When this whole cardiac journey is over, I will have been off for four months. Those who know me well, know I don't know how to relax. I can't sit through a movie. I must at all times have some project going on in the house to do when the kids are asleep and sitting with the kids at the park is a painful act of patience. So being off for four months is sheer torture to me. I like working and miss my job right now.
To be fair, the first month was spent in hospital, the second month was filled with narcotic hazes and memory loss, now I am into month three and I'm getting bored. I don't have the energy yet to do much walking and I'm on drugs that make me susceptible to harsh burns if I'm outdoors. So I spend 90% of my time indoors and it is rough.
How do I spend my time?
I have weekly:
-blood work
-stroke rehab
-cardiac rehab (in addition to working out 3x/week with their program at home)
-social work
-massage therapy (for the chest contractions post-op and the subsequent knots in my back)
And every six weeks I spend half a day at:
-pacemaker clinic
-cardiac clinic
In addition I can do drop in appointments to pacemaker clinic to have adjustments made to my rate. I've been trying to decrease it and make it less sensitive to movement.
So that makes up a large portion of my time.
However, I usually only have one appointment a day so how do I spend the rest of my time? Lately, I have no attention (lets be honest, it has never been that great). It may be the stroke or it may be boredom. My social worker suggested I have a bunch of easy activities and rotate through them that I can do indoors.
My list is like looking at an elderly person's list. Seriously, what can a young person do indoors?
-knitting
-cross-stitching (great for stroke rehab)
-puzzles
-sudoku
-zen-doodling
-read (I have no attention span for reading now which makes me sad because I always have my nose in a book)
-publishing my article from my Masters degree
-working on my two children's books
-playing the flute
-watch tv
Thank God I have wonderful friends. A few are on mat leave, some are shift workers, others take a day off and visit me. They make my days way more enjoyable.
I don't have the energy to clean for long periods of time or walking - so sitting around the house is isolating and excruciating. I'm currently getting our money's worth from Netflix (we don't have cable so I am not able to catch up with DOOL). Shopping for clothes is out because I can't quite move my pacemaker arm yet to try on shirts. I have a gift card I'm dying to use for a new wardrobe but maybe in a month I'll be able to endure a long trip to the mall.
So there you have it: I am absolutely dreadful at staying at home. I don't know how to relax, and I currently have elderly hobbies.
I drive Keith nuts when he comes home, insisting he sit and talk to me all night long. To distract me he sits me in front of a puzzle and I spend the rest of the night fighting Jade off the pieces. Not very relaxing...
Monday, September 3, 2012
Thursday, August 2, 2012
Pacing my way through life
Since getting the pacemaker one week ago, I have been through a lot. The experience itself was particularly traumatizing and still makes me cringe. Getting the pacemaker checked at the clinic was also horrifying and I had to barter my way to a later appointment in 8 weeks because I can't face going back there any time soon. I spent a large portion of this week spontaneously breaking into tears and getting very upset at the pacemaker.
Going through all this I have had many people ask my why I'm so upset - without the pacemaker I would be in a non-life sustaining rhythm. This is true. However, consider how this happened:
I went to emergency in atrial fibrillation which came on out of the blue. They left me with my heart beating at 170bpm for 24 hours (which, I have to say doesn't feel good). Then they took me to the CCU, sedated me to perform cardioversion. Upon waking I saw it didn't work. So, they put me on an amiodarone drip for 24 hours, which burned my veins. Then, they told me after 24 hours on this, cardioversion may work better so we would try again tomorrow. The next day I'm told I'm getting a pacemaker at 8am. WHAT?!?! No time to adjust to the idea. No discussion. People started coming to do consent, discuss what the pacemaker looks like, restrictions on my daily living. Then before I know it I'm being wheeled into a procedure room and while I'm wide awake they implant the device while I sob on the table. After returning to my room I couldn't stop crying.
I wasn't kidding...this really traumatized me! And I'm angry. Very angry. I can deal with the cardiac tumour - it happened and it is over. However, this rhythm issue was unexpected and made me a cardiac patient for life. I'm really having a hard time adjusting to this thought. In addition, being on coumadin, I was told I can't get pregnant again, unless it is planned carefully with my cardiologist. I would have to give myself 2x daily injections of enoxaparin for the whole conception/pregnancy period (which btw, hurts like hell). Having conceived Noah in a less than romantic state with the assistance of a fertility clinic, I don't want to go through that again. Not to mention the worry about being pregnant on blood thinners and the stress on my heart. So, just like that, my dream of 3 children is shot.
This week, Keith suggested I go see a social worker to deal with some of the anger and to work out this trauma. She is a wonderful woman at the hospital and she made me feel quite a lot better in just one session: It is normal to feel as I do - I went through a lot in 3 weeks! My life was drastically altered in the span of 24 hours getting this pacemaker. So she is mostly there for me to vent to and teach me how to accept what has happened.
In the process, she discussed mindfulness with me. For those that don't know, mindfulness is the practice of being present in the moment and not letting your mind wander. If your mind does wander, you bring it back to the present in a non-judgmental manner. It is a very difficult, but useful skill and is the latest and greatest tool to use in primary care. During my first session, she taught me a new way to practice mindfulness that makes it easier to focus and quiet your mind (she thinks I have to much time to think and worry while I sit at home).
It is called Zen tangle or Zen doodling. I have ZERO artistic ability. The fact that my baby sister is a talented artist makes me wonder if we come from the same family. However, I find this quite soothing and quite frankly, it gives me something to do all day long (don't forget I can't move my left arm for 4 weeks until the pacemaker leads are "set" in my body, I can't lift anything heavier than a bag of milk because of my sternal incision, I can't walk farther than 5 minutes without getting breathless and I had a stroke that limits the functioning of my right hand....Life is a bit boring right now!).
So I will share my doodles with you....they are my therapy that keeps me from wondering if I will be paced forever, if I will live long enough to see my kids get married, if I will ever be off of blood thinners, and most importantly: if my body tries to die one day, will my pacemaker keep ticking thereby making me immortal?
Going through all this I have had many people ask my why I'm so upset - without the pacemaker I would be in a non-life sustaining rhythm. This is true. However, consider how this happened:
I went to emergency in atrial fibrillation which came on out of the blue. They left me with my heart beating at 170bpm for 24 hours (which, I have to say doesn't feel good). Then they took me to the CCU, sedated me to perform cardioversion. Upon waking I saw it didn't work. So, they put me on an amiodarone drip for 24 hours, which burned my veins. Then, they told me after 24 hours on this, cardioversion may work better so we would try again tomorrow. The next day I'm told I'm getting a pacemaker at 8am. WHAT?!?! No time to adjust to the idea. No discussion. People started coming to do consent, discuss what the pacemaker looks like, restrictions on my daily living. Then before I know it I'm being wheeled into a procedure room and while I'm wide awake they implant the device while I sob on the table. After returning to my room I couldn't stop crying.
I wasn't kidding...this really traumatized me! And I'm angry. Very angry. I can deal with the cardiac tumour - it happened and it is over. However, this rhythm issue was unexpected and made me a cardiac patient for life. I'm really having a hard time adjusting to this thought. In addition, being on coumadin, I was told I can't get pregnant again, unless it is planned carefully with my cardiologist. I would have to give myself 2x daily injections of enoxaparin for the whole conception/pregnancy period (which btw, hurts like hell). Having conceived Noah in a less than romantic state with the assistance of a fertility clinic, I don't want to go through that again. Not to mention the worry about being pregnant on blood thinners and the stress on my heart. So, just like that, my dream of 3 children is shot.
This week, Keith suggested I go see a social worker to deal with some of the anger and to work out this trauma. She is a wonderful woman at the hospital and she made me feel quite a lot better in just one session: It is normal to feel as I do - I went through a lot in 3 weeks! My life was drastically altered in the span of 24 hours getting this pacemaker. So she is mostly there for me to vent to and teach me how to accept what has happened.
In the process, she discussed mindfulness with me. For those that don't know, mindfulness is the practice of being present in the moment and not letting your mind wander. If your mind does wander, you bring it back to the present in a non-judgmental manner. It is a very difficult, but useful skill and is the latest and greatest tool to use in primary care. During my first session, she taught me a new way to practice mindfulness that makes it easier to focus and quiet your mind (she thinks I have to much time to think and worry while I sit at home).
It is called Zen tangle or Zen doodling. I have ZERO artistic ability. The fact that my baby sister is a talented artist makes me wonder if we come from the same family. However, I find this quite soothing and quite frankly, it gives me something to do all day long (don't forget I can't move my left arm for 4 weeks until the pacemaker leads are "set" in my body, I can't lift anything heavier than a bag of milk because of my sternal incision, I can't walk farther than 5 minutes without getting breathless and I had a stroke that limits the functioning of my right hand....Life is a bit boring right now!).
So I will share my doodles with you....they are my therapy that keeps me from wondering if I will be paced forever, if I will live long enough to see my kids get married, if I will ever be off of blood thinners, and most importantly: if my body tries to die one day, will my pacemaker keep ticking thereby making me immortal?
Thursday, July 26, 2012
And then there were two of us...
4 years
3 open heart surgeries
2 people
1 family
Does this seem ridiculous to anyone else?
It is currently 5:45 am and my pain medication has worn off. As I wait for it to kick in it occurred to me that I need to blog my last two weeks. I spent it in hospital - four days trying to figure out what was wrong, then 36 hours later being operated on with a 5 day recovery in hospital and now three months of rehabilitation at home.
It all started Sunday - my day to wake with the children. Noah wanted cookies for breakfast and me, being the shining example of a mother, was giving them to him. Suddenly, my right arm went totally weak and I felt lightheaded. I sat on the floor and felt the room spin. I lay down and my sweet Noah asked me if I was ok. I lay down and yell "KEITH! HELP!" until I heard him stir and come down to find me in the kitchen. I told him my arm wasn't moving and he proceeded to ask me a bunch of questions: "Do you know where you are? Whats your name? Where do we live? What are the kids names?" I got the answers wrong and kept bursting into tears because I was very aware that I was not answering correctly but couldn't find the right answer. After 20 min's Keith got an ambulance to come and they decided by blood sugar was low (this has always been an issue of mine) and proceeded to feed me disgusting sugar-in-a-tube. After I was able to sit, they had keith feed me toast and honey. I held the plate in my left hand and they all watched as three times in a row, my right hand fell into the toast without my noticing. Somehow they convinced me to go the emergency room just to have the hand checked out. Especially once I told them that about a month back the left arm went suddenly numb at work but after an hour the feeling came back. So I felt very sheepish and silly as I walked to the ambulance in my driveway, dressed in my PJ's.
Very quickly the emerg doc had decided I had just had a migraine and gave me some meds and oxygen to relieve the pain (didn't work and I still couldn't move my arm). I don't know if he believed me so I had him hand me a cup of water, which I ended up spilling all over myself as I tried to hold the cup. He said he could do a CT scan but didn't recommend it: I was young, may want more children, and he was sure my arm function would come back and a CT scan was like a years worth of x-rays. Feeling a bit silly, I agreed to go home.
That night I attempted to eat dinner with my right hand and couldn't even hold the cutlery. My left hand helped a bit but I have never realized how much we rely on both hands to function. I couldn't even wash my hair and forget putting on makeup!
In the morning, there was no improvement. If it was paralyzed from a migraine it should have been better by morning, surely? So Keith convinced me to take the kids to school and go to emerg again for the CT scan. To save writing about many boring hours logged in the ER here is the summary:
CT scan showed I had a stroke (Left side...that is why my right hand was useless). I wasn't allowed to go home until they found out why a 33 year old woman had a stroke out of the blue.
A doctor, who to this day I'm not sure of his specialty, followed my case right through to discharge. He was a bit awkward to talk to and was shy and a bit of an odd ball, but he checked on me daily pre- and post-op so I liked him. He ordered an MRI, echocardiogram and a transesophageal echo. I was told they were looking for reasons for the stroke such as autoimmune diseases, Musculosclerosis or heart issues. I was moved from the ER to the MACU, which is a holding unit at the hospital for those who need procedures/tests and who will be having a 3'ish day stay.
The following day no tests were done...which made me very bored. Mom and Keith came and kept me company and helped me exercise my right hand.
The next day they moved me out to the neuro floor and planned the MRI and echo. The MRI never happened because I couldn't tell them with certainty that I wasn't pregnant. So in the meantime, they ordered bloodwork to check if I was pregnant and they sent me for my echo. The echo was quick but by the time I got the neuro floor after, I saw the doctor coming to see me. "This can't be good".....
He sits me down and tells me the echo shows a massive benign atrial myxoma: A cardiac tumour. It is so large that as the heart beats, it plops down into the ventricle and then back up. A piece of the tumour had broken off and caused my stroke (and very likely caused my numb arm a month ago). So they were sending me to the CCU that night. "So I'm not going home?"
They needed to do the trans esophageal echo (TEE) to get a better look. I will just say that this was quite traumatic and I bit the doctor shoving the camera going down my throat.
In the CCU I met with the head of cardiac surgery at the hospital. He contemplated operating the following morning but my right hand was getting better daily and he wanted to give it one more day to heal because it would regress a bit with the surgery. I asked him how many of these surgeries he has done. He tells me "2 a year". So, as politely as I could, I asked if I would be better to go to a larger hospital where they have more experience. He was very kind and told me I was more than welcome to, but even large centers won't see these much - and if they do, each individual surgeon will only have done a handful a year as well. No matter how I looked at it, this was a rare surgery and I had to make a choice. Keith and I both felt good about this surgeon. He explained how it is removed and we had 36 hours to wait....
Those 36 hours flew by. Friends and family came to see me. I got special permission to have my kids come and see me in the CCU and I passed the day away as best I could. At night they did a lot of OR prep and Keith, being such a lovely husband, washed my hair in the sink because I couldn't do it for myself. At bedtime they gave me ativan and I slept well. In the morning, they gave me valium: as a result the next morning is nothing more than hints of memories: Me bartering with the surgeon to not use staples on my chest and to use 2 chest tubes instead of 4; saying bye to mom and Keith; dry heaving on the OR table.....and then waking up in excruciating pain.
I have to say that cardiac surgery is by far, the most painful thing I have ever experienced (And I'm including my back labour with non-functioning epidural). I have such respect and appreciation for Noah and his experiences now. There were days where I just wanted to die and would tell anyone who would listen. Even now, 8 days post-op, I can't begin to describe the excruciating rehabilitation that is involved.
I don't have clearly formed memories from the 5 days post-op in the hospital. Keith and Mom fill me in. Apparently when I woke up (after they extubated me) I informed my mom I was going to work on Monday. A while later I asked her if I was still pretty. I also apparently was clearly informed of my care: I told keith I was in Junctional rhythm and that my chest tube was only draining 65cc (I don't remember any of this). I do remember Keith feeding me ice chips, getting loaded up with pain meds and my mom and Nik coming to see me. Nik blowing up and popping a rubber glove which I swore stopped my heart.
It is hard knowing what it coming in your post-operative course, and having worked in cardiology I knew what was coming and I was dreading the removal of the chest tubes. They came out on day 1 post-op: oddly they felt good coming out because I couldn't breathe with them in. Pacing wires stayed in till the day I went home: I had a junctional rhythm so they liked keeping them in. Apparently the junctional rhythm is a result of inflammation from the surgery. The pacing wires hurt more than I expected them to. I had an arterial line, central line and IV in as well. I'm quite battered from those!
Keith was a constant figure at my side. He had taken the kids to school daily but he would come for visiting hours and stay as long as he could, even though I would doze or cry or go for tests. He would leave to pick the kids up and then come back after he put them to bed. He would make me tea, set out water for me at bedtime, he came and gave me my first shower post-op. He had mom's help at home but I know he shouldered a lot during this time. He lost his vacation time to be with me. This man really understands what it means to love "in sickness and in health".
On the day I was supposed to go home, I woke up vomiting. As a results my discharge got a bit delayed. Not sure why I was sick, but i was not thrilled given the last time I threw-up it was 1993. Yeah.....19 years ago. What a streak I had going!
Rehabilitation is long for cardiac surgery. I can't drive for 6 weeks, so I have to have someone here with me to take me to have my twice weekly blood work and my physio for my hand. The stroke complicates things and as such, I am very reliant on my family. The first day home I couldn't go up the stairs without feeling like I was short-of-breath, but a few days later I can do the stairs better. I am sleeping in a chair at night because to sleep on my back feels like being 9 months pregnant and sleeping on your back. Last night was the first time I showered alone. It is exhausting and took me forever, but loosing your independence is humbling and I was happy for some control back. I notice I can do more and more every day. I can't walk far yet but I am getting better for sure. Being healthy before surgery you don't really believe your body will take so long to heal, but it does and its frustrating!
Today I went to emerg because one of my chest tube sites is getting infected. Knowing the issues that can come from that, I decided it was best to just deal with it early. So now, I am on too many drugs to count (I actually got a pill box!): keflex for infection, coumadin and baby aspirin for clotting, iron for low hemoglobin, percocet and tylenol for pain, gravol for the queasies, enoxaparin injections....
I have no appetite, except for lasagna for some reason. It is the only thing I can stomach. Thank goodness we had some in the house.
So now, I have a long sternal incision from my throat to the base of my xyphoid process and two gaping chest tube holes underneath. I know these will fade but I have NO clothes that don't show the scar. I wish I was someone who could wear it proudly but I'm vain I suppose. I hate it. I look forward to when it fades away but will always wish it wasn't there.
I feel this experience should make me grateful for life and for being saved, because quite frankly, if not for the stroke I very well would have died one day soon. The tumour ended up being 7cm x 4cm. The heart isn't much bigger than that. However, I am mostly resentful. I know that sounds bad but look at the top of this blog: in the past 4 years we have had 3 open heart surgeries. We were finally planning a family vacation in August. We were feeling like our lives were turning around. Keith and I have been dealt a poor hand in health it seems and as much as I wish I could be an optimist or a positive person I will not lie. This sucked, I'm angry it happened. I am sad my husband has to take care of me and the kids because I can't. I am furious that someone feels we need to be punished in this way. I will say, however, that I am thankful to the nurses and doctors at the hospital. I am blessed that I had the brains to return to the OR to look into the stroke. I am very happy that the surgeon gave me my life back. Because when all is said and done I didn't want to die young and now hopefully I won't.
***
I went back to emerg: I was in atrial fibrillation and my heart rate was 178. It felt horrible - like my heart was beating out of my chest. They left me in emerg overnight outside the very loud nursing station. I fell asleep somewhere around 5am. At 7am I was woken by a doctor. Eventually they moved me back to the CCU telling me they would cardiovert me. I was in tears and had a big-time panic attack. I was not thrilled with the prospect of being shocked into normal rhythm. The nurses were kind and explained that I would be sedated. At 2pm they sedated me and tried but my baseline rhythm was an unstable junctional rhythm and I went back to atrial flutter. After that, they decided to load me up on amiodarone and try again in 24 hours. They gave me 2 boluses IV and oral. During the second bolus, my mom was kissing me to leave and my heart stopped for 5 seconds. I can't even begin to describe how awful that felt. Then it happened again. That, along with the unstable junctional rhythm meant I had to get a pacemaker. I was booked for 8am the next day.
Getting the pacemaker was a very traumatic and stressful ordeal. They draped my face with a cloth and put an O2 mask on. I am really claustrophobic so I had to ask them to take them off my face as much as they could. Then I could feel everything. They had to numb me 5 times. I also kept panicking and so they very heavily sedated me but it was never enough. I lay on the table sobbing, begging to sit up, and eventually asked Dave, the nurse I could see, to hold my hand. I was so scared. I didn't want a pacemaker and I was upset. I cried all the way back to my room and then for hours afterwards.
They decided to try cardioversion the next morning again and the doctor was positive it would work. When I woke I looked at the monitor: HR 60. Oh my goodness it worked!!! I cried and was so happy. They were even letting me go home that day! However, I couldnt sit up without being dizzy and my BP was very low (70/40). I started vomiting and asked them to set my pacemaker to 80. I have always had a fast heart rate and they agreed after and echo. That night, when my BP was up again (95/60) they let me go home. I should have stayed because I felt nervous being home but I have a pacemaker apptm in the morning tomorrow.
So that is the experience - it sucked. I wish it never happened. I will come to terms with it eventually. Just not now...
3 open heart surgeries
2 people
1 family
Does this seem ridiculous to anyone else?
It is currently 5:45 am and my pain medication has worn off. As I wait for it to kick in it occurred to me that I need to blog my last two weeks. I spent it in hospital - four days trying to figure out what was wrong, then 36 hours later being operated on with a 5 day recovery in hospital and now three months of rehabilitation at home.
It all started Sunday - my day to wake with the children. Noah wanted cookies for breakfast and me, being the shining example of a mother, was giving them to him. Suddenly, my right arm went totally weak and I felt lightheaded. I sat on the floor and felt the room spin. I lay down and my sweet Noah asked me if I was ok. I lay down and yell "KEITH! HELP!" until I heard him stir and come down to find me in the kitchen. I told him my arm wasn't moving and he proceeded to ask me a bunch of questions: "Do you know where you are? Whats your name? Where do we live? What are the kids names?" I got the answers wrong and kept bursting into tears because I was very aware that I was not answering correctly but couldn't find the right answer. After 20 min's Keith got an ambulance to come and they decided by blood sugar was low (this has always been an issue of mine) and proceeded to feed me disgusting sugar-in-a-tube. After I was able to sit, they had keith feed me toast and honey. I held the plate in my left hand and they all watched as three times in a row, my right hand fell into the toast without my noticing. Somehow they convinced me to go the emergency room just to have the hand checked out. Especially once I told them that about a month back the left arm went suddenly numb at work but after an hour the feeling came back. So I felt very sheepish and silly as I walked to the ambulance in my driveway, dressed in my PJ's.
Very quickly the emerg doc had decided I had just had a migraine and gave me some meds and oxygen to relieve the pain (didn't work and I still couldn't move my arm). I don't know if he believed me so I had him hand me a cup of water, which I ended up spilling all over myself as I tried to hold the cup. He said he could do a CT scan but didn't recommend it: I was young, may want more children, and he was sure my arm function would come back and a CT scan was like a years worth of x-rays. Feeling a bit silly, I agreed to go home.
That night I attempted to eat dinner with my right hand and couldn't even hold the cutlery. My left hand helped a bit but I have never realized how much we rely on both hands to function. I couldn't even wash my hair and forget putting on makeup!
In the morning, there was no improvement. If it was paralyzed from a migraine it should have been better by morning, surely? So Keith convinced me to take the kids to school and go to emerg again for the CT scan. To save writing about many boring hours logged in the ER here is the summary:
CT scan showed I had a stroke (Left side...that is why my right hand was useless). I wasn't allowed to go home until they found out why a 33 year old woman had a stroke out of the blue.
A doctor, who to this day I'm not sure of his specialty, followed my case right through to discharge. He was a bit awkward to talk to and was shy and a bit of an odd ball, but he checked on me daily pre- and post-op so I liked him. He ordered an MRI, echocardiogram and a transesophageal echo. I was told they were looking for reasons for the stroke such as autoimmune diseases, Musculosclerosis or heart issues. I was moved from the ER to the MACU, which is a holding unit at the hospital for those who need procedures/tests and who will be having a 3'ish day stay.
The following day no tests were done...which made me very bored. Mom and Keith came and kept me company and helped me exercise my right hand.
The next day they moved me out to the neuro floor and planned the MRI and echo. The MRI never happened because I couldn't tell them with certainty that I wasn't pregnant. So in the meantime, they ordered bloodwork to check if I was pregnant and they sent me for my echo. The echo was quick but by the time I got the neuro floor after, I saw the doctor coming to see me. "This can't be good".....
He sits me down and tells me the echo shows a massive benign atrial myxoma: A cardiac tumour. It is so large that as the heart beats, it plops down into the ventricle and then back up. A piece of the tumour had broken off and caused my stroke (and very likely caused my numb arm a month ago). So they were sending me to the CCU that night. "So I'm not going home?"
They needed to do the trans esophageal echo (TEE) to get a better look. I will just say that this was quite traumatic and I bit the doctor shoving the camera going down my throat.
In the CCU I met with the head of cardiac surgery at the hospital. He contemplated operating the following morning but my right hand was getting better daily and he wanted to give it one more day to heal because it would regress a bit with the surgery. I asked him how many of these surgeries he has done. He tells me "2 a year". So, as politely as I could, I asked if I would be better to go to a larger hospital where they have more experience. He was very kind and told me I was more than welcome to, but even large centers won't see these much - and if they do, each individual surgeon will only have done a handful a year as well. No matter how I looked at it, this was a rare surgery and I had to make a choice. Keith and I both felt good about this surgeon. He explained how it is removed and we had 36 hours to wait....
Those 36 hours flew by. Friends and family came to see me. I got special permission to have my kids come and see me in the CCU and I passed the day away as best I could. At night they did a lot of OR prep and Keith, being such a lovely husband, washed my hair in the sink because I couldn't do it for myself. At bedtime they gave me ativan and I slept well. In the morning, they gave me valium: as a result the next morning is nothing more than hints of memories: Me bartering with the surgeon to not use staples on my chest and to use 2 chest tubes instead of 4; saying bye to mom and Keith; dry heaving on the OR table.....and then waking up in excruciating pain.
I have to say that cardiac surgery is by far, the most painful thing I have ever experienced (And I'm including my back labour with non-functioning epidural). I have such respect and appreciation for Noah and his experiences now. There were days where I just wanted to die and would tell anyone who would listen. Even now, 8 days post-op, I can't begin to describe the excruciating rehabilitation that is involved.
I don't have clearly formed memories from the 5 days post-op in the hospital. Keith and Mom fill me in. Apparently when I woke up (after they extubated me) I informed my mom I was going to work on Monday. A while later I asked her if I was still pretty. I also apparently was clearly informed of my care: I told keith I was in Junctional rhythm and that my chest tube was only draining 65cc (I don't remember any of this). I do remember Keith feeding me ice chips, getting loaded up with pain meds and my mom and Nik coming to see me. Nik blowing up and popping a rubber glove which I swore stopped my heart.
It is hard knowing what it coming in your post-operative course, and having worked in cardiology I knew what was coming and I was dreading the removal of the chest tubes. They came out on day 1 post-op: oddly they felt good coming out because I couldn't breathe with them in. Pacing wires stayed in till the day I went home: I had a junctional rhythm so they liked keeping them in. Apparently the junctional rhythm is a result of inflammation from the surgery. The pacing wires hurt more than I expected them to. I had an arterial line, central line and IV in as well. I'm quite battered from those!
Keith was a constant figure at my side. He had taken the kids to school daily but he would come for visiting hours and stay as long as he could, even though I would doze or cry or go for tests. He would leave to pick the kids up and then come back after he put them to bed. He would make me tea, set out water for me at bedtime, he came and gave me my first shower post-op. He had mom's help at home but I know he shouldered a lot during this time. He lost his vacation time to be with me. This man really understands what it means to love "in sickness and in health".
On the day I was supposed to go home, I woke up vomiting. As a results my discharge got a bit delayed. Not sure why I was sick, but i was not thrilled given the last time I threw-up it was 1993. Yeah.....19 years ago. What a streak I had going!
Rehabilitation is long for cardiac surgery. I can't drive for 6 weeks, so I have to have someone here with me to take me to have my twice weekly blood work and my physio for my hand. The stroke complicates things and as such, I am very reliant on my family. The first day home I couldn't go up the stairs without feeling like I was short-of-breath, but a few days later I can do the stairs better. I am sleeping in a chair at night because to sleep on my back feels like being 9 months pregnant and sleeping on your back. Last night was the first time I showered alone. It is exhausting and took me forever, but loosing your independence is humbling and I was happy for some control back. I notice I can do more and more every day. I can't walk far yet but I am getting better for sure. Being healthy before surgery you don't really believe your body will take so long to heal, but it does and its frustrating!
Today I went to emerg because one of my chest tube sites is getting infected. Knowing the issues that can come from that, I decided it was best to just deal with it early. So now, I am on too many drugs to count (I actually got a pill box!): keflex for infection, coumadin and baby aspirin for clotting, iron for low hemoglobin, percocet and tylenol for pain, gravol for the queasies, enoxaparin injections....
I have no appetite, except for lasagna for some reason. It is the only thing I can stomach. Thank goodness we had some in the house.
So now, I have a long sternal incision from my throat to the base of my xyphoid process and two gaping chest tube holes underneath. I know these will fade but I have NO clothes that don't show the scar. I wish I was someone who could wear it proudly but I'm vain I suppose. I hate it. I look forward to when it fades away but will always wish it wasn't there.
I feel this experience should make me grateful for life and for being saved, because quite frankly, if not for the stroke I very well would have died one day soon. The tumour ended up being 7cm x 4cm. The heart isn't much bigger than that. However, I am mostly resentful. I know that sounds bad but look at the top of this blog: in the past 4 years we have had 3 open heart surgeries. We were finally planning a family vacation in August. We were feeling like our lives were turning around. Keith and I have been dealt a poor hand in health it seems and as much as I wish I could be an optimist or a positive person I will not lie. This sucked, I'm angry it happened. I am sad my husband has to take care of me and the kids because I can't. I am furious that someone feels we need to be punished in this way. I will say, however, that I am thankful to the nurses and doctors at the hospital. I am blessed that I had the brains to return to the OR to look into the stroke. I am very happy that the surgeon gave me my life back. Because when all is said and done I didn't want to die young and now hopefully I won't.
***
I went back to emerg: I was in atrial fibrillation and my heart rate was 178. It felt horrible - like my heart was beating out of my chest. They left me in emerg overnight outside the very loud nursing station. I fell asleep somewhere around 5am. At 7am I was woken by a doctor. Eventually they moved me back to the CCU telling me they would cardiovert me. I was in tears and had a big-time panic attack. I was not thrilled with the prospect of being shocked into normal rhythm. The nurses were kind and explained that I would be sedated. At 2pm they sedated me and tried but my baseline rhythm was an unstable junctional rhythm and I went back to atrial flutter. After that, they decided to load me up on amiodarone and try again in 24 hours. They gave me 2 boluses IV and oral. During the second bolus, my mom was kissing me to leave and my heart stopped for 5 seconds. I can't even begin to describe how awful that felt. Then it happened again. That, along with the unstable junctional rhythm meant I had to get a pacemaker. I was booked for 8am the next day.
Getting the pacemaker was a very traumatic and stressful ordeal. They draped my face with a cloth and put an O2 mask on. I am really claustrophobic so I had to ask them to take them off my face as much as they could. Then I could feel everything. They had to numb me 5 times. I also kept panicking and so they very heavily sedated me but it was never enough. I lay on the table sobbing, begging to sit up, and eventually asked Dave, the nurse I could see, to hold my hand. I was so scared. I didn't want a pacemaker and I was upset. I cried all the way back to my room and then for hours afterwards.
They decided to try cardioversion the next morning again and the doctor was positive it would work. When I woke I looked at the monitor: HR 60. Oh my goodness it worked!!! I cried and was so happy. They were even letting me go home that day! However, I couldnt sit up without being dizzy and my BP was very low (70/40). I started vomiting and asked them to set my pacemaker to 80. I have always had a fast heart rate and they agreed after and echo. That night, when my BP was up again (95/60) they let me go home. I should have stayed because I felt nervous being home but I have a pacemaker apptm in the morning tomorrow.
So that is the experience - it sucked. I wish it never happened. I will come to terms with it eventually. Just not now...
Tuesday, February 21, 2012
Do you have to parent children differently?
My children could not be more different in personality if they tried. Noah is ever patient, abnormally reasonable for his age and he is eager to please. It sounds like a dream but he comes with his own challenges in parenting, largely that he is so eager to please that if Layla is acting up he will start to get clingy and insist on being held or show me how good he is being (at the exact moment Layla is having a meltdown). Layla is a fireball of emotion: she is kind hearted and loving with a temper that would stop you in your tracks.
Raising Noah, we never had to discipline him (I am talking authoritative parenting). If you did happen to tell him to go to the corner, he would obey (he is eager to please, remember) and wouldn't leave until you told him to. This would NEVER work for Layla. You would put her in the corner, she would leave, you would put her back, she would leave. Over and over and over until ultimately, you would give up because she is very strong willed. She will win this argument. I have only tried once and I won't again. Besides, this authoritative parenting is not in line with our preferred Adlerian principles of parenting.
When we made the conscious decision to parent Noah via Adlerian parenting, we thought Alyson Schafer's book was heaven-sent and preached it to everyone who would listen. I honestly couldn't understand why parents were punishing their children! It isn't necessary....
....then Layla came into our lives. Her temper and sheer determination to succeed in everything she does has been evident from the moment she came out of the womb and refused to breast feed on my clock. She has her own agenda and she will be damned if she is going to do what others want of her. As she is approaching two, she is a very challenging person to raise. Do not get me wrong, she is not a mean child. She rarely hits people - but when she does swing her fist, it is at a wall out of sheer frustration. It has become a challenge and we have resorted to trying it all - even discipline (hence why I tried putting her in the corner).
I suggested to Keith a few weeks ago that perhaps we need to parent her differently. I was very upset because I have looked through a lot of parenting books and inevitably they come down to the principle of discipline ("you do what I say because I am the parent"). Which to me, is completely ridiculous! A child needs to know why they can/can't do something and they need set rules, (i.e. bedtime is always 7pm....therefore we never fight over going to bed).
When you break it down, Layla needs Adlerian parenting, as she is independent and wants to do everything Noah can do. She is 22 months and fully dresses herself, she is partially potty trained, and she gets in and out of her carseat on her own (easier in mommy's car, than daddy's). So for her to do something, she needs to know why we are doing it and she needs consistency. I have noticed, however, that choice overwhelms her - so for now, she doesn't get much choice in matters (ex. which shirt do you want to wear?)
A few days ago I was frustrated because she wants to do things on her own and has a nasty tantrum if she can't do them on her own. For example, she wants to get into her car seat in daddy's car but she is just too small to do so. But Keith couldn't get her into her car seat without using some force, as she would have a tantrum. She also wants to climb into the bathtub on her own, and lets face it - it just isn't safe. But if you do it for her, she cries and freaks out and won't cheer up for a lonnnngggg time.
In desperation I sent a tweet to Alyson Schafer this issue and she tweet back (I was beyond excited)! She suggested we act as a spotter, letting her do what she needs to do (the idea is that if a child is fighting a task, they are ready to take more responsibility with that task and it is our job as parents to facilitate that learning). however, she did suggest we let her fail (in a controlled scenario) as well so she learns the natural consequence of her actions.
This has saved a lot of fights. Keith got a little stool for his car to assist her and I spot her as she climbs into the tub. We also changed her crib into a toddler bed and we have had a great deal of success.
Some other things that have worked for us:
-"When/Then" statements: these are key with Layla. They provide structure in activities. For example, "When you have cleaned up your toy, then I will know you are ready to watch tv". She responds SO well to this. She doesn't freak out, she actually acts as though she finds this a totally acceptable statement and will carry on. This has been my personal lifesaver for diaper battles ("when you have your diaper on, then I will know you are ready to put your own pajamas on").
-Not demanding action: "Who wants to get in the car?!?!" rather than "We are going in the car now". This was Keith's suggestion and really helps get us out of the house in the morning.
-Offering help but not doing the job for her until she is ready: She likes to dress herself but lets face it, socks are a challenge! So I let her try and offer help (she will refuse) and wait till she comes to me for help. I don't have time for this one in the mornings, as we have only 20 min's to get out the door, so in that case, I dress her when she is just waking up and too tired to complain!
So Layla is tough at times, but I really believe this personality of hers will serve her well in all her endeavours in life, so I want to foster it, not squash it!
Raising Noah, we never had to discipline him (I am talking authoritative parenting). If you did happen to tell him to go to the corner, he would obey (he is eager to please, remember) and wouldn't leave until you told him to. This would NEVER work for Layla. You would put her in the corner, she would leave, you would put her back, she would leave. Over and over and over until ultimately, you would give up because she is very strong willed. She will win this argument. I have only tried once and I won't again. Besides, this authoritative parenting is not in line with our preferred Adlerian principles of parenting.
When we made the conscious decision to parent Noah via Adlerian parenting, we thought Alyson Schafer's book was heaven-sent and preached it to everyone who would listen. I honestly couldn't understand why parents were punishing their children! It isn't necessary....
....then Layla came into our lives. Her temper and sheer determination to succeed in everything she does has been evident from the moment she came out of the womb and refused to breast feed on my clock. She has her own agenda and she will be damned if she is going to do what others want of her. As she is approaching two, she is a very challenging person to raise. Do not get me wrong, she is not a mean child. She rarely hits people - but when she does swing her fist, it is at a wall out of sheer frustration. It has become a challenge and we have resorted to trying it all - even discipline (hence why I tried putting her in the corner).
I suggested to Keith a few weeks ago that perhaps we need to parent her differently. I was very upset because I have looked through a lot of parenting books and inevitably they come down to the principle of discipline ("you do what I say because I am the parent"). Which to me, is completely ridiculous! A child needs to know why they can/can't do something and they need set rules, (i.e. bedtime is always 7pm....therefore we never fight over going to bed).
When you break it down, Layla needs Adlerian parenting, as she is independent and wants to do everything Noah can do. She is 22 months and fully dresses herself, she is partially potty trained, and she gets in and out of her carseat on her own (easier in mommy's car, than daddy's). So for her to do something, she needs to know why we are doing it and she needs consistency. I have noticed, however, that choice overwhelms her - so for now, she doesn't get much choice in matters (ex. which shirt do you want to wear?)
A few days ago I was frustrated because she wants to do things on her own and has a nasty tantrum if she can't do them on her own. For example, she wants to get into her car seat in daddy's car but she is just too small to do so. But Keith couldn't get her into her car seat without using some force, as she would have a tantrum. She also wants to climb into the bathtub on her own, and lets face it - it just isn't safe. But if you do it for her, she cries and freaks out and won't cheer up for a lonnnngggg time.
In desperation I sent a tweet to Alyson Schafer this issue and she tweet back (I was beyond excited)! She suggested we act as a spotter, letting her do what she needs to do (the idea is that if a child is fighting a task, they are ready to take more responsibility with that task and it is our job as parents to facilitate that learning). however, she did suggest we let her fail (in a controlled scenario) as well so she learns the natural consequence of her actions.
This has saved a lot of fights. Keith got a little stool for his car to assist her and I spot her as she climbs into the tub. We also changed her crib into a toddler bed and we have had a great deal of success.
Some other things that have worked for us:
-"When/Then" statements: these are key with Layla. They provide structure in activities. For example, "When you have cleaned up your toy, then I will know you are ready to watch tv". She responds SO well to this. She doesn't freak out, she actually acts as though she finds this a totally acceptable statement and will carry on. This has been my personal lifesaver for diaper battles ("when you have your diaper on, then I will know you are ready to put your own pajamas on").
-Not demanding action: "Who wants to get in the car?!?!" rather than "We are going in the car now". This was Keith's suggestion and really helps get us out of the house in the morning.
-Offering help but not doing the job for her until she is ready: She likes to dress herself but lets face it, socks are a challenge! So I let her try and offer help (she will refuse) and wait till she comes to me for help. I don't have time for this one in the mornings, as we have only 20 min's to get out the door, so in that case, I dress her when she is just waking up and too tired to complain!
So Layla is tough at times, but I really believe this personality of hers will serve her well in all her endeavours in life, so I want to foster it, not squash it!
Wednesday, October 26, 2011
Adlerian principles for children
It is rare that we have a big discipline issue with our kids, specifically with Noah. He is, by nature, fair and "unreasonably reasonable" for a 3 year old. Since his surgery, we cut him a bit of slack and backed off our parenting a bit with him since he had enough going on. This was also recommended by our cardiac team as children tend to regress behaviourally during these tough times.
Recently, as he is clearly feeling better, we have gotten back into our parenting and it is being met with a bit of resistance. Keith and I try very hard to parent by the Adlerian principles touted by parenting expert, Alyson Schafer:
For example, one of Noah's biggest power struggles right now is getting back to dressing himself. The Alderian principle states Never do for a child what he can do for himself. So by that reasoning, he is very capable of putting on his own pants, underwear and socks. So in the morning we lay them out and ask him to get dressed. Sometimes, he is feeling he needs to be coddled a bit more so he will freak out and cry and scream for help. Now, we have no problem helping him with some of it....if he asks nicely. So we will reinforce that. I think that goes against this principle a bit but I have a hard time telling him I won't help him if he asks me nicely and respectfully.
The last week he has taken to screeching and screaming loudly when he is very upset or frustrated. It is in these moments that we have a hard time keeping our cool. I went to Alyson Schafer's new book for guidance: "Ain't Misbehavin'" as it has a section on tantrums. Tantrums come from a child locked in a power-struggle, meaning that ultimately, to stop these, we have to help him gain more control over his own choices. For example, I have noticed he wants to get his own spoon out of the drawer for his breakfast or help us make his breakfast...so those are small examples of how he is able to take more control. Yet, it is clear there is more control he needs to be given...so we need to find out where we can improve.
In the meantime, while a child is in mid-tantrum - the best thing to do is offer comfort if it is needed, but remove yourself (not banish them to a corner). I got the perfect chance this morning:
Noah and Layla were having breakfast and I asked them if they wanted an apple (they are apple-crazy lately and have one every morning on the ride into school and evening). They refused. We carried on and Noah was just heading to his carseat when he noticed he didn't have an apple. He wanted one and I had to remind him that he had said he didn't want one and we were now in the car. The time for choosing was over. He LOST it - screeching and screaming and getting right in my face and yelling. I calmly told him that when he was done screaming I would come into the car. I closed his door and waited outside of the car. He calmed down nearly instantly. I got in the car and while I should have left it at that, I felt the need to discuss why that voice was inappropriate and asked him to apologize. This is actually not in the parenting philosophy at all, which states: never teach children essential skills and habits in the heat of conflict. I also gave in and got an apple once he asked me nicely.
Again, wrong move....I almost got it right!
Recently, as he is clearly feeling better, we have gotten back into our parenting and it is being met with a bit of resistance. Keith and I try very hard to parent by the Adlerian principles touted by parenting expert, Alyson Schafer:
- Treat family members with mutual respect
- Utilize encouragement
- Highlight feelings of security for children
- Rewards and punishment are ineffective
- Natural consequences will serve as a teaching tool (i.e. you jump on the couch and fall - well that is what happens when you jump on the couch)
- Logical consequences are not arbitrary - they are direct and logical (i.e. If you don't want to join us at the table for dinner, that is ok - but this is the only dinner being served and when it is over, it's over)
- Don't interfere in children's fights (i.e. kids are arguing over a toy - they should learn to work it out themselves)
- Take the time to teach children essential skills and habits - not in the heat of a conflict
- Never do for a child what he can do for himself
- The four goals of misbehaviour: attention-seeking; power; revenge; assumed inadequacy
- Ensure family members are an equal voice in issues and finding a resolution
- Catch your child being good!
For example, one of Noah's biggest power struggles right now is getting back to dressing himself. The Alderian principle states Never do for a child what he can do for himself. So by that reasoning, he is very capable of putting on his own pants, underwear and socks. So in the morning we lay them out and ask him to get dressed. Sometimes, he is feeling he needs to be coddled a bit more so he will freak out and cry and scream for help. Now, we have no problem helping him with some of it....if he asks nicely. So we will reinforce that. I think that goes against this principle a bit but I have a hard time telling him I won't help him if he asks me nicely and respectfully.
The last week he has taken to screeching and screaming loudly when he is very upset or frustrated. It is in these moments that we have a hard time keeping our cool. I went to Alyson Schafer's new book for guidance: "Ain't Misbehavin'" as it has a section on tantrums. Tantrums come from a child locked in a power-struggle, meaning that ultimately, to stop these, we have to help him gain more control over his own choices. For example, I have noticed he wants to get his own spoon out of the drawer for his breakfast or help us make his breakfast...so those are small examples of how he is able to take more control. Yet, it is clear there is more control he needs to be given...so we need to find out where we can improve.
In the meantime, while a child is in mid-tantrum - the best thing to do is offer comfort if it is needed, but remove yourself (not banish them to a corner). I got the perfect chance this morning:
Noah and Layla were having breakfast and I asked them if they wanted an apple (they are apple-crazy lately and have one every morning on the ride into school and evening). They refused. We carried on and Noah was just heading to his carseat when he noticed he didn't have an apple. He wanted one and I had to remind him that he had said he didn't want one and we were now in the car. The time for choosing was over. He LOST it - screeching and screaming and getting right in my face and yelling. I calmly told him that when he was done screaming I would come into the car. I closed his door and waited outside of the car. He calmed down nearly instantly. I got in the car and while I should have left it at that, I felt the need to discuss why that voice was inappropriate and asked him to apologize. This is actually not in the parenting philosophy at all, which states: never teach children essential skills and habits in the heat of conflict. I also gave in and got an apple once he asked me nicely.
Again, wrong move....I almost got it right!
Tuesday, October 18, 2011
The development of speech
As Layla gets older (she is now 18 months), her tantrums are greatly reducing. We believe this is largely due to her speech development. She has quite a large range of words and is now putting together simple two-word sentences ("Hi daddy" or "Mine mommy" or "No thankyou").
Keith and I speak to the children properly. We don't use short forms or baby talk. Noah has been followed by a SLP since his infancy so we know how to speak to a child properly. That being said, it is strange how speech develops. Often, children come up with their own words for things. For example, Layla will often refer to her soother as a "soo". Clearly a shortform of the longer word we use for the pacifier. She will eventually master the full word, so this is the mid-point.
That said, where do they come up with some baby words?!?! For example, Layla refers to her baby blanket (and sometimes her soother) as her "nana". She isn't the first baby to refer to a lovey or soother with this word. My neice calls her soother a "nana" as well. I am not really sure where this came from - we still refer to her blanket and soother with the proper words (although I do find myself now asking her where her nana is). She clearly made up the word herself and labelled the objects consistently with this word. I find it very interesting. I would love to know the reasoning behind this.
She also has taken to using the word "No" a lot but refuses to say "yes". She does, however nod - which helps.
Another confusing aspect of speech development is her ability to say different names. To her, everyone is "Layla" (except mommy and daddy). Yet, if you ask her to give an object to a specific person, she will do it right, 100% of the time. At first I thought she was goofing around by calling Noah by her own name, but she has been doing this for months now!
Infant development is amazing. I find daycare fast tracks their development, especially when surrounded by older peers. Noah, for example, is learning french and both children are continually expanding their sign language skills. As fun as it is to watch them grow-up, I am always a bit sad when they learn to say a word properly. Noah used to refer to himself as "wo-wa" and I really miss that! But to see how clearly he can articulate his thoughts and feelings is amazing. Yet, you continually run into ways his speech is still limited by his age. For example, if he is mad he will say "I'm not feeling happy...I'm mad". It is a more roundabout way to say what he really means.
Of course, along with developed speech comes more complex reasoning and thus, resistance to parenting....but that is another post...
Keith and I speak to the children properly. We don't use short forms or baby talk. Noah has been followed by a SLP since his infancy so we know how to speak to a child properly. That being said, it is strange how speech develops. Often, children come up with their own words for things. For example, Layla will often refer to her soother as a "soo". Clearly a shortform of the longer word we use for the pacifier. She will eventually master the full word, so this is the mid-point.
That said, where do they come up with some baby words?!?! For example, Layla refers to her baby blanket (and sometimes her soother) as her "nana". She isn't the first baby to refer to a lovey or soother with this word. My neice calls her soother a "nana" as well. I am not really sure where this came from - we still refer to her blanket and soother with the proper words (although I do find myself now asking her where her nana is). She clearly made up the word herself and labelled the objects consistently with this word. I find it very interesting. I would love to know the reasoning behind this.
She also has taken to using the word "No" a lot but refuses to say "yes". She does, however nod - which helps.
Another confusing aspect of speech development is her ability to say different names. To her, everyone is "Layla" (except mommy and daddy). Yet, if you ask her to give an object to a specific person, she will do it right, 100% of the time. At first I thought she was goofing around by calling Noah by her own name, but she has been doing this for months now!
Infant development is amazing. I find daycare fast tracks their development, especially when surrounded by older peers. Noah, for example, is learning french and both children are continually expanding their sign language skills. As fun as it is to watch them grow-up, I am always a bit sad when they learn to say a word properly. Noah used to refer to himself as "wo-wa" and I really miss that! But to see how clearly he can articulate his thoughts and feelings is amazing. Yet, you continually run into ways his speech is still limited by his age. For example, if he is mad he will say "I'm not feeling happy...I'm mad". It is a more roundabout way to say what he really means.
Of course, along with developed speech comes more complex reasoning and thus, resistance to parenting....but that is another post...
Tuesday, August 30, 2011
Noah's operation
I thought I would share some of Noah's journey, since everyone has been so supportive and kind. It was a tough week - but we are very thankful for the doctors and nurses who cared for Noah. We can see a difference in him already and I finally feel that he will be ok. We have had a sense of dread hanging over us for the past three years - knowing he was walking around with a partially repaired heart. We were always waiting for the other shoe to drop. It is very hard to relax in that situation!
Tuesday August 23rd: The night before surgery
We had a hotel room booked, a 5 minute walk to the hospital. We had to be at the hospital for 6am and since we live an hour away, it was easier to just sleep 5 min's away. My mom had come to stay with Layla and I was worried about leaving her but she smiled and waved as we left the house. Pre-op, Noah couldn't eat past midnight, so we wanted to make sure he had a good dinner. Keith made a favourite meal of his and he sits down and pushes it away. Keith and I were terrified - Noah was booked for surgery at about 1pm the next day. If his last meal was lunch, rather than dinner....we were scared for the following day with a starving preschooler. Luckily Keith bought Boost (disgusting meal replacement beverage) and protein "chocolate bars". So on the ride down to the hotel Noah munched and drank. Not a lot but enough to keep us happy. We think he knew something was up and was just too nervous to eat.
Driving into Toronto was awesome - he was enthralled with the tall buildings and general bustle of the downtown core. I didn't really think our hometown was a "small town" but now that I see his reaction to Toronto, I suppose I have to face facts.
After a particularly stressful parking event which involved a very large Buick Enclave and a very tiny parking garage with minimal turning room, we arrived at our hotel which was just FILLED with children. I have never seen anything like it. They even had a check-in desk for kids where they get a toy and a book. Our room was nice with a king bed but we didn't have time to enjoy. We had to get Noah to have his bath with the special scrub brush for the OR and get him to bed! Sadly, the mixture of the strange bed and having his parents in the room with him made him wide awake! It was nearly 9:30pm before he fell asleep and hogged the bed for the rest of the night.
All too soon we were called to the operating room. We had to give him some medication to make him a bit loopy so he wouldn't be scared of going into the surgical suite alone. Keith carried him down and we got him to a bed just as the medication was kicking in. He kept insisting on holding James (his train from the Thomas set) but he also kept trying to watch an infomercial that was inexplicably playing in the holding area before the OR. I tried to recite his favourite bedtime stories but was way too teary to do so. He looked at me clearly at one point and I was trying so hard not to cry. I didn't want to scare him. Keith took over the story telling. After meeting the OR team, they wheeled him away (with James!). I can't tell you how terrifying it is to send off your seemingly healthy child into cardiac surgery where you know he will be on bypass. We were both very upset, but got it together after he was wheeled away and we settled into the waiting room for a long wait. We anticipated we would be seeing our surgeon around 1pm. It was now 8am.
Time passed and aside from being disgusted by the family beside us who felt that the table I had my coffee on was their personal foot stool (they had bare feet!), it went relatively quickly. Around 11 or 12 (i lost sense of time) I saw our surgeon. He brought us to the back room to tell us good and bad news. Good news: They cleared out MOST of the tissue that was blocking his outflow tract - there was some on the aortic valve that he couldn't get off without damaging the valve. His pressure gradient had gone from 120-150 down to 15. His valve no longer was leaky. He received no extra blood products (other than those needed for bypass) and he was extubated (this is a change from even his first surgery - they extubate in the OR which speeds up their discharge process by many days). Bad news: there is a tear in one of the leaflets of the aortic valve. He admitted that he thought he did it at first but upon examination saw the stress on the valve was too great and this tore it. He could have fixed it but it isn't leaking so he left it alone. This probably means another cardiac surgery down the road.....5 years or 40 years from now....we have no way to know.
The wait between knowing the surgery is over and going to see him is excruciatingly long. Luckily, we had a friend sitting with us to pass the time. Once we got to go in to see Noah, I was shocked by two things: 1) he was on no other medication other than morphine. For some reason I expected some sort of cardiac medication; 2) he looked like he did before he went into surgery. He was pink and not puffy or sick looking. he just looked like he was sleeping (minus the tubes, drains and IVs).
We were moved to a private room within minutes of seeing him because a sicker child needed his bed spot...so off we went to our own room with a nurse who was just fantastic. She really valued family-centered care and a few hours after surgery, helped Keith hold Noah, which really was amazing. As soon as he held him, his heart rate dropped and he seemed more stable.
As Noah became more and more conscious as we weaned morphine, he also became more and more hysterical. Not in a thrashing kind of way - he was just very weepy and easily set off by things. So, for example, if he didn't have his James train he would be very inconsolable. We knew we wouldn't be sleeping that night, so we chose to sleep in shifts. Keith went 9-2 and I went 2-7 back to the hotel to sleep. Since we didn't sleep the night before, we were exhausted. Sitting in a dark room with a lot of white noise is hard to stay awake in! Noah would wake on my shift and cry for his pillow or his daddy. It was very hard. Keith said his shift involved him sobbing for me and for his sippy cup. He was so thirsty but we didn't want to push it too much because the morphine made him feel ill.
Thursday August 25th: Post-op day 1
Getting through the night was ok, but getting through the next four hours until he was transferred to the cardiac ward was really tough. he remembered the train set on the ward and that is what he wanted. He wanted to get up to the unit and play. We endured hours of sobbing for that train set, or to go home, or to watch Curious George. It was very hard to see him so upset and not be able to explain properly why he had to be in pain and couldn't play.
Getting up to the cardiac ward around 11am, we got settled into our room and Noah fell asleep around 11:30. I went out to tell the nurse practitioner admitting him to take her time as he just fell asleep and she got very confused. You see, I used to work on this very unit, and talking to her like I normally would have as a nurse threw her for a loop. It took her some time to piece it together - very amusing! As Noah slept, Keith did the same and I played look-out to ensure Noah didn't roll onto his tummy or need anything.
Hours passed and he woke up a bit happier but still determined to see that train set. So, with the NP's permission, we unhooked him from the monitors and he walked all the way there! We expected the typical "old-man post-op shuffle": the hunched-over slow walk to the play room. But Noah just got up and marched to the room. He walked normally! Even the cardiologist was shocked at his abilities. I mean, he wasn't even one day post-op!
He looks less than thrilled, but he did well playing with the trains and then asking to do puzzles.
The challenge for the day was getting him to eat/drink. He wouldn't do either...can you blame him? Except with cardiac kids their fluid intake/output is very important so I drove him mad with insisting he drink to get him to pee. It was our ticket out of there!
Night was hard this night because his Tylenol and vital signs were staggered...so every 2 hours he was woken by the nurse for one of those things. Which meant, he called out to us and we would go lie with him. Noah seemed content though. At one point the nurse came in and he was just laying there awake and agreed to have his vitals done with no complaint. That is so very Noah....
He kept desating with his oxygen levels over night, so he did need a bit of oxygen. I had a hard time with this because I kept seeing it as a set back but thanks to the very lovely Lisa, the charge nurse that night, she assured me that being only one day post-operative, this most certainly wasn't a set-back- more of an expected outcome. We spent the following day blowing bubbles with him to get those oxygen sat's back up:
Friday August 26th - Post-op day 2
Noah was told he may be able to go home at rounds. This felt CRAZY fast to me. I worked on this unit 5 years prior and I don't think I ever discharged a child this fast. But, once his drains and pacing wired were removed there was no point in sticking around. This was a very busy day: drains/pacing wire removal, chest x-ray and an echo all needed to be done. He was still desaturating with sleep so we needed to figure out that as well.
We gave morphine before the tube got pulled and it was BAD. He got very very nauseated, sweaty and fidgety. He was feeling miserable and that was evident by him curled up into the fetal position moaning while I put cold cloths on his head and Keith rubbed his back and waited for him to be sick. I insisted they give an IV med to settle his stomach and they agreed. Just as they were about to pull the tube, the nurses listened to his chest and noticed he had decreased air entry to his right lower lung. So, we had to do an x-ray first to see if that chest tube could come out or not. All day Noah had been very lethargic and not himself: "Lack of affect" as we say in the health care world. So he went in a wheelchair and watched Toopy and Binoo on the iPad as he went down to x-ray - let them do their thing and came back up for an echo. He was so quiet and still the technician kept commenting on how good he was. Once the xray was back we found out there was some mild atelectasis in his right lobe and his lungs were a bit wet - so with a dose of lasix to pee off that fluid, they pulled the drain anyway. Sadly, we had to give more morphine - which bugged me but he still had the IV meds to keep the nausea at bay. This was a hard time because pulling chest tubes and pacing wires hurts like hell. He also needed his sternal dressing removed and his IV's taken out. So we did it all at once. He is a trooper though, and did quite well with it all.
Taking off the sternal dressing though, we thought we saw some pus - bad news - so we had to watch him overnight for a fever and had a doctor come and assess it. We had to redress it just to see if it would start oozing from an infection, however, no one thought it was infected (thank goodness) so we were able to plan to leave the following morning.
Because Noah was acting off all day, we had asked that we stay the night - and shortly after requesting this, he was acting normally and playful again. This coincided with a visit from his Uncle Nik. He loved Nik and finds him hilarious so that raised his spirits. My friend, Jen & Roula, also visited, as did both my sisters and their partners. It was nice to have people to visit with.
As Noah was falling asleep, he desat'ed to 86% so we were told to take him on another walk but I was afraid he would need oxygen over night again. For some reason, one more walk did it - and he was saturating 97% all night on his own!
Saturday August 27th: Home time!
Overnight Noah did great and we knew we were going home. It was a Saturday so things move slower in the hospital. We had to wait for our Nurse Practitioner to be free to discharge us and to get the OK from the doctor on daily rounds. It took until noon till we could go home. Yet to me, this was still very early post operatively. However, the reasoning was that he would probably do better at home and get up and move more to get rid of that atelectasis. To pass time, we watched the elevators - which at Sick Kids are fun to watch because they aren't in an elevator shaft - you can see them going up and down. He kept saying he didn't want to go home because of the elevators!
Around noon we packed up, took off his dressing and went home. Layla was soooo happy to see him. She kept waving and saying "hi" as she stared at him on the couch. Noah was happy to and shared his snack with her:
Tuesday August 23rd: The night before surgery
We had a hotel room booked, a 5 minute walk to the hospital. We had to be at the hospital for 6am and since we live an hour away, it was easier to just sleep 5 min's away. My mom had come to stay with Layla and I was worried about leaving her but she smiled and waved as we left the house. Pre-op, Noah couldn't eat past midnight, so we wanted to make sure he had a good dinner. Keith made a favourite meal of his and he sits down and pushes it away. Keith and I were terrified - Noah was booked for surgery at about 1pm the next day. If his last meal was lunch, rather than dinner....we were scared for the following day with a starving preschooler. Luckily Keith bought Boost (disgusting meal replacement beverage) and protein "chocolate bars". So on the ride down to the hotel Noah munched and drank. Not a lot but enough to keep us happy. We think he knew something was up and was just too nervous to eat.
Driving into Toronto was awesome - he was enthralled with the tall buildings and general bustle of the downtown core. I didn't really think our hometown was a "small town" but now that I see his reaction to Toronto, I suppose I have to face facts.
After a particularly stressful parking event which involved a very large Buick Enclave and a very tiny parking garage with minimal turning room, we arrived at our hotel which was just FILLED with children. I have never seen anything like it. They even had a check-in desk for kids where they get a toy and a book. Our room was nice with a king bed but we didn't have time to enjoy. We had to get Noah to have his bath with the special scrub brush for the OR and get him to bed! Sadly, the mixture of the strange bed and having his parents in the room with him made him wide awake! It was nearly 9:30pm before he fell asleep and hogged the bed for the rest of the night.
Wednesday August 24th: Surgery day
We left the hotel bright and early. Noah led the way with his Cars backpack filled with toys and us with a bag filled with games and toys to keep us occupied until the afternoon call for surgery. When we arrived on the floor we learned he had been moved to first case and another child had been cancelled. So we were taken to get Noah's vitals done, his weight and height and give him yet another bath. All of this went ok except when weighing him in the hall, another child (post-op) was walking and moaning down the hall past him and I think this scared him. I was never aware of this stuff when I worked as a nurse, but as a mom I was a bit angry that the weight wasn't done in his room so he wasn't scared of what was to come. Regardless, we got him weighed and then all he wanted to do was play with a train set in the playroom of the cardiac ward: 
All too soon we were called to the operating room. We had to give him some medication to make him a bit loopy so he wouldn't be scared of going into the surgical suite alone. Keith carried him down and we got him to a bed just as the medication was kicking in. He kept insisting on holding James (his train from the Thomas set) but he also kept trying to watch an infomercial that was inexplicably playing in the holding area before the OR. I tried to recite his favourite bedtime stories but was way too teary to do so. He looked at me clearly at one point and I was trying so hard not to cry. I didn't want to scare him. Keith took over the story telling. After meeting the OR team, they wheeled him away (with James!). I can't tell you how terrifying it is to send off your seemingly healthy child into cardiac surgery where you know he will be on bypass. We were both very upset, but got it together after he was wheeled away and we settled into the waiting room for a long wait. We anticipated we would be seeing our surgeon around 1pm. It was now 8am.
Time passed and aside from being disgusted by the family beside us who felt that the table I had my coffee on was their personal foot stool (they had bare feet!), it went relatively quickly. Around 11 or 12 (i lost sense of time) I saw our surgeon. He brought us to the back room to tell us good and bad news. Good news: They cleared out MOST of the tissue that was blocking his outflow tract - there was some on the aortic valve that he couldn't get off without damaging the valve. His pressure gradient had gone from 120-150 down to 15. His valve no longer was leaky. He received no extra blood products (other than those needed for bypass) and he was extubated (this is a change from even his first surgery - they extubate in the OR which speeds up their discharge process by many days). Bad news: there is a tear in one of the leaflets of the aortic valve. He admitted that he thought he did it at first but upon examination saw the stress on the valve was too great and this tore it. He could have fixed it but it isn't leaking so he left it alone. This probably means another cardiac surgery down the road.....5 years or 40 years from now....we have no way to know.
The wait between knowing the surgery is over and going to see him is excruciatingly long. Luckily, we had a friend sitting with us to pass the time. Once we got to go in to see Noah, I was shocked by two things: 1) he was on no other medication other than morphine. For some reason I expected some sort of cardiac medication; 2) he looked like he did before he went into surgery. He was pink and not puffy or sick looking. he just looked like he was sleeping (minus the tubes, drains and IVs).
We were moved to a private room within minutes of seeing him because a sicker child needed his bed spot...so off we went to our own room with a nurse who was just fantastic. She really valued family-centered care and a few hours after surgery, helped Keith hold Noah, which really was amazing. As soon as he held him, his heart rate dropped and he seemed more stable.
As Noah became more and more conscious as we weaned morphine, he also became more and more hysterical. Not in a thrashing kind of way - he was just very weepy and easily set off by things. So, for example, if he didn't have his James train he would be very inconsolable. We knew we wouldn't be sleeping that night, so we chose to sleep in shifts. Keith went 9-2 and I went 2-7 back to the hotel to sleep. Since we didn't sleep the night before, we were exhausted. Sitting in a dark room with a lot of white noise is hard to stay awake in! Noah would wake on my shift and cry for his pillow or his daddy. It was very hard. Keith said his shift involved him sobbing for me and for his sippy cup. He was so thirsty but we didn't want to push it too much because the morphine made him feel ill.
Thursday August 25th: Post-op day 1
Getting through the night was ok, but getting through the next four hours until he was transferred to the cardiac ward was really tough. he remembered the train set on the ward and that is what he wanted. He wanted to get up to the unit and play. We endured hours of sobbing for that train set, or to go home, or to watch Curious George. It was very hard to see him so upset and not be able to explain properly why he had to be in pain and couldn't play.
Getting up to the cardiac ward around 11am, we got settled into our room and Noah fell asleep around 11:30. I went out to tell the nurse practitioner admitting him to take her time as he just fell asleep and she got very confused. You see, I used to work on this very unit, and talking to her like I normally would have as a nurse threw her for a loop. It took her some time to piece it together - very amusing! As Noah slept, Keith did the same and I played look-out to ensure Noah didn't roll onto his tummy or need anything.
He looks less than thrilled, but he did well playing with the trains and then asking to do puzzles.
The challenge for the day was getting him to eat/drink. He wouldn't do either...can you blame him? Except with cardiac kids their fluid intake/output is very important so I drove him mad with insisting he drink to get him to pee. It was our ticket out of there!
Night was hard this night because his Tylenol and vital signs were staggered...so every 2 hours he was woken by the nurse for one of those things. Which meant, he called out to us and we would go lie with him. Noah seemed content though. At one point the nurse came in and he was just laying there awake and agreed to have his vitals done with no complaint. That is so very Noah....
He kept desating with his oxygen levels over night, so he did need a bit of oxygen. I had a hard time with this because I kept seeing it as a set back but thanks to the very lovely Lisa, the charge nurse that night, she assured me that being only one day post-operative, this most certainly wasn't a set-back- more of an expected outcome. We spent the following day blowing bubbles with him to get those oxygen sat's back up:
Friday August 26th - Post-op day 2
Noah was told he may be able to go home at rounds. This felt CRAZY fast to me. I worked on this unit 5 years prior and I don't think I ever discharged a child this fast. But, once his drains and pacing wired were removed there was no point in sticking around. This was a very busy day: drains/pacing wire removal, chest x-ray and an echo all needed to be done. He was still desaturating with sleep so we needed to figure out that as well.
We gave morphine before the tube got pulled and it was BAD. He got very very nauseated, sweaty and fidgety. He was feeling miserable and that was evident by him curled up into the fetal position moaning while I put cold cloths on his head and Keith rubbed his back and waited for him to be sick. I insisted they give an IV med to settle his stomach and they agreed. Just as they were about to pull the tube, the nurses listened to his chest and noticed he had decreased air entry to his right lower lung. So, we had to do an x-ray first to see if that chest tube could come out or not. All day Noah had been very lethargic and not himself: "Lack of affect" as we say in the health care world. So he went in a wheelchair and watched Toopy and Binoo on the iPad as he went down to x-ray - let them do their thing and came back up for an echo. He was so quiet and still the technician kept commenting on how good he was. Once the xray was back we found out there was some mild atelectasis in his right lobe and his lungs were a bit wet - so with a dose of lasix to pee off that fluid, they pulled the drain anyway. Sadly, we had to give more morphine - which bugged me but he still had the IV meds to keep the nausea at bay. This was a hard time because pulling chest tubes and pacing wires hurts like hell. He also needed his sternal dressing removed and his IV's taken out. So we did it all at once. He is a trooper though, and did quite well with it all.
Taking off the sternal dressing though, we thought we saw some pus - bad news - so we had to watch him overnight for a fever and had a doctor come and assess it. We had to redress it just to see if it would start oozing from an infection, however, no one thought it was infected (thank goodness) so we were able to plan to leave the following morning.
Because Noah was acting off all day, we had asked that we stay the night - and shortly after requesting this, he was acting normally and playful again. This coincided with a visit from his Uncle Nik. He loved Nik and finds him hilarious so that raised his spirits. My friend, Jen & Roula, also visited, as did both my sisters and their partners. It was nice to have people to visit with.
As Noah was falling asleep, he desat'ed to 86% so we were told to take him on another walk but I was afraid he would need oxygen over night again. For some reason, one more walk did it - and he was saturating 97% all night on his own!
Saturday August 27th: Home time!
Overnight Noah did great and we knew we were going home. It was a Saturday so things move slower in the hospital. We had to wait for our Nurse Practitioner to be free to discharge us and to get the OK from the doctor on daily rounds. It took until noon till we could go home. Yet to me, this was still very early post operatively. However, the reasoning was that he would probably do better at home and get up and move more to get rid of that atelectasis. To pass time, we watched the elevators - which at Sick Kids are fun to watch because they aren't in an elevator shaft - you can see them going up and down. He kept saying he didn't want to go home because of the elevators!
Around noon we packed up, took off his dressing and went home. Layla was soooo happy to see him. She kept waving and saying "hi" as she stared at him on the couch. Noah was happy to and shared his snack with her:
Every day Noah is getting better and better. We learned quickly that we have to stay on top of his pain meds - advil and tylenol...that's all he gets! He must feel great because he keeps doing more (physically) than he should be doing - and then he pays for it around bedtime when he gets upset with the pain. But overall I think we are both shocked at his resilience.
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