Noah's surgery is in 2 weeks. It is coming way too fast for my liking. Next week he has his very long pre-operative clinic day (x-rays, blood work, child life, surgeon) and then he is being pulled from school to keep him as healthy as we can.
So I thought I would just post on how we are doing: On the whole we are actually functioning ok. After the initial shock wore off, I think we just fell back into our normal day-to-day rhythm. However, that said, we also have moments of grief overtake us. I have to admit I get very sad when I wonder why Noah has to endure such things. I also wonder why kids have to be sick ever...doesn't seem very fair to me.
We bought Noah a book about staying in the hospital. He likes to read it and he asks us lots of questions about the hospital but overall he is quite oblivious to what is going on. I do, however think he senses "something" is going on - as he is more clingy to us.
Today Keith booked our hotel room close to the hospital so we don't have to wake up super early to get down there. For some reason, hearing of the booking made it seem real and I became a blubbering mess. I cried so much that I can't leave my office now or I will draw a great deal of attention due to my puffy and red eyes. I also only just realized that we won't see Layla for quite a few days and that made me equally upset (we plan to have us both by Noah's bed while he is in the ICU and then when we get to the ward take turns staying with him). She is too young to understand and I can't help but wonder if she will wonder where we are. That breaks my heart.
Tonight is DQ Miracle Treat Day - raising money for local hospitals. It feels fitting that it falls so close to Noah's operation. We will proudly buy blizzards and feed those sugary treats to our kids tonight to support a good cause. Quite frankly, when you are in our shoes, it seems like feeding sugar to children is the last thing to worry about right now...I am sure they will love it!
Showing posts with label Cardiac. Show all posts
Showing posts with label Cardiac. Show all posts
Thursday, August 11, 2011
Monday, July 25, 2011
Talking about surgery
I have been told by other parents, that I should blog about our struggles with Noah's health issues because other people with chronically ill children may benefit. With that in mind I thought I would blog about a big issue: how to tell your child that he has to have surgery - for Noah, one that he can't live without. At Sick Kids we are blessed with Child Life Specialists who talk to kids about surgeries and are absolutely amazing. However, until our pre-op clinic, we have to handle it ourselves.
When we went to cardiac clinic two weeks ago, we told Noah we had to do some tests on his heart. He thought they were fixing his heart, and told us so. We didn't agree or disagree but he seemed ok with it.
On our own, Keith and I both started talking to Noah about the surgery. We aren't trying to dwell on it too much or he will be more afraid of it arriving, but we do want him to be aware of it. A few nights ago, when Noah was telling me how he took a train, subway and bus to the hospital two weeks ago, I told him we would be going back soon for the doctors to fix his heart. He was ok with this and sort of brushed the thought aside and kept telling me about his train trip.
Last night, while Keith was putting Noah to bed, he also brought it up by telling him he would have to go to the hospital soon to get his heart fixed. In a completely gut wrenching moment, Noah told Keith he was scared. Keith answered him in the best way possible by agreeing that it was scary, and that mommy or daddy would be there with him at all times. It is absolutely important that we don't lie to Noah by telling him it isn't scary or that it won't hurt. We both refuse to do this - it will just serve to make Noah loose trust in us. As a nurse you are taught to be honest, but that doesn't mean you can't add a bit of hope in there: "Yes, this will hurt, but I will hold your hand and when it is done we can pick out a toy out of the treasure chest" (A box of trinket toys for kids around Noah's age who are afraid of procedures that will hurt).
So at dinner last night Keith was telling me, for Noah's sake, that they had spoke of going to the hospital soon. Noah instantly got a scared look on his face. I just reiterated that we will always be there for him - either Daddy or Mommy. But that we also have to look after Layla, so we will take turns staying with him.
I am trying to not dwell on it too much - so as not to make him fear the event. But I also don't want him walking into the hospital in a month's time, thinking we are just going for normal tests again. I am not too keen on telling him they will be cutting him open to get to his heart - so I am leaving that for the Child Life Specialist, who uses a muppet-type of doll to explain this. Anyone who has had a child go through surgery at this age knows how tricky it can be. I do, however, thank the heaven's that we were able to hold off until he was 3 years old because at 2 years old he would have been hard to reason with and speak to so this makes it somewhat easier.
He is doing ok otherwise though. We went for a long bike ride and he pedaled most of the way - he got tired near the end but after a short break he was excited to go again. He isn't eating much lately, which I suppose is to be expected - with heart conditions, when the heart doesn't work optimally, one of the first places to take notice of heart failure is the stomach (think of the fight or flight response - same deal). He is still laying around a fair bit but he doesn't look ill to me. I am thankful we are going to repair his heart, because having a surgery hanging over our heads for the past two years has been very hard and we have hope that he will feel and act much better after the surgery, even though his heart still won't be 100%.
So that is our current struggle surrounding the heart condition. It consumes a lot of our brain power and emotions but we still carry on our day-to-day living, which at times can seem odd given what we face in a month's time.
When we went to cardiac clinic two weeks ago, we told Noah we had to do some tests on his heart. He thought they were fixing his heart, and told us so. We didn't agree or disagree but he seemed ok with it.
On our own, Keith and I both started talking to Noah about the surgery. We aren't trying to dwell on it too much or he will be more afraid of it arriving, but we do want him to be aware of it. A few nights ago, when Noah was telling me how he took a train, subway and bus to the hospital two weeks ago, I told him we would be going back soon for the doctors to fix his heart. He was ok with this and sort of brushed the thought aside and kept telling me about his train trip.
Last night, while Keith was putting Noah to bed, he also brought it up by telling him he would have to go to the hospital soon to get his heart fixed. In a completely gut wrenching moment, Noah told Keith he was scared. Keith answered him in the best way possible by agreeing that it was scary, and that mommy or daddy would be there with him at all times. It is absolutely important that we don't lie to Noah by telling him it isn't scary or that it won't hurt. We both refuse to do this - it will just serve to make Noah loose trust in us. As a nurse you are taught to be honest, but that doesn't mean you can't add a bit of hope in there: "Yes, this will hurt, but I will hold your hand and when it is done we can pick out a toy out of the treasure chest" (A box of trinket toys for kids around Noah's age who are afraid of procedures that will hurt).
So at dinner last night Keith was telling me, for Noah's sake, that they had spoke of going to the hospital soon. Noah instantly got a scared look on his face. I just reiterated that we will always be there for him - either Daddy or Mommy. But that we also have to look after Layla, so we will take turns staying with him.
I am trying to not dwell on it too much - so as not to make him fear the event. But I also don't want him walking into the hospital in a month's time, thinking we are just going for normal tests again. I am not too keen on telling him they will be cutting him open to get to his heart - so I am leaving that for the Child Life Specialist, who uses a muppet-type of doll to explain this. Anyone who has had a child go through surgery at this age knows how tricky it can be. I do, however, thank the heaven's that we were able to hold off until he was 3 years old because at 2 years old he would have been hard to reason with and speak to so this makes it somewhat easier.
He is doing ok otherwise though. We went for a long bike ride and he pedaled most of the way - he got tired near the end but after a short break he was excited to go again. He isn't eating much lately, which I suppose is to be expected - with heart conditions, when the heart doesn't work optimally, one of the first places to take notice of heart failure is the stomach (think of the fight or flight response - same deal). He is still laying around a fair bit but he doesn't look ill to me. I am thankful we are going to repair his heart, because having a surgery hanging over our heads for the past two years has been very hard and we have hope that he will feel and act much better after the surgery, even though his heart still won't be 100%.
So that is our current struggle surrounding the heart condition. It consumes a lot of our brain power and emotions but we still carry on our day-to-day living, which at times can seem odd given what we face in a month's time.
Thursday, July 14, 2011
Noah's heart
...and so, Noah needs more surgery...and soon.
That is all we know up to this point.
As I tell people this, I do so in a detached manner that seems to alarm the person on the receiving end. I was telling Noah's teacher yesterday who said, "Um...this is a small surgery?". I respond, "No...it is open heart surgery". She looks at me and says cautiously, "...you are handling this....well....". It sort of makes me feel like a horrible parent. Keith is a bit detached too. To him, we knew this was coming so it is just what we expected. To me, I seem to be spitting out the information but not absorbing it. I talk about it in that detached manner nurses do: "I have a repaired VSD, ASD, Co-arct patient in room 6 here for pre-op workup for a muscle bundle resection and valve repair....". It is slightly demented how I am treating it, to be honest. I am walking around acting as though I didn't receive devastating news yesterday. I think every minute though, my layer of ice is melting and some poor sap will ask how the appointment went and I will finally dissolve into tears of grief.
Don't get me wrong, I did tear up as I BBM'd my brother to tell him what was going on as I stood booking his next appointment in the cardiac clinic. He was (and always is) the first person I tell these things to and he always says just the right thing to make me tear up. He is always very supportive. I didn't want to cry in front of Noah though - he doesn't know what is happening. He knows his heart needs to be fixed by a doctor, and that is it so far.
So the day was ok. I always have minor panic attacks walking into Sick Kids these days. After working there for four years in total, I find that those memories and experiences are completely obliterated and replaced by the memory of the hospital stay with Noah. Truthfully, the incident traumatized me, and likely Keith. But I can't really get past it. So I was a bit anxious all day. We took Noah on the train and subway so that distracted us. He was such a good boy.
When we got there, our appointment was supposed to be at 9am and they told us it actually was at 11am. Noone called to tell us so I got quite upset. They saw us at 9:10. They were great and explained to Noah what would happen and he lay on the table, quietly watching Treehouse tv for nearly an hour and a half. He fell asleep at times and was quite warm (Turns out he also had a fever of 103 degrees - not sure why yet). After the echo he had an ECG where he just lay quietly on the table again, prompting the RN to ask him if he "is always this serious".
We had to eat lunch and pass some time while we waited for our 12:30 appointment with the cardiologist. This wait was the longest because we knew the news would be bad but we just wanted to hear it. We had to see a fellow first, and that was even more torture because she couldn't tell us what was wrong yet. Finally we see our cardiologist and basically all he could tell us was that the muscle that is building up under his aortic valve has gotten so crowded that we can't wait any longer to do the surgery. He couldn't tell us if the valve needs replacing or anything more. We have to wait until his case is presented to the surgeon and cardiologists on Monday. Keith asked some great questions and I felt like I just sat there with a goofy look on my face. Somewhere between a grin and a grimace.
Noah fell asleep on the bus ride home - and then we were settled on the couch (him, slightly febrile still) relaxing and watching tv.
I carried on (as did Keith) normally. Making jokes, playing and having a good time with the kids. After Noah had some Tylenol he was a bundle of energy and we had a great time playing. For yesterday, at least, I refused to let his defect and surgery affect our time together. I refused to sit beside him on the couch quietly crying. I just wanted us to have a normal and fun time. And so, I let him throw foam blocks at me and laugh hysterically, even though we aren't supposed to throw toys at people, because lets face it - the kid needs to be let off on some of the rules now and then.
Sometimes my mind wanders to all that can go wrong. I know all this from working there and this knowledge destroys me. I think of when he will be healing and we have to remove his chest drains or pacing wires and how it will hurt him. I think of him laying in bed, intubated and on a ventilator. It is gut wrenching. I can't get these images out of my mind and that is why I choose to be numb for now. When he was a baby it went so fast and was a life-or-death operation. We didn't have time to dwell on the situation. With a week old baby, you are coping with being a new parent, mom has post-partum healing herself, struggling to figure out how to breastfeed, living on no sleep. We had no choice but to deal and move on. This time, the waiting....it's excruciating...
So, as I type this, the ice melts a bit more and I get a bit more sad. Waiting for Monday and even for our surgical time (which will be before Halloween) is like a huge weight hovering over us. Once we get that date, we can set forward with our plan: who will stay in the hospital, who will stay with layla, who will work, who will watch Jade, etc. We plan for 10 days in hospital and who knows how many more days at home recovering after.
I will update when I know more. :)
That is all we know up to this point.
As I tell people this, I do so in a detached manner that seems to alarm the person on the receiving end. I was telling Noah's teacher yesterday who said, "Um...this is a small surgery?". I respond, "No...it is open heart surgery". She looks at me and says cautiously, "...you are handling this....well....". It sort of makes me feel like a horrible parent. Keith is a bit detached too. To him, we knew this was coming so it is just what we expected. To me, I seem to be spitting out the information but not absorbing it. I talk about it in that detached manner nurses do: "I have a repaired VSD, ASD, Co-arct patient in room 6 here for pre-op workup for a muscle bundle resection and valve repair....". It is slightly demented how I am treating it, to be honest. I am walking around acting as though I didn't receive devastating news yesterday. I think every minute though, my layer of ice is melting and some poor sap will ask how the appointment went and I will finally dissolve into tears of grief.
Don't get me wrong, I did tear up as I BBM'd my brother to tell him what was going on as I stood booking his next appointment in the cardiac clinic. He was (and always is) the first person I tell these things to and he always says just the right thing to make me tear up. He is always very supportive. I didn't want to cry in front of Noah though - he doesn't know what is happening. He knows his heart needs to be fixed by a doctor, and that is it so far.
So the day was ok. I always have minor panic attacks walking into Sick Kids these days. After working there for four years in total, I find that those memories and experiences are completely obliterated and replaced by the memory of the hospital stay with Noah. Truthfully, the incident traumatized me, and likely Keith. But I can't really get past it. So I was a bit anxious all day. We took Noah on the train and subway so that distracted us. He was such a good boy.
When we got there, our appointment was supposed to be at 9am and they told us it actually was at 11am. Noone called to tell us so I got quite upset. They saw us at 9:10. They were great and explained to Noah what would happen and he lay on the table, quietly watching Treehouse tv for nearly an hour and a half. He fell asleep at times and was quite warm (Turns out he also had a fever of 103 degrees - not sure why yet). After the echo he had an ECG where he just lay quietly on the table again, prompting the RN to ask him if he "is always this serious".
We had to eat lunch and pass some time while we waited for our 12:30 appointment with the cardiologist. This wait was the longest because we knew the news would be bad but we just wanted to hear it. We had to see a fellow first, and that was even more torture because she couldn't tell us what was wrong yet. Finally we see our cardiologist and basically all he could tell us was that the muscle that is building up under his aortic valve has gotten so crowded that we can't wait any longer to do the surgery. He couldn't tell us if the valve needs replacing or anything more. We have to wait until his case is presented to the surgeon and cardiologists on Monday. Keith asked some great questions and I felt like I just sat there with a goofy look on my face. Somewhere between a grin and a grimace.
Noah fell asleep on the bus ride home - and then we were settled on the couch (him, slightly febrile still) relaxing and watching tv.
I carried on (as did Keith) normally. Making jokes, playing and having a good time with the kids. After Noah had some Tylenol he was a bundle of energy and we had a great time playing. For yesterday, at least, I refused to let his defect and surgery affect our time together. I refused to sit beside him on the couch quietly crying. I just wanted us to have a normal and fun time. And so, I let him throw foam blocks at me and laugh hysterically, even though we aren't supposed to throw toys at people, because lets face it - the kid needs to be let off on some of the rules now and then.
Sometimes my mind wanders to all that can go wrong. I know all this from working there and this knowledge destroys me. I think of when he will be healing and we have to remove his chest drains or pacing wires and how it will hurt him. I think of him laying in bed, intubated and on a ventilator. It is gut wrenching. I can't get these images out of my mind and that is why I choose to be numb for now. When he was a baby it went so fast and was a life-or-death operation. We didn't have time to dwell on the situation. With a week old baby, you are coping with being a new parent, mom has post-partum healing herself, struggling to figure out how to breastfeed, living on no sleep. We had no choice but to deal and move on. This time, the waiting....it's excruciating...
So, as I type this, the ice melts a bit more and I get a bit more sad. Waiting for Monday and even for our surgical time (which will be before Halloween) is like a huge weight hovering over us. Once we get that date, we can set forward with our plan: who will stay in the hospital, who will stay with layla, who will work, who will watch Jade, etc. We plan for 10 days in hospital and who knows how many more days at home recovering after.
I will update when I know more. :)
Wednesday, January 19, 2011
Grief
As I sit on the floor of my living room in the early hours of the morning enjoying my morning coffee, an ]overwhelming surge of grief passes through me, so strong and suffocating that I have to stifle a sob. This isn't the first time I have had these random bursts of grief. They are not triggered by any noticeable precipitating event. The emotion fills me and makes me feel like I am drowning in grief. They bring tears to my eyes and have often knocked me to the ground, clutching at my chest - struggling to breathe.
I close my eyes and take a deep breath and wait for the moment to be over. It doesn't take me long to compose myself and I sit back and take another sip of coffee. I shake my head, as if that resets my brain, and work at getting myself up and out the door to catch my morning train.
This grief that encompasses me is always present in the back of my mind. It is solely related to Noah's health. I am sure these attacks are not unique - anyone who has experienced any level of sadness so profound that it changes their life forever, will have these attacks...at least that is what I tell myself.
Noah's diagnosis was so unexpected, and so feared (given my personal history of working with this population), that the 24 hours we spent leading up to being admitted to the hospital are so ingrained in my mind that they give me nightmares. The moments spent holding Noah, as they performed an hour and a half echo, calling out each defect one by one, is enough to make me break into a cold sweat.
At the present, Noah is the picture of health. He is a tall, healthy looking boy with rosy cheeks and full hair. His size is so impressive that he looks older than he truly is. His speech is so astounding that he sounds older than he is - but in reality, he is just over 2.5 years old and is living with a chronic condition that will impact the rest of his life. Noah has many barriers to face in life - many of which I am not comfortable sharing - but he is such a healthy looking boy that you would easily forget that he was not "normal".
Nothing about his behaviour, energy or physical appearance would give away the true secret. It is for this reason that I often forget we have a sick child. We treat him as we would any child and I think because of this, the grief finds moments to take over my world and bring the startling reality to the forefront at the most random times: sometimes I am just running on the treadmill and I have to stop to take a moment; sometimes I find myself reading and my mind wanders; other times, like today, I am just having a quiet moment. It is enough to make you want to occupy your mind every moment of every day, just so this grief can't grab hold and drown you...of course, this is impossible.
As such, I find I have to accept this grief. The attacks seem to come more regularly as we approach his cardiology appointments - as I know that we have another surgery in the near future. It is the "when" that is unknown and that is causing a lot of my anxiety. I find talking to Keith helps a lot because he is so level-headed and realistic. He has his own moments where I find him sitting alone in our room on the edge of the bed, looking like his world has crumbled - but we are there for each other and find strength in this shared experience.
I try not to let my knowledge affect me too much but of course that is impossible. Knowledge is there, whether you want it to be or not. I try not to think about what it will be like to hold down a 3 year old Noah while the nurse pulls a chest tube out of his body, while he is conscious. I try not to think of the pain he will endure when they crack open his chest and sew his bones back together. Of course, I have seen this all first hand, a hundred times, and that makes it impossible to forget.
Of course, this grief and panic naturally spreads to my fears for our beautiful Layla - she is such a healthy looking baby, but I know first-hand how looks can be deceiving. Is she healthy? Sure...for now...but who is to say that won't change? I picture her going through a similar ordeal and it rocks me with emotion so great that I want to bury my head in the sand.
Writing this, I sound like I could benefit from a good therapist - and maybe I could. But this grief doesn't control me - they are just brief blips in my life. It is just part of being a mom to a chronically ill child. I am sure many people have the same sort of grief over something: a sick parent, the passing of a loved one, a frightening past....
I can only hope that in sharing my feelings that they will benefit others to know they aren't alone in their grief
I close my eyes and take a deep breath and wait for the moment to be over. It doesn't take me long to compose myself and I sit back and take another sip of coffee. I shake my head, as if that resets my brain, and work at getting myself up and out the door to catch my morning train.
This grief that encompasses me is always present in the back of my mind. It is solely related to Noah's health. I am sure these attacks are not unique - anyone who has experienced any level of sadness so profound that it changes their life forever, will have these attacks...at least that is what I tell myself.
Noah's diagnosis was so unexpected, and so feared (given my personal history of working with this population), that the 24 hours we spent leading up to being admitted to the hospital are so ingrained in my mind that they give me nightmares. The moments spent holding Noah, as they performed an hour and a half echo, calling out each defect one by one, is enough to make me break into a cold sweat.
At the present, Noah is the picture of health. He is a tall, healthy looking boy with rosy cheeks and full hair. His size is so impressive that he looks older than he truly is. His speech is so astounding that he sounds older than he is - but in reality, he is just over 2.5 years old and is living with a chronic condition that will impact the rest of his life. Noah has many barriers to face in life - many of which I am not comfortable sharing - but he is such a healthy looking boy that you would easily forget that he was not "normal".
Nothing about his behaviour, energy or physical appearance would give away the true secret. It is for this reason that I often forget we have a sick child. We treat him as we would any child and I think because of this, the grief finds moments to take over my world and bring the startling reality to the forefront at the most random times: sometimes I am just running on the treadmill and I have to stop to take a moment; sometimes I find myself reading and my mind wanders; other times, like today, I am just having a quiet moment. It is enough to make you want to occupy your mind every moment of every day, just so this grief can't grab hold and drown you...of course, this is impossible.
As such, I find I have to accept this grief. The attacks seem to come more regularly as we approach his cardiology appointments - as I know that we have another surgery in the near future. It is the "when" that is unknown and that is causing a lot of my anxiety. I find talking to Keith helps a lot because he is so level-headed and realistic. He has his own moments where I find him sitting alone in our room on the edge of the bed, looking like his world has crumbled - but we are there for each other and find strength in this shared experience.
I try not to let my knowledge affect me too much but of course that is impossible. Knowledge is there, whether you want it to be or not. I try not to think about what it will be like to hold down a 3 year old Noah while the nurse pulls a chest tube out of his body, while he is conscious. I try not to think of the pain he will endure when they crack open his chest and sew his bones back together. Of course, I have seen this all first hand, a hundred times, and that makes it impossible to forget.
Of course, this grief and panic naturally spreads to my fears for our beautiful Layla - she is such a healthy looking baby, but I know first-hand how looks can be deceiving. Is she healthy? Sure...for now...but who is to say that won't change? I picture her going through a similar ordeal and it rocks me with emotion so great that I want to bury my head in the sand.
Writing this, I sound like I could benefit from a good therapist - and maybe I could. But this grief doesn't control me - they are just brief blips in my life. It is just part of being a mom to a chronically ill child. I am sure many people have the same sort of grief over something: a sick parent, the passing of a loved one, a frightening past....
I can only hope that in sharing my feelings that they will benefit others to know they aren't alone in their grief
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