to lose it on Mothers Day and on her birthday and a hundred times in between. Hell I've lost it at work, at Wal-Mart, driving in my car, at the dinner table, waking up in the middle of the night. It almost seems like its getting worse most of the time. I don't think I'll ever "get over" her death. I realize that at 32, I will likely live longer without a mom than I did with one. I hope that one day though, I can think of her and smile instead of crumbling.
Sunday, April 15, 2012
The Time Has Come...
Well, almost. I am going to use this post to update throughout the surgery. One of the nurses from the OR is supposed to call every hour to hour and a half with updates. This surgery can last up to 12 hours, so there may be several posts throughout the day. I felt this was the easiest way to update everyone at once, as it will be difficult to call/text/email everyone every time, and I don't want to leave anyone out. I appreciate every single person that has shown concern for Cain. He is so very special and loved by many. The least I can do is let you know how he's progressing. You can bookmark this post and check back as you'd like.
April 16, 2012
Update 1: We got on the road at 5am and arrived at 6. They took us back fairly quickly and asked all the usual questions: What time did you last eat? What time did you last drink? Any changes over the weekend in your health? At 6:35 everything was answered, so the nurse brought Cain two dosing cups of medicine.
One to make him sleep, one to dry up bronchial secretions. The medicines were Pentobarbital, Demerol, and Atropine. Fifteen minutes later Cain said he was tired and rolled over to sleep. At 7:25 the anesthesiologist and one of the surgical nurses came in to tell us it was time. We gave him big hugs and kisses (although he was asleep) and they rolled him out of the room and over to the OR.
Update 2: 8:55am, they've just made the first incision and will have an update in about an hour. Not to be too graphic, but they'll be sawing his sternum and then opening the sternum and ribs to see the heart.I'm not positive, but I believe this is the point they'll put him on the heart-lung machine, so the surgeon can stop his heart to work on it. I hope that with the next update they'll be able to tell me whether they're going to be able to move forward with The Ross Procedure, or if he'll have to have the mechanical valve. Please pray hard that he doesn't have to get that mechanical valve.
Update 3: 10:10am, Cain has just been placed on bypass. They do not know yet what procedure they're going to do. It may be another hour or hour and a half before they're able to make a decision.
Update 4: 11:10am, Thank God, they are doing The Ross Procedure!!!
Update 5: 12:30pm, Wow! They have already moved the pulmonary valve to the aortic valve position and are currently working on attaching the homograft to the pulmonary valve position. I am so happy!
Update 6: 3:00pm. Spoke with the surgeon. He was actually surprised that not only is Cain's aortic valve bi-cuspid, but his pulmonary valve is as well, which is quite unusual. He said that the procedure went as well as they could expect. He isn't sure that the valve will last 50 years, but its working now. They are transferring him to the Cardiac ICU and we will be able to see him in an hour.
Update 7: We were able to go in and see Cain. He is currently on a ventilator and has an external pacemaker. His ICU nurse was great and explained everything to us. He has two large drainage tubes coming out of the bottom of his chest. They cut through the original incision scar so there will be no additional scarring there, however with the drainage tubes they had to make two additional incisions to the five he already has. He has a central line in his neck area, an IV in both arms and an arterial (I think that's what they called it, I am entirely too tired to google right now) IV in his wrist area. And some kind of line in his stomach so they can give medicines and monitor something or another. He also has a tube through his nose for suctioning and he has a catheter. When I saw Cain he was asleep but was opening his eyes a bit and was able to understand what was being asked. When the nurse said, "Cain your parents are here" he started turning his head to look for us and attempted to talk, which he couldn't because of the ventilator. That's where I lost it, I just couldn't keep it together any longer. He was given morphine and fell right back to sleep.
When we first arrived we asked the cardiologist in the ICU what was going on with the bicuspid pulmonary valve that is now in the aortic position. I wanted to know what it meant that it only had two leafs instead of three. The cardiologist told us, "honestly, it is so rare for a ross to be done with a bicuspid pulmonary valve, that I don't have an answer for you. I'm not even sure there is literature on it, so I will work to find out if there is any information I can give you, but for now it's working". The arrhythmia's are still there, which we were told to expect, however his heartbeat is irregular and they needed the external pacemaker to pace the heartbeat. His blood pressure is stable and his glucose is a little high, but he was given insulin to bring it down. I asked the nurse if she could just tell me, based on what she knows about the ross procedure, was Cain doing as well as other kids. She said he was doing great and that they expected him to be removed from the ventilator sometime in the morning.
For now, the hospital was gracious enough to offer me a room to sleep in so I could be here throughout the night. The room is tiny but it has a bed and I am so very tired. The ICU nurse will be sure to call me if there are any changes while I sleep. It's been an incredibly long day and although things went fairly good, there are new worries with this valve that also has a defect. I will try to rest a bit and spend a good portion of my time researching this situation.
Thanks for following us today and praying for cain. I will update tomorrow as I have new information.
April 17, 2012
Update 8: I was able to see Cain last night around midnight (for the first time since 5:30). I'd kept calling after shift change, but the nurse told me Cain was very agitated. He was trying to get his breathing tube out with his tongue. His blood gas was too high (or too low, whichever is bad), and he was still retaining too much fluid. At midnight she called me to tell me they had taken the breathing tube out and I could come see him. I ran down there and he was awake. He smiled when he saw me and then started crying and said it hurts so bad every time I take a breath. The nurse went to get Morphine for him and I told Cain not to wait for me to say if he's in pain. That the nurse was there to help him and he needed to ask whenever he was uncomfortable. He said ok. Once the morphine kicked in he asked me if he could have his Edible Arrangement that his nanna told him he'd get, and he asked me where his quarters were for the vending machine, and he asked the nurse if he could walk to the teen room to play video games. Apparently he's hungry, but cannot yet eat. His nurse told him she'd have them bring a mobile video game cart to his bed in the morning. Cain wanted to hold hands with me and asked me to stay for a while. I stayed for a few hours until he was sleeping good and I got a few hours of sleep. It's now 7:30am and I've already been down to sign up to be present at morning rounds. I have questions about the valve that they used. Everything on the internet said you don't use a bicuspid pulmonary valve in the ross procedure. So, I'm uncertain why one of the best surgeons in the country did that. Obviously he has his reasons, but as of this moment I don't know why.
Update 9: I went to the doctors rounds, which was fine. I mean, it wouldn't have been a big deal to miss it. They said he was doing good, but continues to need the pacemaker for the time being. They are moving him out of the ICU and into a regular room in a few hours. I just used this opportunity to talk to Cain a little bit and give him a kiss before I got kicked out again. He's still in pain, which is to be expected, but he wasn't crying, just couldn't really move much and said it wasn't just his incision that hurt, he said his ribs hurt and generally his whole chest area. I didn't explain why, other than to tell him this was normal with open heart surgery. I will, hopefully, have a chance to talk to his surgeon tonight when he does rounds, as he was in surgery during this mornings rounds.
Update 10: At 10am my sister and I were able to go in and see Cain. I stopped to talk to the nurse while my sister went over to Cain. He told her he was in terrible pain. I went over and he was crying and moaning. He was having a hard time breathing due to the pain associated with it. He was very upset and couldn't calm himself down. The chest tube is quite large and is in between his lung and chest wall. The area gets irritated on both sides of the tube and it is painful. Even the Morphine was not helping. The nurse asked my sister to leave so they could get him more medicine and get him more comfortable. When she mentioned me leaving Cain grabbed my hand and his eyes got big. It is so hard to walk away from your child when you know they need and want you, and so hard at the same time to know that your staying there will not help in the littlest. I walked back to the waiting room while bawling my eyes out. This has been harder than I remember.
About 12 they moved him to a regular room in the Cardiac Unit. Cain was getting situated and was asking about food. We're not sure if he has a mosquito bite on his back or the morphine is making him itch, but he's constantly asking for me to scratch his back, which is difficult as he's laying on it. I do manage though, but shortly after arriving in the room while I was scratching his back, he said in a panicked voice, "mom, my armpit hurts, my armpit hurts, my armpit hurts" getting louder with each time it came out of his mouth until it turned into blood curdling screams. I ran and got the nurse and several nurses came in. He was demanding ice. I had to leave because I was thisclose to losing it with the head nurse who acted as if he was annoying her with his demand for ice. My sister stayed and my husband was just coming in. I stayed out for about 10 minutes and when I came back he was a bit more calm. The nurse practitioner told me that it was the pain from the chest tube that was radiating into his armpit and upper back area. They said it is very painful and their plan was just to give him pain medicine on schedule as opposed to waiting until he needed it. Every few minutes it would hurt again and he would cry in pain. It is incredibly hard to see him go through this and I would gladly take his place. No one should ever have see their kid like this.
April 18, 2012
Update 11: Last night Zouhair stayed the night at the hospital so I could go home with Zayd and get some rest. Through the night Cain had several episodes of extreme pain, but with repositioning and ice, he's been able to get through them. They removed his large white bandage from the incision and its now just covered with Steri-Strip's. The incision looks really good and I'm certain that when it heals the scar will look fairly close to what it looked like prior to surgery. Cain's white blood count is a bit low, for now they're monitoring it to see if it will come up on his own, if not, he'll need a blood transfusion. He's had probably 100+ blood transfusions in his life, so this is no problem. They are going to put him on a morphine pump shortly, so that he will be able to push the button to administer morphine to himself as he needs it. He was able to stand up for a bit just to step on the scale and get his weight. He said his feet hurt which is normal, but they're insistent that he get up today to walk a bit. He's pretty hesitant to do that, I think he's afraid it will hurt too much, but I know he will at the very least, try. He is really being so brave and I am so inspired at the way he is handling himself.
April 16, 2012
Update 1: We got on the road at 5am and arrived at 6. They took us back fairly quickly and asked all the usual questions: What time did you last eat? What time did you last drink? Any changes over the weekend in your health? At 6:35 everything was answered, so the nurse brought Cain two dosing cups of medicine.
One to make him sleep, one to dry up bronchial secretions. The medicines were Pentobarbital, Demerol, and Atropine. Fifteen minutes later Cain said he was tired and rolled over to sleep. At 7:25 the anesthesiologist and one of the surgical nurses came in to tell us it was time. We gave him big hugs and kisses (although he was asleep) and they rolled him out of the room and over to the OR.
Update 2: 8:55am, they've just made the first incision and will have an update in about an hour. Not to be too graphic, but they'll be sawing his sternum and then opening the sternum and ribs to see the heart.I'm not positive, but I believe this is the point they'll put him on the heart-lung machine, so the surgeon can stop his heart to work on it. I hope that with the next update they'll be able to tell me whether they're going to be able to move forward with The Ross Procedure, or if he'll have to have the mechanical valve. Please pray hard that he doesn't have to get that mechanical valve.
Update 3: 10:10am, Cain has just been placed on bypass. They do not know yet what procedure they're going to do. It may be another hour or hour and a half before they're able to make a decision.
Update 4: 11:10am, Thank God, they are doing The Ross Procedure!!!
Update 5: 12:30pm, Wow! They have already moved the pulmonary valve to the aortic valve position and are currently working on attaching the homograft to the pulmonary valve position. I am so happy!
Update 6: 3:00pm. Spoke with the surgeon. He was actually surprised that not only is Cain's aortic valve bi-cuspid, but his pulmonary valve is as well, which is quite unusual. He said that the procedure went as well as they could expect. He isn't sure that the valve will last 50 years, but its working now. They are transferring him to the Cardiac ICU and we will be able to see him in an hour.
Update 7: We were able to go in and see Cain. He is currently on a ventilator and has an external pacemaker. His ICU nurse was great and explained everything to us. He has two large drainage tubes coming out of the bottom of his chest. They cut through the original incision scar so there will be no additional scarring there, however with the drainage tubes they had to make two additional incisions to the five he already has. He has a central line in his neck area, an IV in both arms and an arterial (I think that's what they called it, I am entirely too tired to google right now) IV in his wrist area. And some kind of line in his stomach so they can give medicines and monitor something or another. He also has a tube through his nose for suctioning and he has a catheter. When I saw Cain he was asleep but was opening his eyes a bit and was able to understand what was being asked. When the nurse said, "Cain your parents are here" he started turning his head to look for us and attempted to talk, which he couldn't because of the ventilator. That's where I lost it, I just couldn't keep it together any longer. He was given morphine and fell right back to sleep.
When we first arrived we asked the cardiologist in the ICU what was going on with the bicuspid pulmonary valve that is now in the aortic position. I wanted to know what it meant that it only had two leafs instead of three. The cardiologist told us, "honestly, it is so rare for a ross to be done with a bicuspid pulmonary valve, that I don't have an answer for you. I'm not even sure there is literature on it, so I will work to find out if there is any information I can give you, but for now it's working". The arrhythmia's are still there, which we were told to expect, however his heartbeat is irregular and they needed the external pacemaker to pace the heartbeat. His blood pressure is stable and his glucose is a little high, but he was given insulin to bring it down. I asked the nurse if she could just tell me, based on what she knows about the ross procedure, was Cain doing as well as other kids. She said he was doing great and that they expected him to be removed from the ventilator sometime in the morning.
For now, the hospital was gracious enough to offer me a room to sleep in so I could be here throughout the night. The room is tiny but it has a bed and I am so very tired. The ICU nurse will be sure to call me if there are any changes while I sleep. It's been an incredibly long day and although things went fairly good, there are new worries with this valve that also has a defect. I will try to rest a bit and spend a good portion of my time researching this situation.
Thanks for following us today and praying for cain. I will update tomorrow as I have new information.
April 17, 2012
Update 8: I was able to see Cain last night around midnight (for the first time since 5:30). I'd kept calling after shift change, but the nurse told me Cain was very agitated. He was trying to get his breathing tube out with his tongue. His blood gas was too high (or too low, whichever is bad), and he was still retaining too much fluid. At midnight she called me to tell me they had taken the breathing tube out and I could come see him. I ran down there and he was awake. He smiled when he saw me and then started crying and said it hurts so bad every time I take a breath. The nurse went to get Morphine for him and I told Cain not to wait for me to say if he's in pain. That the nurse was there to help him and he needed to ask whenever he was uncomfortable. He said ok. Once the morphine kicked in he asked me if he could have his Edible Arrangement that his nanna told him he'd get, and he asked me where his quarters were for the vending machine, and he asked the nurse if he could walk to the teen room to play video games. Apparently he's hungry, but cannot yet eat. His nurse told him she'd have them bring a mobile video game cart to his bed in the morning. Cain wanted to hold hands with me and asked me to stay for a while. I stayed for a few hours until he was sleeping good and I got a few hours of sleep. It's now 7:30am and I've already been down to sign up to be present at morning rounds. I have questions about the valve that they used. Everything on the internet said you don't use a bicuspid pulmonary valve in the ross procedure. So, I'm uncertain why one of the best surgeons in the country did that. Obviously he has his reasons, but as of this moment I don't know why.
Update 9: I went to the doctors rounds, which was fine. I mean, it wouldn't have been a big deal to miss it. They said he was doing good, but continues to need the pacemaker for the time being. They are moving him out of the ICU and into a regular room in a few hours. I just used this opportunity to talk to Cain a little bit and give him a kiss before I got kicked out again. He's still in pain, which is to be expected, but he wasn't crying, just couldn't really move much and said it wasn't just his incision that hurt, he said his ribs hurt and generally his whole chest area. I didn't explain why, other than to tell him this was normal with open heart surgery. I will, hopefully, have a chance to talk to his surgeon tonight when he does rounds, as he was in surgery during this mornings rounds.
Update 10: At 10am my sister and I were able to go in and see Cain. I stopped to talk to the nurse while my sister went over to Cain. He told her he was in terrible pain. I went over and he was crying and moaning. He was having a hard time breathing due to the pain associated with it. He was very upset and couldn't calm himself down. The chest tube is quite large and is in between his lung and chest wall. The area gets irritated on both sides of the tube and it is painful. Even the Morphine was not helping. The nurse asked my sister to leave so they could get him more medicine and get him more comfortable. When she mentioned me leaving Cain grabbed my hand and his eyes got big. It is so hard to walk away from your child when you know they need and want you, and so hard at the same time to know that your staying there will not help in the littlest. I walked back to the waiting room while bawling my eyes out. This has been harder than I remember.
About 12 they moved him to a regular room in the Cardiac Unit. Cain was getting situated and was asking about food. We're not sure if he has a mosquito bite on his back or the morphine is making him itch, but he's constantly asking for me to scratch his back, which is difficult as he's laying on it. I do manage though, but shortly after arriving in the room while I was scratching his back, he said in a panicked voice, "mom, my armpit hurts, my armpit hurts, my armpit hurts" getting louder with each time it came out of his mouth until it turned into blood curdling screams. I ran and got the nurse and several nurses came in. He was demanding ice. I had to leave because I was thisclose to losing it with the head nurse who acted as if he was annoying her with his demand for ice. My sister stayed and my husband was just coming in. I stayed out for about 10 minutes and when I came back he was a bit more calm. The nurse practitioner told me that it was the pain from the chest tube that was radiating into his armpit and upper back area. They said it is very painful and their plan was just to give him pain medicine on schedule as opposed to waiting until he needed it. Every few minutes it would hurt again and he would cry in pain. It is incredibly hard to see him go through this and I would gladly take his place. No one should ever have see their kid like this.
April 18, 2012
Update 11: Last night Zouhair stayed the night at the hospital so I could go home with Zayd and get some rest. Through the night Cain had several episodes of extreme pain, but with repositioning and ice, he's been able to get through them. They removed his large white bandage from the incision and its now just covered with Steri-Strip's. The incision looks really good and I'm certain that when it heals the scar will look fairly close to what it looked like prior to surgery. Cain's white blood count is a bit low, for now they're monitoring it to see if it will come up on his own, if not, he'll need a blood transfusion. He's had probably 100+ blood transfusions in his life, so this is no problem. They are going to put him on a morphine pump shortly, so that he will be able to push the button to administer morphine to himself as he needs it. He was able to stand up for a bit just to step on the scale and get his weight. He said his feet hurt which is normal, but they're insistent that he get up today to walk a bit. He's pretty hesitant to do that, I think he's afraid it will hurt too much, but I know he will at the very least, try. He is really being so brave and I am so inspired at the way he is handling himself.
 |
| First time up since surgery |
Update 12: Updating has been hard. Today was another day with a lot of pain. Seeing Cain with pain so bad that he is scared to breathe or have anyone touch him is so hard. I feel so bad for him and so helpless when I know there is nothing I can do....or anyone can do for that matter. It is unfortunate, but the chest tubes hurt. They hurt adults, they hurt kids, but they're necessary. For the most part Cain says his incision is just sore, but it's the tubes that are making him scream out in agony. I am so thankful for my husband because when I don't know what to do other than cry for him, Zouhair is right there talking him through it and picking him up to reposition him. At one point this afternoon they finally hooked him up to a morphine pump which helped a good bit. We had to remind Cain several times to push the button, but its kept him comfortable since they attached it. Cain has been able to eat a bit, but mostly he just picks here and there. Cain was able to move over to a chair today where he sat for almost an hour before needing to go back to bed. He is making progress.
I spoke with the surgeon about his choice to use a bicuspid pulmonary valve when everything I read on the internet says you should abandon the ross procedure if you find the pulmonary valve to be bicuspid. He explained to me that he was born with that valve being bicuspid and after several hundred echo's no one knew it was bicuspid because it performed properly. He did a pre-op echo and and echo in the operating room and there was no indication it was bicuspid. When he opened Cain and saw the valve, he made the decision to go forward with using it because if it performed properly on the pulmonary side, he felt it would work properly on the aortic side. While he does admit it will probably not last as long as a valve that had 3 leaflets, it was still a better option than a mechanical valve. He estimates it could last 20 -25 years. Today he came in and said my questions prompted him to do some research last night and he said that in 1996 he did this same procedure, with a bicuspid pulmonary valve on a 5 year old girl. She just had a clinic visit in January and the valve is still working perfectly fine. That reassured me. I knew he had a good reason for doing it, I just needed to know what that reason was.
April 19, 2012
Update 13: Last night Cain was having some issues with his stomach hurting. I talked with Zouhair around 9 and Cain was in the background moaning. They gave him some medicine, but it didn't really work. Cain had some visitors yesterday and they had him up walking a bit, so he was exhausted. He did get some sleep last night though. This morning at around 6 they took him down for xrays. He was able to get out of bed and into a wheelchair for that. Around 10am he had to get on the scale for his weight 53.3 kilos (117.5 lbs). The physical therapist came in just after that and said she'd take him for a walk at around 11:45. My sister and I got Cain out of bed and into a chair so that he'd be ready for the walk. At 12:25 she was still not here so we asked the nurse to get her. When she came in it took all 3 off us about 15 minutes to get all of his cords untangled enough for him to walk. He stood up using the wheelchair as a walker and then walked about 4 feet one way and 4 feet back. We got him in bed and he was ready to sleep. That 8 foot walk had made him break a sweat and he was out of breath. He did really well, but it's physically and mentally exhausting for Cain to get up and do anything. Even scooting in the bed is basically impossible for him without the help of Zouhair or two nurses. He is weak and tired and drugged up and in pain.
Cain has two chest tubes that come down into a Y and drain into one machine that measures the drainage. Since the tubes are the main cause of pain, the doctor thought it'd be a good idea for each individual tube to be drained into its own receptacle, so if one wasn't draining, it could be removed. Three nurses came in to change the way the tubes drained. This doesn't hurt as they're not really doing anything at the incision site, but even being extremely careful there was some level of pressure that was being applied to the incision site with the tugging to reroute the drainage. Cain was in a good bit of pain, but he handled it well. As of now they said they're both still draining, but not a lot. The chest tubes may be able to get removed tomorrow....both of them. They said that usually once the chest tubes are removed kids bounce back right away. We'll see.
I took a CPR class (which was required). I took one 10 years ago but CPR changes so frequently, they want to be sure the parents know what they're doing. I needed the class anyway, I couldn't remember what to do from 10 years ago, and back then I learned on a baby dummy. Cains no longer a baby, so I learned on the adult dummy this time. CPR is really hard, physically....and emotionally. You just sit in that room praying that you never have a need for it. The girl sitting next to me had an 11 day old daughter, the woman across from me had a 3 week old daughter, and the woman next to her was the grandmother of a 2 week old baby. On the way back to the room after the class the grandmother asked me about Cain. I told her he had aortic stenosis, and was diagnosed at 2 weeks. She told me her granddaughter had aortic stenosis and they'd just done the balloon valvuoplasty and it was leaking really bad. I told her that's how cain started out and that if they were talking about replacing the valve, not to be too scared. Yes, it will be hard, but you can live a long life on that new little valve. I told her if she needed to talk she knew where to find me, and that if her daughter wanted to see how big that little baby could get on that valve, she was more than welcome to come meet Cain. The woman started crying and grabbed me and hugged me. She said that it was destiny that she met me because they're just so scared about this process.
Zouhair brought Zayd up to see Cain today. I thought Zayd might be scared to see Cain but he's not. Cain is kind of in a mood today, which is to be expected. I think he just wants us to be quiet so he can rest. The last two days have been hard for him to rest and I think if he could have anything in the world right now, it'd be some sleep. Unfortunately the hospital is really the last place in the world you get to sleep. Hopefully he'll be home in a few days and we'll be able to keep it quiet so he can rest.
April 20, 2012
Update 14: Yesterday mid-afternoon they turned the pacemaker off so they could watch how his heart performed without it. As expected, the arrhythmia's are still present, but hopefully in time Cain's heart will get used to the new valve working and the arrhythmia's will stop. They had the pacemaker set to start if there was an emergency, but luckily it never needed to start working. First thing this morning the surgeon came in and said that Cain's tubes had stopped draining and they could come out. Around noon they came in to explain to Cain what was going to happen. They would cut the stitches that were holding in both the drainage tubes and the pacemaker wires. The doctor would apply pressure to his stomach where the tubes entered the skin and they would quickly pull them out, then tie the remaining stitches to close the hole. They gave Cain a large dose of both morphine and versed. He was very anxious about the procedure although they explained there would be some pressure and a bit of a pinching feeling. Although the procedure went quickly, it was very traumatic. Cain's nerves got the best of him and he was hyperventilating and very upset. No matter how many times you tell him to look at you and not what they're doing, he likes to watch. I understand wanting to know what's going on with you, but at the same time seeing it often makes it worse. There was a good amount of blood and it was very scary for him. Once the tubes were out, it took about 25 minutes for him to finally calm down. He held onto my hand the entire time - from just before the removal to the 25 minutes afterward. It made me feel good that he wanted to hold my hand, I felt for the first time that I actually may be comforting him. The doctor and the nurses have repeatedly told me "once the tubes come out he'll be a completely different person". Although I trust them, I highly doubted that Cain would go from miserable to "fine". After the tubes were out he had to have an echo and his vitals taken every 15 minutes for the first hour, every 30 minutes for the second hour, and then once an hour after that. He also had to have a chest x-ray. All of the tests looked really good, and at 6:00pm today, Cain was released from the hospital! As I mentioned, I was not convinced that Cain would be ready to go home. I found it hard to believe that he'd be ready to, when just 7 hours earlier he was miserable, however, I am here to report that Cain is doing GREAT! Not only did Cain go home today, he opted to walk out of the hospital instead of being wheeled out. He walked from his room all the way to the front of the hospital where Zouhair was waiting to pick him up. We are now home with a few prescriptions (very few, in fact), and Cain is laying in his bed watching TV. At 8:30 he was able to have his pain medicine, but he told me that he didn't need it and would like to wait until later. I am blown away at the strength that this 10 year old has. Just 5 days ago he was in surgery and in the ICU on a ventilator, and today he's walking and turning down pain medication. I am incredibly inspired by this young man, and I'm certain that no matter how many times I tell him just how proud of him that I am, he will never be able to fully grasp just how much I mean it.
April 21, 2012
Update 15: Cain's first night at home was ok. At around 9:30 he asked for his pain medicine. He fell asleep around 11:00, but was up about every 45 minutes. At 3:15am he asked for more pain medicine. He got up for the day around 7:00am and although he didn't sleep much last night, he's stayed up all day. He's done a good amount of walking today, mostly from bed to the bathroom as he's on lasix, a water pill used to release unneeded fluid/water from the body.
Upon leaving the hospital, the physical therapist suggested that we set up a bed in our living room as all of our bedrooms are upstairs and she felt as if Cain should wait a few days before attempting to go up the stairs. Our lower level has a bathroom, but not a shower, and since Cain has not had a proper shower since last Sunday, and the incision needs to be washed everyday, I asked him if he thought he'd be able to make it upstairs. He said he'd try. It took us a while, but he made it upstairs. He needed to sit down once we got there, as he was out of breath, so he took a break while I got things ready.
He was able to shower and I changed the bandages on the chest tube incisions. They look really good and seem to be healing well. There is very little fluid draining from them and with the bandage changing we were able to get the sticky tape patches off that were left all over his chest, stomach, and sides. After a bit of a rest upstairs we slowly made it back downstairs where Cain was able to lay in bed and rest. He said he felt so much better after the shower and felt like he'd be able to sleep good tonight. He's not needed his pain pills every 4 hours, but about every 5 to 6 hours he's asking for them. He's doing incredibly well and is trying to do more for himself than I feel comfortable with. He says its because he feels bad that I'm doing so much for him and have to get up every 2 seconds. I keep reassuring him that I want to help him so he can recover and this is what any mom would do and to never feel bad about it. He's such a sweet kid.
April 24, 2012
Update 16: Yesterday (Monday) was my first day back at work. Zouhair was home with the kids and everything was fine. Cain had been getting around over the weekend pretty well. He was able to make it upstairs for showering again. While changing the bandages over the tube incisions we could see that they were barely draining and healing well. He was eating ok and taking the pain medicine less often. I continued to sleep downstairs with Cain and each night he was waking up every few hours with stomach and/or chest pain. It was a long weekend.
Around 1:30 yesterday Zouhair called me at work to tell me Cain had some type of a rash on his chest, neck, and stomach. He said they looked like little goosebumps, but were red and very itchy. Cain was miserable. I called the surgeons office and the nurse practitioner told me it may be a reaction to the tape, although I had removed the sticky leftovers from the iv's and heart monitor/EKG/Echo stickers on Saturday. She advised me to give him a dose of benadryl and that this should stop the itching. I arrived home around 5 and gave him the Benadryl. At 7:30 he asked if he could have more as he was just really itchy still. Obviously he couldn't have it that soon, so I took him to the kitchen to inspect the rash again. By this time it had turned into hives...big puffy patches of raised red bumps. I also noticed that at the top of his sternum, the large lump (it looks like a ping pong ball under his skin and is normal after open heart surgery) had turned red and was hot to the touch. He laid on the bed and I saw his nostrils begin to flare out when he was breathing. I got nervous and at 9:00 I called the heart center and they told me they'd page the on-call Dr. 58 minutes later I'd still not received a call back and when I tried calling again the answering service kept me on hold for 20 minutes. I just decided at that point to take him to the local hospital.
The hospital closest to me is about 3 miles away. Although they don't specialize in pediatrics or heart surgery for that matter, I was unconcerned about the function of his heart and more concerned with the reaction his skin was having and the possible infection at the incision. I figured they could handle this, however, when we got there the nurse advised us "he needs to be seen, but not here, they will take better care of him somewhere else". I was surprised, but then decided to drive to the children's hospital 45 minutes away....until we got on the interstate and Cain began to have trouble breathing and seemed to be losing consciousness in the car. I immediately took him to the closest hospital, which was the hospital he was born at. I signed him in and they took him right back. They got him on monitors, put in an IV, took chest x-rays, ran blood and urine tests and then the doctor told me she was nervous with his heart rate, blood pressure, and the arrhythmia's. I told her his numbers looked "normal" for him. She said the rash didn't look like a normal allergic reaction and she'd contacted the surgeon. He told her to have Cain transported to the children's hospital. Forty minutes later the Children's ambulance arrived and took Cain to be readmitted.
I followed behind and we arrived around 3am. Cain was given Benadryl and had more blood drawn and had an EKG. The doctor came in and told me everything looked normal, even the bulge in the sternum. Twenty minutes later the nurse asked me if the doctor talked to me about everything. I said yes, he told me everything was fine. She said, so did he tell you they may have to reopen the incision in the morning to inspect and clean it. I said, nooooo, he said everything looked normal. She told me that is not normal and it was concerning. They'd be running more tests. Person after person came in doing test after test. In the morning the surgeons assistant came in to remove the steri-strips over the incision and she couldn't believe that the skin was raised and red in the perfect shape of every strip of tape. He was apparently having a bad reaction to all types of adhesive. He's never had a reaction before, even when he had the heart cath a few weeks ago. The surgeon came in a few minutes later and said that although the lump on his sternum did look concerning, none of the bloodwork showed any sign of infection. He said the swelling is very normal and likely, the redness was just from the tape. He told me Cain could go home. Keep taking Benadryl and put on a topical cortisone cream. Around 2pm Cain was released and we headed home.
Upon returning home both Cain and I slept for several hours. Both he and I have not slept more than 2 to 3 hours a day for almost a week. He has been through so much this week, and I really could not be more happy with his progress. Obviously, the rash was something we'd rather not happen, but it is something that is manageable. I am owning that there will be no more problems from here on out. We have a checkup with the Cardiologist next week and we're anticipating that to go great!
I spoke with the surgeon about his choice to use a bicuspid pulmonary valve when everything I read on the internet says you should abandon the ross procedure if you find the pulmonary valve to be bicuspid. He explained to me that he was born with that valve being bicuspid and after several hundred echo's no one knew it was bicuspid because it performed properly. He did a pre-op echo and and echo in the operating room and there was no indication it was bicuspid. When he opened Cain and saw the valve, he made the decision to go forward with using it because if it performed properly on the pulmonary side, he felt it would work properly on the aortic side. While he does admit it will probably not last as long as a valve that had 3 leaflets, it was still a better option than a mechanical valve. He estimates it could last 20 -25 years. Today he came in and said my questions prompted him to do some research last night and he said that in 1996 he did this same procedure, with a bicuspid pulmonary valve on a 5 year old girl. She just had a clinic visit in January and the valve is still working perfectly fine. That reassured me. I knew he had a good reason for doing it, I just needed to know what that reason was.
April 19, 2012
Update 13: Last night Cain was having some issues with his stomach hurting. I talked with Zouhair around 9 and Cain was in the background moaning. They gave him some medicine, but it didn't really work. Cain had some visitors yesterday and they had him up walking a bit, so he was exhausted. He did get some sleep last night though. This morning at around 6 they took him down for xrays. He was able to get out of bed and into a wheelchair for that. Around 10am he had to get on the scale for his weight 53.3 kilos (117.5 lbs). The physical therapist came in just after that and said she'd take him for a walk at around 11:45. My sister and I got Cain out of bed and into a chair so that he'd be ready for the walk. At 12:25 she was still not here so we asked the nurse to get her. When she came in it took all 3 off us about 15 minutes to get all of his cords untangled enough for him to walk. He stood up using the wheelchair as a walker and then walked about 4 feet one way and 4 feet back. We got him in bed and he was ready to sleep. That 8 foot walk had made him break a sweat and he was out of breath. He did really well, but it's physically and mentally exhausting for Cain to get up and do anything. Even scooting in the bed is basically impossible for him without the help of Zouhair or two nurses. He is weak and tired and drugged up and in pain.
Cain has two chest tubes that come down into a Y and drain into one machine that measures the drainage. Since the tubes are the main cause of pain, the doctor thought it'd be a good idea for each individual tube to be drained into its own receptacle, so if one wasn't draining, it could be removed. Three nurses came in to change the way the tubes drained. This doesn't hurt as they're not really doing anything at the incision site, but even being extremely careful there was some level of pressure that was being applied to the incision site with the tugging to reroute the drainage. Cain was in a good bit of pain, but he handled it well. As of now they said they're both still draining, but not a lot. The chest tubes may be able to get removed tomorrow....both of them. They said that usually once the chest tubes are removed kids bounce back right away. We'll see.
I took a CPR class (which was required). I took one 10 years ago but CPR changes so frequently, they want to be sure the parents know what they're doing. I needed the class anyway, I couldn't remember what to do from 10 years ago, and back then I learned on a baby dummy. Cains no longer a baby, so I learned on the adult dummy this time. CPR is really hard, physically....and emotionally. You just sit in that room praying that you never have a need for it. The girl sitting next to me had an 11 day old daughter, the woman across from me had a 3 week old daughter, and the woman next to her was the grandmother of a 2 week old baby. On the way back to the room after the class the grandmother asked me about Cain. I told her he had aortic stenosis, and was diagnosed at 2 weeks. She told me her granddaughter had aortic stenosis and they'd just done the balloon valvuoplasty and it was leaking really bad. I told her that's how cain started out and that if they were talking about replacing the valve, not to be too scared. Yes, it will be hard, but you can live a long life on that new little valve. I told her if she needed to talk she knew where to find me, and that if her daughter wanted to see how big that little baby could get on that valve, she was more than welcome to come meet Cain. The woman started crying and grabbed me and hugged me. She said that it was destiny that she met me because they're just so scared about this process.
Zouhair brought Zayd up to see Cain today. I thought Zayd might be scared to see Cain but he's not. Cain is kind of in a mood today, which is to be expected. I think he just wants us to be quiet so he can rest. The last two days have been hard for him to rest and I think if he could have anything in the world right now, it'd be some sleep. Unfortunately the hospital is really the last place in the world you get to sleep. Hopefully he'll be home in a few days and we'll be able to keep it quiet so he can rest.
April 20, 2012
Update 14: Yesterday mid-afternoon they turned the pacemaker off so they could watch how his heart performed without it. As expected, the arrhythmia's are still present, but hopefully in time Cain's heart will get used to the new valve working and the arrhythmia's will stop. They had the pacemaker set to start if there was an emergency, but luckily it never needed to start working. First thing this morning the surgeon came in and said that Cain's tubes had stopped draining and they could come out. Around noon they came in to explain to Cain what was going to happen. They would cut the stitches that were holding in both the drainage tubes and the pacemaker wires. The doctor would apply pressure to his stomach where the tubes entered the skin and they would quickly pull them out, then tie the remaining stitches to close the hole. They gave Cain a large dose of both morphine and versed. He was very anxious about the procedure although they explained there would be some pressure and a bit of a pinching feeling. Although the procedure went quickly, it was very traumatic. Cain's nerves got the best of him and he was hyperventilating and very upset. No matter how many times you tell him to look at you and not what they're doing, he likes to watch. I understand wanting to know what's going on with you, but at the same time seeing it often makes it worse. There was a good amount of blood and it was very scary for him. Once the tubes were out, it took about 25 minutes for him to finally calm down. He held onto my hand the entire time - from just before the removal to the 25 minutes afterward. It made me feel good that he wanted to hold my hand, I felt for the first time that I actually may be comforting him. The doctor and the nurses have repeatedly told me "once the tubes come out he'll be a completely different person". Although I trust them, I highly doubted that Cain would go from miserable to "fine". After the tubes were out he had to have an echo and his vitals taken every 15 minutes for the first hour, every 30 minutes for the second hour, and then once an hour after that. He also had to have a chest x-ray. All of the tests looked really good, and at 6:00pm today, Cain was released from the hospital! As I mentioned, I was not convinced that Cain would be ready to go home. I found it hard to believe that he'd be ready to, when just 7 hours earlier he was miserable, however, I am here to report that Cain is doing GREAT! Not only did Cain go home today, he opted to walk out of the hospital instead of being wheeled out. He walked from his room all the way to the front of the hospital where Zouhair was waiting to pick him up. We are now home with a few prescriptions (very few, in fact), and Cain is laying in his bed watching TV. At 8:30 he was able to have his pain medicine, but he told me that he didn't need it and would like to wait until later. I am blown away at the strength that this 10 year old has. Just 5 days ago he was in surgery and in the ICU on a ventilator, and today he's walking and turning down pain medication. I am incredibly inspired by this young man, and I'm certain that no matter how many times I tell him just how proud of him that I am, he will never be able to fully grasp just how much I mean it.
April 21, 2012
Update 15: Cain's first night at home was ok. At around 9:30 he asked for his pain medicine. He fell asleep around 11:00, but was up about every 45 minutes. At 3:15am he asked for more pain medicine. He got up for the day around 7:00am and although he didn't sleep much last night, he's stayed up all day. He's done a good amount of walking today, mostly from bed to the bathroom as he's on lasix, a water pill used to release unneeded fluid/water from the body.
Upon leaving the hospital, the physical therapist suggested that we set up a bed in our living room as all of our bedrooms are upstairs and she felt as if Cain should wait a few days before attempting to go up the stairs. Our lower level has a bathroom, but not a shower, and since Cain has not had a proper shower since last Sunday, and the incision needs to be washed everyday, I asked him if he thought he'd be able to make it upstairs. He said he'd try. It took us a while, but he made it upstairs. He needed to sit down once we got there, as he was out of breath, so he took a break while I got things ready.
He was able to shower and I changed the bandages on the chest tube incisions. They look really good and seem to be healing well. There is very little fluid draining from them and with the bandage changing we were able to get the sticky tape patches off that were left all over his chest, stomach, and sides. After a bit of a rest upstairs we slowly made it back downstairs where Cain was able to lay in bed and rest. He said he felt so much better after the shower and felt like he'd be able to sleep good tonight. He's not needed his pain pills every 4 hours, but about every 5 to 6 hours he's asking for them. He's doing incredibly well and is trying to do more for himself than I feel comfortable with. He says its because he feels bad that I'm doing so much for him and have to get up every 2 seconds. I keep reassuring him that I want to help him so he can recover and this is what any mom would do and to never feel bad about it. He's such a sweet kid.
April 24, 2012
Update 16: Yesterday (Monday) was my first day back at work. Zouhair was home with the kids and everything was fine. Cain had been getting around over the weekend pretty well. He was able to make it upstairs for showering again. While changing the bandages over the tube incisions we could see that they were barely draining and healing well. He was eating ok and taking the pain medicine less often. I continued to sleep downstairs with Cain and each night he was waking up every few hours with stomach and/or chest pain. It was a long weekend.
Around 1:30 yesterday Zouhair called me at work to tell me Cain had some type of a rash on his chest, neck, and stomach. He said they looked like little goosebumps, but were red and very itchy. Cain was miserable. I called the surgeons office and the nurse practitioner told me it may be a reaction to the tape, although I had removed the sticky leftovers from the iv's and heart monitor/EKG/Echo stickers on Saturday. She advised me to give him a dose of benadryl and that this should stop the itching. I arrived home around 5 and gave him the Benadryl. At 7:30 he asked if he could have more as he was just really itchy still. Obviously he couldn't have it that soon, so I took him to the kitchen to inspect the rash again. By this time it had turned into hives...big puffy patches of raised red bumps. I also noticed that at the top of his sternum, the large lump (it looks like a ping pong ball under his skin and is normal after open heart surgery) had turned red and was hot to the touch. He laid on the bed and I saw his nostrils begin to flare out when he was breathing. I got nervous and at 9:00 I called the heart center and they told me they'd page the on-call Dr. 58 minutes later I'd still not received a call back and when I tried calling again the answering service kept me on hold for 20 minutes. I just decided at that point to take him to the local hospital.
The hospital closest to me is about 3 miles away. Although they don't specialize in pediatrics or heart surgery for that matter, I was unconcerned about the function of his heart and more concerned with the reaction his skin was having and the possible infection at the incision. I figured they could handle this, however, when we got there the nurse advised us "he needs to be seen, but not here, they will take better care of him somewhere else". I was surprised, but then decided to drive to the children's hospital 45 minutes away....until we got on the interstate and Cain began to have trouble breathing and seemed to be losing consciousness in the car. I immediately took him to the closest hospital, which was the hospital he was born at. I signed him in and they took him right back. They got him on monitors, put in an IV, took chest x-rays, ran blood and urine tests and then the doctor told me she was nervous with his heart rate, blood pressure, and the arrhythmia's. I told her his numbers looked "normal" for him. She said the rash didn't look like a normal allergic reaction and she'd contacted the surgeon. He told her to have Cain transported to the children's hospital. Forty minutes later the Children's ambulance arrived and took Cain to be readmitted.
I followed behind and we arrived around 3am. Cain was given Benadryl and had more blood drawn and had an EKG. The doctor came in and told me everything looked normal, even the bulge in the sternum. Twenty minutes later the nurse asked me if the doctor talked to me about everything. I said yes, he told me everything was fine. She said, so did he tell you they may have to reopen the incision in the morning to inspect and clean it. I said, nooooo, he said everything looked normal. She told me that is not normal and it was concerning. They'd be running more tests. Person after person came in doing test after test. In the morning the surgeons assistant came in to remove the steri-strips over the incision and she couldn't believe that the skin was raised and red in the perfect shape of every strip of tape. He was apparently having a bad reaction to all types of adhesive. He's never had a reaction before, even when he had the heart cath a few weeks ago. The surgeon came in a few minutes later and said that although the lump on his sternum did look concerning, none of the bloodwork showed any sign of infection. He said the swelling is very normal and likely, the redness was just from the tape. He told me Cain could go home. Keep taking Benadryl and put on a topical cortisone cream. Around 2pm Cain was released and we headed home.
Upon returning home both Cain and I slept for several hours. Both he and I have not slept more than 2 to 3 hours a day for almost a week. He has been through so much this week, and I really could not be more happy with his progress. Obviously, the rash was something we'd rather not happen, but it is something that is manageable. I am owning that there will be no more problems from here on out. We have a checkup with the Cardiologist next week and we're anticipating that to go great!
Saturday, April 14, 2012
Pre-Op
Yesterday, Friday the 13th, was pre-op day. I wasn't sure exactly what was going to happen other than bloodwork. Upon arrival they told us we'd be there all day. Just how long is all day, we asked. The nurse said, "ALL DAY".
We began by Cain getting weighed and measured. Then we were sent off with a folder and directions on how to find all of the places we needed to go. First was bloodwork where they took 4 vials of blood. Cain has not had blood drawn since he was a baby. He did good, but told me that it hurt. "I know it hurts baby, but its a necessity. It will be over in just a second. You're doing great Cain". I rubbed his back as she finished up and we headed over to X-ray. They took a few pics and we went back to the pre-op clinic.
We met a lot of people who had a lot of information for us. The anesthesiologist came in to explain to us just how he'd get Cain to sleep. The nurse practitioner came in to ask a million questions, to answer a few questions and to give Cain a physical. The surgeons nurse came in to talk to us a bit about the procedure and then the surgeon came in to talk to us about the surgery and his plan. He let us know that due to Cain having two prior surgeries, there may be a lot of scar tissue which may make it impossible for him to do the procedure that everyone feels is best for Cain. The Ross Procedure.
The Ross Procedure, in summary, is when they take the pulmonary valve and put it in the aortic valve's position and they put a homograft (a human donor valve) in the pulmonary valve position. Cain's current aortic valve is a homograft and due to this, he is not a candidate to receive another homograft in the aortic valve position. In the event there is too much scar tissue to perform The Ross Procedure, we have to decide what alternative to choose. There are positives and negatives to each option and we have a very short time to decide. The surgeon said he couldn't really medically make that decision for us, as they're both good options, but depend more on how we feel they'd work out for Cain in the long run. Lifelong medicine or re-operation in 10 years. We are praying that he is able to proceed with the initial plan and we wont have to make that decision on the backup plan.
After the surgeon left it was off to get an echo-cardiogram, which is essentially an ultrasound of the heart. These are a little uncomfortable for Cain because they do tend to press a bit hard and have to take images from different views....from just above his collarbone, below is ribcage and then of course, on his chest. They generally take about 20 - 30 minutes. Cain did well with this too and when this was done it was back to the pre-op clinic.
The ICU Cardiologist came in to talk to us about a study that they're doing regarding glucose levels after cardiac surgery and asked if Cain could be part of the study. There was absolutely no possible adverse effects to him being a part of it, and the thought that this information may be able to help Cain in the future made his participation a no-brainer. We signed those forms and then a Child Life Specialist came in to talk to Cain specifically about what was going to happen.
She brought a binder with pictures of the OR and the ICU. She also had pictures of the machines and explained what they do. She had a mask with her to show Cain what it looked like and she had a diagram of the heart so she could point out exactly where the valves were that everyone kept talking about. There was also a doll that had bandages on his chest and IV's in his arms and a drainage tube so Cain could know what his chest will look like when he wakes up. I think this really helped Cain to feel like he had a grasp of what was going on.
The final part of our day was when we had to sign the surgery consent forms. This required the speech of all of the risks that could, but likely won't happen. The list is one I don't want to go over here. Or anywhere. Or even fathom that can happen. Obviously we all know there is risk in surgery. Lets just leave it at that. I signed the forms, we got the instructions on when to arrive, how to wash Cain before arriving, what kind of things to bring, and we were released.
Seven hours of constant reminder over and over of what, in detail, is going to happen before, during, and after surgery, is rough. Communication is great. Keeping us informed is wonderful. But that thought running through the back of your mind that this is REALLY happening, is hard. I spent the majority of my day with a lump in my throat and when I went downstairs to get coffee, I cried in the elevator. He's 10, but he's my baby and I know I have to be strong, but this is difficult. I have supportive friends and family and I appreciate that so much. I have this son who is so strong, he's not even worried about the surgery. Yet sometimes I still feel that lump and the tears coming. I know what is coming, but a part of me feels like knowing is even worse than being surprised.
We began by Cain getting weighed and measured. Then we were sent off with a folder and directions on how to find all of the places we needed to go. First was bloodwork where they took 4 vials of blood. Cain has not had blood drawn since he was a baby. He did good, but told me that it hurt. "I know it hurts baby, but its a necessity. It will be over in just a second. You're doing great Cain". I rubbed his back as she finished up and we headed over to X-ray. They took a few pics and we went back to the pre-op clinic.
We met a lot of people who had a lot of information for us. The anesthesiologist came in to explain to us just how he'd get Cain to sleep. The nurse practitioner came in to ask a million questions, to answer a few questions and to give Cain a physical. The surgeons nurse came in to talk to us a bit about the procedure and then the surgeon came in to talk to us about the surgery and his plan. He let us know that due to Cain having two prior surgeries, there may be a lot of scar tissue which may make it impossible for him to do the procedure that everyone feels is best for Cain. The Ross Procedure.
The Ross Procedure, in summary, is when they take the pulmonary valve and put it in the aortic valve's position and they put a homograft (a human donor valve) in the pulmonary valve position. Cain's current aortic valve is a homograft and due to this, he is not a candidate to receive another homograft in the aortic valve position. In the event there is too much scar tissue to perform The Ross Procedure, we have to decide what alternative to choose. There are positives and negatives to each option and we have a very short time to decide. The surgeon said he couldn't really medically make that decision for us, as they're both good options, but depend more on how we feel they'd work out for Cain in the long run. Lifelong medicine or re-operation in 10 years. We are praying that he is able to proceed with the initial plan and we wont have to make that decision on the backup plan.
After the surgeon left it was off to get an echo-cardiogram, which is essentially an ultrasound of the heart. These are a little uncomfortable for Cain because they do tend to press a bit hard and have to take images from different views....from just above his collarbone, below is ribcage and then of course, on his chest. They generally take about 20 - 30 minutes. Cain did well with this too and when this was done it was back to the pre-op clinic.
The ICU Cardiologist came in to talk to us about a study that they're doing regarding glucose levels after cardiac surgery and asked if Cain could be part of the study. There was absolutely no possible adverse effects to him being a part of it, and the thought that this information may be able to help Cain in the future made his participation a no-brainer. We signed those forms and then a Child Life Specialist came in to talk to Cain specifically about what was going to happen.
She brought a binder with pictures of the OR and the ICU. She also had pictures of the machines and explained what they do. She had a mask with her to show Cain what it looked like and she had a diagram of the heart so she could point out exactly where the valves were that everyone kept talking about. There was also a doll that had bandages on his chest and IV's in his arms and a drainage tube so Cain could know what his chest will look like when he wakes up. I think this really helped Cain to feel like he had a grasp of what was going on.
The final part of our day was when we had to sign the surgery consent forms. This required the speech of all of the risks that could, but likely won't happen. The list is one I don't want to go over here. Or anywhere. Or even fathom that can happen. Obviously we all know there is risk in surgery. Lets just leave it at that. I signed the forms, we got the instructions on when to arrive, how to wash Cain before arriving, what kind of things to bring, and we were released.
Seven hours of constant reminder over and over of what, in detail, is going to happen before, during, and after surgery, is rough. Communication is great. Keeping us informed is wonderful. But that thought running through the back of your mind that this is REALLY happening, is hard. I spent the majority of my day with a lump in my throat and when I went downstairs to get coffee, I cried in the elevator. He's 10, but he's my baby and I know I have to be strong, but this is difficult. I have supportive friends and family and I appreciate that so much. I have this son who is so strong, he's not even worried about the surgery. Yet sometimes I still feel that lump and the tears coming. I know what is coming, but a part of me feels like knowing is even worse than being surprised.
Sunday, April 8, 2012
The Day I've Dreaded For 10 Years.....
Ten and a half years ago on November 24, 2001, I was blessed with a beautiful and healthy baby, Cain. For two weeks I had what I assume is a very normal newborn. Sleepy and cuddly and cute. Two weeks after his birth my world was turned upside down when at his two week well check the doctor heard a heart murmur. She assured me many kids have murmur's so I shouldn't worry, but she wanted a cardiologist to check it out, just in case. She said she'd get me the info and be back in a moment. She came back and handed me the card with the name, address, and phone number of a pediatric cardiologist. I told her I would call and make an appointment when I got home. She said, no, I've already called and they're expecting you now. Right then my heart dropped. I knew it wasn't as unconcerning as she led me to believe. Even at 20, I knew you didn't get an immediate appointment with a pediatric cardiologist if it was "likely something he'll grow out of". I drove the the office in Atlanta and that is the day I was told that he was born with a congenital heart defect: Severe Aortic Stenosis.
I remember that day as clear as if it were yesterday. He came in and explained what was going on with his Aortic Valve and let me know that he would schedule Cain for a balloon valvuloplasty, where they would put a balloon into his aortic valve and blow it up in an attempt to stretch it out. This was an outpatient procedure and would hopefully solve the problem. A few days later he had the procedure and all seemed to go fine. We were discharged thinking there would be no other problems. One hour at home and Cain got a high fever. We were told to come to the ER and from there Cain was admitted. A few days later Cain got an aortic aneurysm and was taken in for emergency open heart surgery to repair the aneurysm. The surgery went well but Cain developed an infection in his blood and endocarditis, which is infection of the inside lining of the heart chambers and heart valves (endocardium) along with pericarditis, which is an infection of the protective lining that surrounds the heart (pericardium). Then his lung collapsed....
Two weeks after the first surgery, he got another aortic aneurysm. He was taken in for emergency open heart surgery to replace the aortic valve. The doctor told me if we didn't do the surgery immediately he would die. If he did the surgery he would likely die due to the infection in his heart. Infected tissue will not hold a stitch and without stitches, he would bleed to death. But he had to try. I was completely heartbroken at the thought of losing Cain, but after research about the surgeon, I knew that if anyone could save his life, it was him. I handed my baby over and 8 hours later I got the call that the surgery went good but to prepare myself to see him as he was bloated to twice the size he was normally and they were unable to close his chest. His skin was covered in a rash from the blend of medicines he'd been on and he was intubated and had wires and tubes coming from everywhere. I wanted to go see him but I was scared to go see him as well. I remember having to talk myself into it. It was terribly hard to see him like that. Tubes coming from everywhere. A cut down his chest, 5 drainage tubes under the incision across his belly, iv's, breathing tubes. I don't have a great memory, but that moment, walking through the double doors and seeing him for the first time after the surgery is ingrained in my memory forever.
The following months were hard and we dealt with his central line coming out and him losing most of his blood, a bout of RSV which required him to be in isolation in the hospital for a couple of weeks. Medicine and more medicine. Doctors visits and more doctors visits. But regardless of the medical needs Cain had, he was a joy. He was a happy baby that went through so much, yet thrived. He sat up early on his own, he ate so much food and he was just so smart. When he turned one year old I remember feeling for the first time like it was going to be ok. The rough part was over.
For the next 9 years Cain lived as normal of a life as possible. His doctor allowed him to play some sports, he played with his friends as normal and he excelled in school. After he was 3, our biannual visits to the cardiologist turned into annual visits, as he was doing so well. In the back of my mind I knew there was an impending surgery. I knew one day it would come, but even considering that I was expecting it someday, didn't prepare me for the day we were told "it's time".
So, here it is, "time" and I have a lot of emotions. Happy that this surgery will fix the problem for many years, if not forever. Scared about such a big surgery. Heartbroken for Cain that he is going to miss out on some things that are important to him at the moment. And most of all confused because although we've been through all of this before, I've not been through this with a young man or dealt with the emotions of a 10 year old that's been told they have to have this huge thing happen right away. Cain obviously doesn't remember all he has been through and so although we've been down this road before, the scenery seems so different now.
Even while there is uncertainty, I am confident in a few things.... I know Cains heart will be operated on by one of the best pediatric cardiothoracic surgeons in the country and I know I have an amazingly strong son that will also come through this surgery and thrive. He will have a long, happy, healthy, and beautiful life, and for that I am so very thankful.
I remember that day as clear as if it were yesterday. He came in and explained what was going on with his Aortic Valve and let me know that he would schedule Cain for a balloon valvuloplasty, where they would put a balloon into his aortic valve and blow it up in an attempt to stretch it out. This was an outpatient procedure and would hopefully solve the problem. A few days later he had the procedure and all seemed to go fine. We were discharged thinking there would be no other problems. One hour at home and Cain got a high fever. We were told to come to the ER and from there Cain was admitted. A few days later Cain got an aortic aneurysm and was taken in for emergency open heart surgery to repair the aneurysm. The surgery went well but Cain developed an infection in his blood and endocarditis, which is infection of the inside lining of the heart chambers and heart valves (endocardium) along with pericarditis, which is an infection of the protective lining that surrounds the heart (pericardium). Then his lung collapsed....
Two weeks after the first surgery, he got another aortic aneurysm. He was taken in for emergency open heart surgery to replace the aortic valve. The doctor told me if we didn't do the surgery immediately he would die. If he did the surgery he would likely die due to the infection in his heart. Infected tissue will not hold a stitch and without stitches, he would bleed to death. But he had to try. I was completely heartbroken at the thought of losing Cain, but after research about the surgeon, I knew that if anyone could save his life, it was him. I handed my baby over and 8 hours later I got the call that the surgery went good but to prepare myself to see him as he was bloated to twice the size he was normally and they were unable to close his chest. His skin was covered in a rash from the blend of medicines he'd been on and he was intubated and had wires and tubes coming from everywhere. I wanted to go see him but I was scared to go see him as well. I remember having to talk myself into it. It was terribly hard to see him like that. Tubes coming from everywhere. A cut down his chest, 5 drainage tubes under the incision across his belly, iv's, breathing tubes. I don't have a great memory, but that moment, walking through the double doors and seeing him for the first time after the surgery is ingrained in my memory forever.
The following months were hard and we dealt with his central line coming out and him losing most of his blood, a bout of RSV which required him to be in isolation in the hospital for a couple of weeks. Medicine and more medicine. Doctors visits and more doctors visits. But regardless of the medical needs Cain had, he was a joy. He was a happy baby that went through so much, yet thrived. He sat up early on his own, he ate so much food and he was just so smart. When he turned one year old I remember feeling for the first time like it was going to be ok. The rough part was over.
For the next 9 years Cain lived as normal of a life as possible. His doctor allowed him to play some sports, he played with his friends as normal and he excelled in school. After he was 3, our biannual visits to the cardiologist turned into annual visits, as he was doing so well. In the back of my mind I knew there was an impending surgery. I knew one day it would come, but even considering that I was expecting it someday, didn't prepare me for the day we were told "it's time".
So, here it is, "time" and I have a lot of emotions. Happy that this surgery will fix the problem for many years, if not forever. Scared about such a big surgery. Heartbroken for Cain that he is going to miss out on some things that are important to him at the moment. And most of all confused because although we've been through all of this before, I've not been through this with a young man or dealt with the emotions of a 10 year old that's been told they have to have this huge thing happen right away. Cain obviously doesn't remember all he has been through and so although we've been down this road before, the scenery seems so different now.
Even while there is uncertainty, I am confident in a few things.... I know Cains heart will be operated on by one of the best pediatric cardiothoracic surgeons in the country and I know I have an amazingly strong son that will also come through this surgery and thrive. He will have a long, happy, healthy, and beautiful life, and for that I am so very thankful.
Thursday, March 22, 2012
An Unbelievable Coincidence
As many of you know, my husband is from Morocco. I moved there a few years back so that we could be together before moving to the US together. I remember on my first visit to Morocco I was so captivated by....everything. The buildings, the billboards, the radio stations, the food, the people. Everything was new and exciting and beautiful and I remember having my camera on me at all times. I would take pictures of everything, but especially the people. I was in awe of everything about them. I would take pictures of women who tied their babies on their backs with pieces of cloth. Women who would carry things on their heads. Old people with their makeshift hand pedal wheelchairs.
Over the past few years I've made a few girlfriends that were also Americans married to Moroccans. We're scattered all over the world, but we are in a private group on Facebook. There are just a few of us and we have become very good friends. We share everything from funny stories about our day, to our medical problems, to issues with the world - and everything in between. Often times we will randomly post pictures of our travels to Morocco.
Today the admin of the group changed our cover photo to a really pretty picture of a woman standing on the side of the road she had taken while visiting Morocco. The woman was in a blue dress and was wearing a blue head scarf. She was standing in front of a white building with a blue/green door and the sky was in the background. It was a beautiful picture, but there was something familiar about the woman. I stared at the picture for a few minutes in disbelief before finally asking her where she took it. She said she took it in the town I used to live in in Morocco. I could not believe it, but the woman in the picture was my mother in law. I wanted to be 100% sure so I showed the picture to my husband. He laughed and said "Wow, that IS my mom".
How amazing is it that this girl I have never met in real life happened to (unknowingly) cross paths with my mother in law in a foreign country of 32 million people, randomly take her picture while driving by in a car, and post it in our tiny little group of girls. It's a small world after all.
Over the past few years I've made a few girlfriends that were also Americans married to Moroccans. We're scattered all over the world, but we are in a private group on Facebook. There are just a few of us and we have become very good friends. We share everything from funny stories about our day, to our medical problems, to issues with the world - and everything in between. Often times we will randomly post pictures of our travels to Morocco.
Today the admin of the group changed our cover photo to a really pretty picture of a woman standing on the side of the road she had taken while visiting Morocco. The woman was in a blue dress and was wearing a blue head scarf. She was standing in front of a white building with a blue/green door and the sky was in the background. It was a beautiful picture, but there was something familiar about the woman. I stared at the picture for a few minutes in disbelief before finally asking her where she took it. She said she took it in the town I used to live in in Morocco. I could not believe it, but the woman in the picture was my mother in law. I wanted to be 100% sure so I showed the picture to my husband. He laughed and said "Wow, that IS my mom".
How amazing is it that this girl I have never met in real life happened to (unknowingly) cross paths with my mother in law in a foreign country of 32 million people, randomly take her picture while driving by in a car, and post it in our tiny little group of girls. It's a small world after all.
Wednesday, March 7, 2012
I'm baaaaack!!
Well the foot injury took longer to heal than expected, but since this past weekend I've been back to exercising. I have been going to the gym, but I am starting insanity tonight, which is perfect timing, as a few girls and I have started our version of "The Biggest Loser". We have 8 weeks, with weekly weigh ins and will base the winners each week on percentage of weight lost. I am so very excited that I have several other women who are as invested in their health as I am. We're keeping each other motivated, and it's not all kumbaya....we're definitely in it to win it, and phrases like "don't be sad when I kick your ass at this" have been thrown around more than once! I know that we're all very determined to get our weight in check, and it's really fun to have other people focused on the same goals as you are....the competition aspect isn't hurting any of us either!
I am very excited because I believe wholeheartedly that in the next 7.5 weeks I can get into the 140's. I'm holding myself to that goal. I cannot remember ever seeing 149 on the scale....maybe in elementary school? Who knows how long it's been, but I can say with full confidence that I WILL get there, and I will get there by the end of this competition. Along with the lower numbers on the scale, I am looking forward to seeing definition. I have muscles; they're just covered in a layer of fat. This is where Insanity is going to help, I know its going to change my body. I'm dreaming of the day my stomach is flat! Actually, I'm not just dreaming, I'm OWNING that it will happen.
I just want to say that I have full confidence that any of you who want to lose weight - can. And I want everyone to know that if you ever need any support from me, I will be here for you. Often times weight loss is overwhelming. I will never tell you it's been easy, but I will tell you it's been worth it, and it's been most helpful to have people who can identify with what I'm going through. The girls in this competition with me, they're helping me more than they know, and I'm happy to pass along that support and motivation to anyone that needs it.
I am very excited because I believe wholeheartedly that in the next 7.5 weeks I can get into the 140's. I'm holding myself to that goal. I cannot remember ever seeing 149 on the scale....maybe in elementary school? Who knows how long it's been, but I can say with full confidence that I WILL get there, and I will get there by the end of this competition. Along with the lower numbers on the scale, I am looking forward to seeing definition. I have muscles; they're just covered in a layer of fat. This is where Insanity is going to help, I know its going to change my body. I'm dreaming of the day my stomach is flat! Actually, I'm not just dreaming, I'm OWNING that it will happen.
I just want to say that I have full confidence that any of you who want to lose weight - can. And I want everyone to know that if you ever need any support from me, I will be here for you. Often times weight loss is overwhelming. I will never tell you it's been easy, but I will tell you it's been worth it, and it's been most helpful to have people who can identify with what I'm going through. The girls in this competition with me, they're helping me more than they know, and I'm happy to pass along that support and motivation to anyone that needs it.
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