Somehow I knew, when Dr. Lau (cardiologist) told me this morning that he'd be sending the referral to Dr. Kirklin (surgeon) and they'd be calling me in "a couple of days" to schedule the surgery, that it'd be sooner than a couple of days. I was right, four hours after we got home Dr. Kirklin's office called, and five minutes after that we had the surgery scheduled.
April 24th.
Now, you have to understand that I have severely mixed emotions about this.
On the one hand, we started on this journey on January 13th, when her pediatrician heard the heart murmur and decided to send us to the cardiologist. It's been a bumpy road, emotionally exhausting, but we've known for a while that it would probably come down to this, with absolute certainty for the last two weeks. Since this is such an overwhelming event, and stress and worry are our constant companions, and the day it was decided we would have to face this I've wanted nothing more than to get it over with, move on with our lives, heal, recover, go to Disney World.
On the other, as a mother, sending my baby into the operating room is something to dread, and dread hard. I know as well as anyone that anytime someone is having surgery, going under anesthesia, there is always a risk that they won't make it through and that this risk is minimal for this surgery. But there's still a risk, and any is too much for a mother. It'll be worth it. She will feel better. She will be able to be more active, and there will be less risk *afterwards* of life threatening complications. It's worth it... oh yes, it is, but still.
I'm okay if I don't think too hard about it, and I've become something of an expert at relaying the facts in a clinical manner since going through what we did with Mom. I can tell you what's going to happen, what's going to be done to Ally, but if I really think about what I'm saying, I'm a mess.
In that vein, I know how difficult it is for many people to feel comfortable asking questions, but don't worry. I don't mind, not at all.
Here's what's going to go down:
In the afternoon of Monday, April 23rd, we'll go in to meet Dr. Kirklin, who will check Ally out and then send us to the clinic for bloodwork and x-ray. This is just precautionary to make sure she's not sick.
Tuesday, April 24th, we check into the hospital at 5AM and get registered. The doctor will speak to us again before surgery, and we can stay with Ally until she's taken to the OR (I do NOT know yet if she'll be sedated before they take her away). The surgery will last roughly six hours.
The procedure is called a septal myomectomy, where they will cut into her chest and through her breast bone, then remove part of her heart muscle that is blocking the left ventricle. The heart has to be stopped during this time, so she'll be put on a heart/lung machine to keep her blood moving and oxygenated. The surgery doesn't actually take all that long, I think Dr. Lau said that a couple of hours is getting her back off the heart/lung machine.
During this time they will also implant the ICD, which will be programmed to watch for certain patterns, abnormal heart rhythms, and be ready to shock it back if it stops. It'll be implanted in her abdomen and the leads will run up under her ribs to her heart to help protect them from damage.
After she is out of surgery, she'll be transferred to the CICU for 24 hours. We can stay with her there, though we can't sleep there (I foresee an all-nighter). After that, she'll be moved to the pediatric floor with a private room. Optimistically, we should be able to go home on the weekend. 5-7 days is the prediction, so that's between Saturday and Monday.
Dr. Lau says she will probably be running around driving us crazy within two weeks of surgery because kids are ridiculously resilient, but we will have to keep her home for five weeks to avoid exposing her to germs. A cold or flu wouldn't necessarily be any more dangerous to her than usual, but any fever that soon after surgery has to be treated as a possible infection and she would have to be hospitalized as a precaution. No good!
So see? I can be clinical and tell you what's going to happen.
If I start to think about it, however, what you'd be getting is something more along these lines:
dhso;giuarh2'J3QR
-FEH0IUF;OINVKLJDFOPJGFSD
hsgo;foajposwke
... yeah, nobody wants that.
Thursday, March 29, 2012
Tuesday, March 27, 2012
Tender Hearts
One of the things I've had a little trouble accepting since Ally's diagnosis is the fact that she will never be able to play sports.
When I was growing up, I harbored an intense desire to do gymnastics. Never ballet, never sports, but I wanted to be a gymnast so bad I couldn't stand it. It took becoming an adult and really examining the situation our family was in for me to understand why it wasn't possible. My mom was a single mother with three kids in private school and the funds just weren't there. By the time our situation had changed, she looked into it but was told I was "too old to start". I don't have any resentment for it now, but I admit I had every intention of living vicariously through my daughter, a dream only encouraged by her physical stature. She is short and compact and I merely choose to overlook her klutziness (kid can't walk through air without tripping). Gymnastics, sign her up!
Ten years ago this fall I started working for a wonderful family as a full-time nanny. The kids were 3 and 4 when I started, and I have to tell you, taking those stinking adorable kids to soccer practice and games, I made up my mind that I couldn't wait for my child to be playing. Have you ever watched four-year-olds play soccer? It might just be the cutest, funniest thing in the world. With their little jerseys and shin guards and cleats?? Soccer, sign her up!
Well, not anymore. This is such a minimal disappointment that it doesn't even warrant worrying. There are plenty of other things to do in life, and I don't feel at all deprived because I didn't play sports or get to do gymnastics as a child. Still, it was just another thing in a long list of them, the words "life altering" are not an exaggeration. Unless she one day needs and receives a heart transplant or a cure is discovered, HCM will be a part of Ally's life and will dictate what she can and cannot do.
Recently, the 9-year-old son of a friend of mine, decided he didn't want to sign up for soccer this spring. We were on the phone while he said this, and she was having no luck convincing him to do it willingly, so I said "Why don't you tell him he should play soccer since Ally can't?"
(Wow... where did my ability to lay on a guilt trip come from?)
I didn't actually intend for her to do it, but she is one of those people that I very well know you should never ask to do something if you don't really want her to do it.
I listened while she asked him if he remembered her telling him about Ally, her heart, and how she wouldn't be able to play sports. I listened while she asked him if he could maybe play soccer on Ally's behalf this year, and at the end of the season, maybe send Ally his trophy.
She said he got teary eyed when he said he would, which is a fairly accurate if understated assessment of what I was going through on the other end of the line.
This little 9-year-old boy, who has never even met Ally, signed up to play soccer for her, because she can't.
If that doesn't get to you, well... I just don't know about you.
When I was growing up, I harbored an intense desire to do gymnastics. Never ballet, never sports, but I wanted to be a gymnast so bad I couldn't stand it. It took becoming an adult and really examining the situation our family was in for me to understand why it wasn't possible. My mom was a single mother with three kids in private school and the funds just weren't there. By the time our situation had changed, she looked into it but was told I was "too old to start". I don't have any resentment for it now, but I admit I had every intention of living vicariously through my daughter, a dream only encouraged by her physical stature. She is short and compact and I merely choose to overlook her klutziness (kid can't walk through air without tripping). Gymnastics, sign her up!
Ten years ago this fall I started working for a wonderful family as a full-time nanny. The kids were 3 and 4 when I started, and I have to tell you, taking those stinking adorable kids to soccer practice and games, I made up my mind that I couldn't wait for my child to be playing. Have you ever watched four-year-olds play soccer? It might just be the cutest, funniest thing in the world. With their little jerseys and shin guards and cleats?? Soccer, sign her up!
Well, not anymore. This is such a minimal disappointment that it doesn't even warrant worrying. There are plenty of other things to do in life, and I don't feel at all deprived because I didn't play sports or get to do gymnastics as a child. Still, it was just another thing in a long list of them, the words "life altering" are not an exaggeration. Unless she one day needs and receives a heart transplant or a cure is discovered, HCM will be a part of Ally's life and will dictate what she can and cannot do.
Recently, the 9-year-old son of a friend of mine, decided he didn't want to sign up for soccer this spring. We were on the phone while he said this, and she was having no luck convincing him to do it willingly, so I said "Why don't you tell him he should play soccer since Ally can't?"
(Wow... where did my ability to lay on a guilt trip come from?)
I didn't actually intend for her to do it, but she is one of those people that I very well know you should never ask to do something if you don't really want her to do it.
I listened while she asked him if he remembered her telling him about Ally, her heart, and how she wouldn't be able to play sports. I listened while she asked him if he could maybe play soccer on Ally's behalf this year, and at the end of the season, maybe send Ally his trophy.
She said he got teary eyed when he said he would, which is a fairly accurate if understated assessment of what I was going through on the other end of the line.
This little 9-year-old boy, who has never even met Ally, signed up to play soccer for her, because she can't.
If that doesn't get to you, well... I just don't know about you.
Monday, March 26, 2012
Decisions
I am 31 years old.
I started my first job as a nanny when I was 18 years old, and ever since then I've worked with children, whether as a nanny full time or part time, caregiver to a child in my home, or my job now, working in a church nursery.
I've been married for seven years next month. My daughter turned four in November. I have a job and a mortgage and two cars and a privacy fence. I'm a grown-up, right?
My mother passed away four years ago in May, when Ally was six months old. We were very close and she fought a very long battle against cancer. Losing her was, without question, the most difficult thing I had ever experienced, and in spite of the hundreds of times I was told it would get easier with time, I'm finding that not to be the case, because I am just a big baby. I am a momma's girl, and whenever things are hard or whenever they're good, whenever Ally does something really smart or says something funny or has a really, really bad checkup that leads to open heart surgery, my head is always screaming "I WANT MY MOMMY!"
So being a grown-up means that the decisions are on me. In this case, of course, I have a shared burden with my husband. When it comes to decisions about Ally, the buck stops here. We're the final word.
For someone who is constantly in a mental temper tantrum over being motherless, it maybe should be cause for concern that I have so much authority. Did I mention that making decisions has never, ever been my forte? Just ask my mom.
So the diagnosis comes down the pike and all the brainiac doctors reach the same conclusion: Ally needs surgery, and she needs it soon. We need to go in and make it so her heart can function a little easier, a little more like it's supposed to, and we also need to install an electronic device so that if her heart doesn't do what it's supposed to and stops, it can save her.
Now, the big question: WHERE?
There are three places in North America with cardiologists who specialize in HCM. If Ally were 16 or 25 or 50 and needed this surgery, we'd be packing it up and driving to Cleveland to have her heart operated on. The adult CV Surgeon at the Cleveland Clinic is arguably one of the best in the world for dealing with this very same problem. It would almost be a no-brainer.
The problem is that Ally is four, and her heart is much, much smaller than an adult's. The surgery is much more complicated because of that, and that muddies the water quite a bit on who might be absolutely 100% the best to do her surgery. We're blessed to have UAB so close, with so many smart people, but the decision about where to take her is just not black and white at all.
Aforementioned genius HCM surgeon would be in the operating room with the pediatric surgeon if we chose Cleveland... that's an appealing level of expertise.
But there's a list a mile and three quarters long of upsides for UAB, too. Just to name a few:
It's such a tremendous burden to make the right decision when you could certainly consider it life or death for your child. We have some truly amazing people in our lives who we know, without a doubt, are there to support us, offer us advice if we ask for it and an ear if we just need to talk. Personally I would not have a shred of sanity left if it weren't for these people, but it ripples out so much farther than just people we are in immediate contact with. I've been sending out email updates since this whole thing started, and I get messages forwarded back to me by my family and friends, notes from people I don't even know saying that they are praying for us and for Ally, and I can't even tell you how much that means to me.
Why? Because I can't make this decision on my own. I'm just a child myself sometimes. I'm not capable of handling this on my own.
It's easier said than done... even though I can hear her voice in my head, I'm not Mom. But I am trying, and the prayers of all these people, the ones I know and the ones I don't, make a big difference. When I asked for prayers for wisdom so that we could make the best decision possible for Ally, people have been responding in spades.
Maybe there isn't a clear cut sign, flashing neon billboards with arrows pointing at the right choice. No message from God written plain as day in the clouds. Really, how great would that be? But that's not exactly how God operates. He speaks to your heart.
Right now, my heart is telling me we need to stay close to home for this. Maybe the overwhelming personal, selfish need I feel to have the people I love within easy reach if something goes wrong, or even if nothing goes wrong, is God's flashing neon sign. Maybe it's not weakness, but the message in the clouds.
Thursday morning, we're meeting with Dr. Lau again to get questions answered hopefully to the extent that both our hearts are at peace with the decision to stay in Birmingham, and from there, we move forward.
I started my first job as a nanny when I was 18 years old, and ever since then I've worked with children, whether as a nanny full time or part time, caregiver to a child in my home, or my job now, working in a church nursery.
I've been married for seven years next month. My daughter turned four in November. I have a job and a mortgage and two cars and a privacy fence. I'm a grown-up, right?
My mother passed away four years ago in May, when Ally was six months old. We were very close and she fought a very long battle against cancer. Losing her was, without question, the most difficult thing I had ever experienced, and in spite of the hundreds of times I was told it would get easier with time, I'm finding that not to be the case, because I am just a big baby. I am a momma's girl, and whenever things are hard or whenever they're good, whenever Ally does something really smart or says something funny or has a really, really bad checkup that leads to open heart surgery, my head is always screaming "I WANT MY MOMMY!"
So being a grown-up means that the decisions are on me. In this case, of course, I have a shared burden with my husband. When it comes to decisions about Ally, the buck stops here. We're the final word.
For someone who is constantly in a mental temper tantrum over being motherless, it maybe should be cause for concern that I have so much authority. Did I mention that making decisions has never, ever been my forte? Just ask my mom.
So the diagnosis comes down the pike and all the brainiac doctors reach the same conclusion: Ally needs surgery, and she needs it soon. We need to go in and make it so her heart can function a little easier, a little more like it's supposed to, and we also need to install an electronic device so that if her heart doesn't do what it's supposed to and stops, it can save her.
Now, the big question: WHERE?
There are three places in North America with cardiologists who specialize in HCM. If Ally were 16 or 25 or 50 and needed this surgery, we'd be packing it up and driving to Cleveland to have her heart operated on. The adult CV Surgeon at the Cleveland Clinic is arguably one of the best in the world for dealing with this very same problem. It would almost be a no-brainer.
The problem is that Ally is four, and her heart is much, much smaller than an adult's. The surgery is much more complicated because of that, and that muddies the water quite a bit on who might be absolutely 100% the best to do her surgery. We're blessed to have UAB so close, with so many smart people, but the decision about where to take her is just not black and white at all.
Aforementioned genius HCM surgeon would be in the operating room with the pediatric surgeon if we chose Cleveland... that's an appealing level of expertise.
But there's a list a mile and three quarters long of upsides for UAB, too. Just to name a few:
- It's close to home. She has surgery and is in the hospital for a week, we get in the car and we're home in 90 minutes, versus 12 hours from Cleveland.
- My family and friends, with a handful of (important!) exceptions, are in or near Birmingham. It's where I grew up. Never underestimate the value of your support system, although you might because your support system is just not as good as mine. Sorry, it's the truth.
- Insurance is something not to be toyed with. Finding out if Dr. Zahka in Cleveland was covered for us to see him for a second opinion was a nightmare for me. Getting every single doctor she might come in contact with cleared through our insurance is not something I want to be focusing on under the circumstances. The money may not matter in the big picture, but this is not a nose job we're talking about. I would much rather know what's coming at me financially than just hope for the best.
- Dr. Kirklin is the surgeon at UAB. If you live in Birmingham, you will recognize this name. Half the city is named after his father. There's a reason for that, and a reason he's the head of the department.
It's such a tremendous burden to make the right decision when you could certainly consider it life or death for your child. We have some truly amazing people in our lives who we know, without a doubt, are there to support us, offer us advice if we ask for it and an ear if we just need to talk. Personally I would not have a shred of sanity left if it weren't for these people, but it ripples out so much farther than just people we are in immediate contact with. I've been sending out email updates since this whole thing started, and I get messages forwarded back to me by my family and friends, notes from people I don't even know saying that they are praying for us and for Ally, and I can't even tell you how much that means to me.
Why? Because I can't make this decision on my own. I'm just a child myself sometimes. I'm not capable of handling this on my own.
It's easier said than done... even though I can hear her voice in my head, I'm not Mom. But I am trying, and the prayers of all these people, the ones I know and the ones I don't, make a big difference. When I asked for prayers for wisdom so that we could make the best decision possible for Ally, people have been responding in spades.
Maybe there isn't a clear cut sign, flashing neon billboards with arrows pointing at the right choice. No message from God written plain as day in the clouds. Really, how great would that be? But that's not exactly how God operates. He speaks to your heart.
Right now, my heart is telling me we need to stay close to home for this. Maybe the overwhelming personal, selfish need I feel to have the people I love within easy reach if something goes wrong, or even if nothing goes wrong, is God's flashing neon sign. Maybe it's not weakness, but the message in the clouds.
Thursday morning, we're meeting with Dr. Lau again to get questions answered hopefully to the extent that both our hearts are at peace with the decision to stay in Birmingham, and from there, we move forward.
Broken Heart
It wasn't eight months ago that my husband and I were talking about how lucky we have been with our daughter, Ally.
Don't get me wrong - I'm not changing that position now, but it seems as if I should've knocked on some wood when the conversation happened. At four years old, I could count on one hand the number of sick visits Ally has taken to the doctor. She didn't have her first one until seventeen months old when she suddenly developed an ear infection, and even after that very first sick child visit, there were very few more. I personally felt, and her pediatrician agreed with me, that this could very easily be attributed to extended breast feeding (she was over 2 before we stopped) and also that I was blessed enough to stay home with her and take her to work with me rather than having to drop her off at the Germ Festival (aka daycare) every day.
What sparked this conversation between Al and me is that at age 3 1/2, Ally started crossing her right eye, and at first we thought she was doing it on purpose. Months went by and she didn't stop, in fact it started getting more and more noticeable and frequent. At one of her rare sick visits to Dr. Ellis, we asked about it, and he sent us to see an ophthalmologist. I admit to taking it harder than I should have when we were told she needed glasses. No big deal, in retrospect, but my previously Picture Of Health daughter suddenly needed something she wouldn't understand. After patching her "good" eye for three months, her eyes are now about even with a +4.50 prescription lens. She loves her glasses... they're purple.
A month after her follow up appointment with the ophthalmologist, we returned to Dr. Ellis for her four-year-old checkup. Totally routine... she's healthy and happy and (finally!) potty trained. Until he notices a heart murmur.
"It's probably nothing," He said, and before we had her shoes back on, we had an appointment with a pediatric cardiologist for an echo.
Somehow, when a doctor tells you "it's probably nothing" but he's referring to an imperfection in your baby's vital organ, it's not so easy, for me at least, to believe that it's probably nothing. It's not something I'm proud of, this tendency to fear the worst, but there it is, my greatest weakness. Where Ally is concerned, it has always been nothing, or almost nothing, for over four years, but still I worried.
Four days later we sat in a pediatric cardiologist's office while the doctor sent her out of the room and told us to stay put.
"It's not nothing," He said.
Hypertrophic Cardiomyopathy is a congenital heart defect in which the heart muscle grows too thick and can't efficiently pump blood. In Ally specifically, there is significant blockage of the left ventricle, and her heart must work too hard to get her blood where it needs to go.
Obviously neither of us knew anything about this disease, but we knew enough by the time we walked out of there to be devastated. Her entire life will be affected, she can't participate in sports or strenuous exercise of any kind. It doesn't get better, it does get worse. She will need surgery. Most alarming, we were informed, is that when you hear of otherwise perfectly healthy kids falling out on a sports field with sudden death, it is usually this disease. A silent and very serious killer that often exhibits no symptoms before sudden death occurs. We are lucky to have found out about it.
The doctor sent us on our way and told us to come back in six months, or call him if she started showing symptoms.
That lasted for about twelve hours, at which point we decided that with UAB and world-renowned heart doctors a hundred miles away, it was beyond stupid not to get a second opinion.
My sister-in-law's mother, Robbie, is a cardiac nurse at UAB, so the next day I spoke with her, asked her who to see, and a week later we were in Dr. Lau's office.
It's not what you know, it's who you know, they say.
Dr. Lau did another echo, and an EKG, and put Ally on a Holter monitor for a 24 hour period. In a case such as hers, he said, he needed to consult with his colleagues. She's very, very young to have such a severe manifestation of this disease. It typically does not show up until puberty, so the fact that she has it so bad now is unsettling. At the same time, performing open heart surgery on a four year old is nothing to go into lightly, either.
Dr. Lau promised he would call me once the results of the Holter were in. When they were, he did, and it wasn't good news. They felt that we should seriously consider surgery sooner rather than later.
It's a sickening feeling that doesn't really go away. Every time I think about it, about what that entails, I lose a little bit of nerve, get a little queasy, a little shaky. That's my baby they're talking about cutting open. Something essential to her survival that they want to operate on.
I needed reassurance from someone who could be both informed and objective, and after a phone call to Ally's pediatrician, Dr. Ellis, we made up our mind to get a third opinion, from a specialist in this condition, a decision which had the full support of every doctor we spoke to. HCM is rare enough that specialists are relatively hard to find, but with family in Ohio we decided the best place to go would be the Cleveland Clinic, to see Dr. Zahka.
Dr. Zahka requested extensive bloodwork...bloodwork arrived in advance, the MRI disk rode to Ohio with us.
Dr. Zahka answered a lot of questions for us, reiterating what the others had said about her case being severe. Surgery would be necessary within a year, most likely, and unfortunately a year does not reduce the level of complexity with this surgery. Ten years would make a difference, but there's no way she'll go that long without surgery. He assures us he will review the MRI and the echo with other doctors in Cleveland, and will call us once he's done so.
Five days later, Dr. Zahka is telling me that it needs to be within six months now. There's no benefit to waiting, and even though he'd originally been of the opinion that an ICD (implantable cardioverter defibrillator) wasn't a good idea, he'd changed his mind about that, too.
Knowing that so many brilliant minds, both in Birmingham and Cleveland, have been talking, thinking, consulting about Ally is both comforting - under the circumstances - and upsetting, because the circumstances warrant so much attention. There's no doubt about it, her little heart is not in good shape. It's bad enough that while they do not usually want to perform such a serious surgery on such a small child, in her case not doing surgery is the riskier option.
It's heavy stuff. Hard for a parent, considering either path, knowing the risks involved.
My sweet, tender hearted, stubborn, smart, funny, silly girl. If I could trade places with her, I would. In a heartbeat.
Don't get me wrong - I'm not changing that position now, but it seems as if I should've knocked on some wood when the conversation happened. At four years old, I could count on one hand the number of sick visits Ally has taken to the doctor. She didn't have her first one until seventeen months old when she suddenly developed an ear infection, and even after that very first sick child visit, there were very few more. I personally felt, and her pediatrician agreed with me, that this could very easily be attributed to extended breast feeding (she was over 2 before we stopped) and also that I was blessed enough to stay home with her and take her to work with me rather than having to drop her off at the Germ Festival (aka daycare) every day.
What sparked this conversation between Al and me is that at age 3 1/2, Ally started crossing her right eye, and at first we thought she was doing it on purpose. Months went by and she didn't stop, in fact it started getting more and more noticeable and frequent. At one of her rare sick visits to Dr. Ellis, we asked about it, and he sent us to see an ophthalmologist. I admit to taking it harder than I should have when we were told she needed glasses. No big deal, in retrospect, but my previously Picture Of Health daughter suddenly needed something she wouldn't understand. After patching her "good" eye for three months, her eyes are now about even with a +4.50 prescription lens. She loves her glasses... they're purple.
A month after her follow up appointment with the ophthalmologist, we returned to Dr. Ellis for her four-year-old checkup. Totally routine... she's healthy and happy and (finally!) potty trained. Until he notices a heart murmur.
"It's probably nothing," He said, and before we had her shoes back on, we had an appointment with a pediatric cardiologist for an echo.
Somehow, when a doctor tells you "it's probably nothing" but he's referring to an imperfection in your baby's vital organ, it's not so easy, for me at least, to believe that it's probably nothing. It's not something I'm proud of, this tendency to fear the worst, but there it is, my greatest weakness. Where Ally is concerned, it has always been nothing, or almost nothing, for over four years, but still I worried.
Four days later we sat in a pediatric cardiologist's office while the doctor sent her out of the room and told us to stay put.
"It's not nothing," He said.
Hypertrophic Cardiomyopathy is a congenital heart defect in which the heart muscle grows too thick and can't efficiently pump blood. In Ally specifically, there is significant blockage of the left ventricle, and her heart must work too hard to get her blood where it needs to go.
Obviously neither of us knew anything about this disease, but we knew enough by the time we walked out of there to be devastated. Her entire life will be affected, she can't participate in sports or strenuous exercise of any kind. It doesn't get better, it does get worse. She will need surgery. Most alarming, we were informed, is that when you hear of otherwise perfectly healthy kids falling out on a sports field with sudden death, it is usually this disease. A silent and very serious killer that often exhibits no symptoms before sudden death occurs. We are lucky to have found out about it.
The doctor sent us on our way and told us to come back in six months, or call him if she started showing symptoms.
That lasted for about twelve hours, at which point we decided that with UAB and world-renowned heart doctors a hundred miles away, it was beyond stupid not to get a second opinion.
My sister-in-law's mother, Robbie, is a cardiac nurse at UAB, so the next day I spoke with her, asked her who to see, and a week later we were in Dr. Lau's office.
It's not what you know, it's who you know, they say.
Dr. Lau did another echo, and an EKG, and put Ally on a Holter monitor for a 24 hour period. In a case such as hers, he said, he needed to consult with his colleagues. She's very, very young to have such a severe manifestation of this disease. It typically does not show up until puberty, so the fact that she has it so bad now is unsettling. At the same time, performing open heart surgery on a four year old is nothing to go into lightly, either.
Dr. Lau promised he would call me once the results of the Holter were in. When they were, he did, and it wasn't good news. They felt that we should seriously consider surgery sooner rather than later.
It's a sickening feeling that doesn't really go away. Every time I think about it, about what that entails, I lose a little bit of nerve, get a little queasy, a little shaky. That's my baby they're talking about cutting open. Something essential to her survival that they want to operate on.
I needed reassurance from someone who could be both informed and objective, and after a phone call to Ally's pediatrician, Dr. Ellis, we made up our mind to get a third opinion, from a specialist in this condition, a decision which had the full support of every doctor we spoke to. HCM is rare enough that specialists are relatively hard to find, but with family in Ohio we decided the best place to go would be the Cleveland Clinic, to see Dr. Zahka.
Dr. Zahka requested extensive bloodwork...bloodwork arrived in advance, the MRI disk rode to Ohio with us.
Dr. Zahka answered a lot of questions for us, reiterating what the others had said about her case being severe. Surgery would be necessary within a year, most likely, and unfortunately a year does not reduce the level of complexity with this surgery. Ten years would make a difference, but there's no way she'll go that long without surgery. He assures us he will review the MRI and the echo with other doctors in Cleveland, and will call us once he's done so.
Five days later, Dr. Zahka is telling me that it needs to be within six months now. There's no benefit to waiting, and even though he'd originally been of the opinion that an ICD (implantable cardioverter defibrillator) wasn't a good idea, he'd changed his mind about that, too.
Knowing that so many brilliant minds, both in Birmingham and Cleveland, have been talking, thinking, consulting about Ally is both comforting - under the circumstances - and upsetting, because the circumstances warrant so much attention. There's no doubt about it, her little heart is not in good shape. It's bad enough that while they do not usually want to perform such a serious surgery on such a small child, in her case not doing surgery is the riskier option.
It's heavy stuff. Hard for a parent, considering either path, knowing the risks involved.
My sweet, tender hearted, stubborn, smart, funny, silly girl. If I could trade places with her, I would. In a heartbeat.
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