"Mommy, why do I have to take sildenafil three times a day?"
Because, honey, it helps to lower the pressure in your pulmonary arteries--the vessels that bring blood from your heart to your lungs.
She stops and thinks, not quite grasping it, so I ask: Do you know what pressure is, DQ?
"No, mommy."
I gently poke her arm and ask: Do you feel that? That is light pressure.
I then pressed harder: That is harder pressure.
Now, I want you to think about the hose you use for your sprinkler. When the water is off, it lays there and you can squeeze it right?
She nods.
But when we turn on the water, the hose gets hard.
"Yes, mommy."
It is the pressure from the water pushing on the hose that makes it hard.
I pressed on her arm again.
The same thing happens in your arteries that carry blood to your lungs. They are very small, but your body is so big that you still need a lot of blood to keep your body going. All of that blood needs oxygen. So as your heart tries to push all that blood to your lungs through the small arteries, the pressure gets really hard.
I let that sink in for a moment, then press on her arm again (not hard, but enough that it could be felt).
What would happen if I pressed on your arm with this pressure for a long time?
"It would hurt me, Mommy. I would have a booboo."
Yes. What would happen in your lungs if we let the high pressure in your arteries continue?
"I would have booboos inside."
Yes, honey, you would. Sildenafil helps to lower the pressure and that is why you have to take it three times a day.
She didn't say much else, but from the look of her face, my Dancing Queen understood what I was saying. My sweet little 6 year old lost a little more of her innocence.
Showing posts with label pulmonary hypertension. Show all posts
Showing posts with label pulmonary hypertension. Show all posts
Thursday, June 5, 2014
Thursday, May 8, 2014
Conferences
There are two conferences that I have wanted to go to regarding two of the Dancing Queen's primary diagnoses--pulmonary hypertension and congenital heart defects. The conferences would allow me to meet people in person who have felt like family and helped me so much over the last several years.
What's more, both conferences are coming up very soon--the same weekend in the same city. I could easily attend both as the city is driving distance. The fees are not prohibitive for me either.
And I almost signed up to attend both just for the opportunity to be in the room with people who understand what I am going through. I was exhilarated at the thought.
Then I thought more.
None of the people in those rooms will be able to relate to me. They go to these conferences to find hope for a cure; new therapies; new drugs; new ways to combat these devastating illnesses. These people don't want to know I have come to terms with the fact that there is no cure; that I am not doing every potential procedure/surgery to prolong my daughter's death. There is no place for someone like me at those conferences.
Frankly, I would want to scream after an hour of hearing people talking about breakthroughs being made to help their children, while I have DQ's cardilogist and surgeon's voices in my head, repeating "No cure will come in time for your daughter. They are not working on it yet. It is too hard."
I know I'd want to throat punch every well-meaning parent who plies me with platitudes upon hearing the Dancing Queen's story. Hearing "oh, I'm sure they'll find a cure for your daughter" or "you should see my cardiologist, go to our hospital, your daughter will be fine" would make me want to bite back: "so you think I'm negligent because I haven't sought enough second opinions!"
Inevitably, I'd start to omit parts of DQ's story so I do not do something rash. But then I'd feel terrible, as if I was being untrue to DQ and myself.
I determined that I'd probably leave the conferences sad and more alone than when I arrived. I don't want that.
I don't want singular talk of hope and cures. These are life-threatening illnesses that are terminal a lot of the time. Ignoring that fact just alienates those of us who have run out of options. And for what purpose?!? To make other parents not have to think about the fact that their child could die too! It's bullshit; all of it.
I'm not pessimistic, but I'm also not unrealistic. Unfortunately, I am in the minority and nobody wants to be reminded of the uncomfortable truth about life-threatening illnesses.
Tuesday, November 19, 2013
Children Die
I know a lot of really great parents. They put everything they have into their children. They put their careers on hold, wear the same pair of glasses and blue jeans for ten years straight, move to be closer to the place that is best for their kids. They will lose their house, their friends, their sanity to find a cure or a least a reprieve for horrible diseases. They do it all; reach the wall; and then do more.
And in the back of their heads is always the notion that if they do just a little bit more, sacrifice everything, reach every doctor, talk to every other parent dealing with the same issues, the answer will come. Their child will be saved. Because that is what we are told. Science has come so far.
And no matter how many times you are told that there is nothing to be done, the answer in the back of your head says: "But try again; there must be something more. So and so's brother's girlfriend's cousin's niece went to Borneo and was saved. Surely, there is a Borneo waiting for us."
And even if we don't chase after Borneo and we decide enough is enough, subconsciously we wonder.
As expecting parents, we were never told that our baby could die. Or if we were, it was only "a possibility" just as winning the lotto jackpot is "a possibility". So when we are faced with the reality that our child is going to die, we can't handle it. That is NOT the way it happens. There is a medicine for everything. Aren't we inundated with commercials everyday stating just that!
So parents sacrifice their lives. Children endure extra procedures and pain. And in the end, they die anyway. Why? Because we aren't told that children die. We aren't allowed to talk about children dieing unless it is in the context of freak event--completely abnormal. But there is nothing abnormal about children dieing. Until modern history, it was abnormal to have all of your children survive to adulthood. But today, when we are all conditioned to believe that the norm is living to be an octogenarian, parents are afraid to say things are going bad. Parents, in the midst of sacrificing everything for their last chance to save their child, are all alone because they feel abnormal in losing a child or like they didn't push hard enough.
No parent should have to shield their pain when they need the most support because society can't handle the truth. Children die. They die every day. Their parents are wonderful, amazing parents who put everything into their kids, yet the child dies.
Please don't hide from it. Please don't make a parent facing their worst nightmare feel isolated or that they have to protect you. Children do die.
And in the back of their heads is always the notion that if they do just a little bit more, sacrifice everything, reach every doctor, talk to every other parent dealing with the same issues, the answer will come. Their child will be saved. Because that is what we are told. Science has come so far.
And no matter how many times you are told that there is nothing to be done, the answer in the back of your head says: "But try again; there must be something more. So and so's brother's girlfriend's cousin's niece went to Borneo and was saved. Surely, there is a Borneo waiting for us."
And even if we don't chase after Borneo and we decide enough is enough, subconsciously we wonder.
As expecting parents, we were never told that our baby could die. Or if we were, it was only "a possibility" just as winning the lotto jackpot is "a possibility". So when we are faced with the reality that our child is going to die, we can't handle it. That is NOT the way it happens. There is a medicine for everything. Aren't we inundated with commercials everyday stating just that!
So parents sacrifice their lives. Children endure extra procedures and pain. And in the end, they die anyway. Why? Because we aren't told that children die. We aren't allowed to talk about children dieing unless it is in the context of freak event--completely abnormal. But there is nothing abnormal about children dieing. Until modern history, it was abnormal to have all of your children survive to adulthood. But today, when we are all conditioned to believe that the norm is living to be an octogenarian, parents are afraid to say things are going bad. Parents, in the midst of sacrificing everything for their last chance to save their child, are all alone because they feel abnormal in losing a child or like they didn't push hard enough.
No parent should have to shield their pain when they need the most support because society can't handle the truth. Children die. They die every day. Their parents are wonderful, amazing parents who put everything into their kids, yet the child dies.
Please don't hide from it. Please don't make a parent facing their worst nightmare feel isolated or that they have to protect you. Children do die.
Tuesday, November 13, 2012
Not Happy
There are deep, dark pillows encircling her eyes. She finds it hard to wake each morning. She is tiring more easily. Yet, she has finally "kicked" the cold that has held on for months now.
The Dancing Queen looks so sick to me. And yet, I'm supposed to be happy with how she is doing now.
I'm not happy though. I want her to be fixed! I want her to not worry about fatiguing from swinging 10 minutes by herself on the big girl swing. I want her to look like a little girl instead of a tired old woman in a teeny, tiny body.
This sucks! It just sucks to know my daughter is steadily declining, so slowly that nobody else notices. They make me feel as if I am wrong to notice the little things. She is not improving.
She saw her pulmonologist yesterday. He was happy to see her smile; to see her play; to know the joy that is my beautiful daughter. But did he do anything to help her stop desatting as she sleeps? Did he give us a plan to make her healthy?
Could he?!?
No!
Yes, we've changed a med and it may help her breathe easier, but nothing was changed. Not really. Unless she gets worse, nothing will change.
And I'm not happy about that.
The Dancing Queen looks so sick to me. And yet, I'm supposed to be happy with how she is doing now.
I'm not happy though. I want her to be fixed! I want her to not worry about fatiguing from swinging 10 minutes by herself on the big girl swing. I want her to look like a little girl instead of a tired old woman in a teeny, tiny body.
This sucks! It just sucks to know my daughter is steadily declining, so slowly that nobody else notices. They make me feel as if I am wrong to notice the little things. She is not improving.
She saw her pulmonologist yesterday. He was happy to see her smile; to see her play; to know the joy that is my beautiful daughter. But did he do anything to help her stop desatting as she sleeps? Did he give us a plan to make her healthy?
Could he?!?
No!
Yes, we've changed a med and it may help her breathe easier, but nothing was changed. Not really. Unless she gets worse, nothing will change.
And I'm not happy about that.
Thursday, August 16, 2012
Beneath the Surface
It hides beneath the surface where nobody really sees.
She runs, she plays, she dances. She can't be sick.
But were you really paying attention? She stopped well before the other kids and started talking to you and making you forget she can't keep up. It's called a coping mechanism. She uses them all of the time--even when her physical and occupational therapists are testing her.
She is smart as a whip and will convince you to do something else if she can't keep up physically.
Heart disease is a silent killer.
Pulmonary hypertension is very well disguised.
All of it lethal.
If you don't pay close attention to every detail, you'd miss the decline.
Yes, she is sick. She hides it well. Don't hold it against her.
She runs, she plays, she dances. She can't be sick.
But were you really paying attention? She stopped well before the other kids and started talking to you and making you forget she can't keep up. It's called a coping mechanism. She uses them all of the time--even when her physical and occupational therapists are testing her.
She is smart as a whip and will convince you to do something else if she can't keep up physically.
Heart disease is a silent killer.
Pulmonary hypertension is very well disguised.
All of it lethal.
If you don't pay close attention to every detail, you'd miss the decline.
Yes, she is sick. She hides it well. Don't hold it against her.
Wednesday, May 30, 2012
Bucket List
Last summer, the Mad Scientist and I had a long weekend without the kids. I reveled in the luxury of extra time to myself. I vowed in this here spot on the web to take more time to myself. Shortly thereafter, DQ got sick and I remembered why I didn't schedule in time for myself. The problem with all of that is both were right. I deserve to do things for myself, yet I still have to take care of my family. So, for a while now, I've been trying to figure out how to accomplish that goal.
Then one of my circle of pulmonary hypertension friend's daughter was placed on hospice. They created a bucket list for Molly. When it became evident that Molly wasn't going to live long enough to accomplish the vast majority of things on her bucket list, people from across the country and the globe printed off Molly's picture and took her places and gave her experiences so her bucket list could be completed. In Molly's final days, she laid in her bed with her mom, looking at her picture traveling the world. She did so many things. And she continues to do so.
Molly's story made me think. I can't continue to put off my life until tomorrow. While I spend so much time trying to give DQ a wonderful life, I've ignored that for myself. And even though I tell the kids all of the time that nobody knows when they are going to die, something in me keeps saying "wait until tomorrow." So, I decided to start my own bucket list.
The problem is . . . I don't know what things I want to accomplish. I don't want to run a marathon or climb Mt. Everest. If I never swim with the dolphins or learn to play the violin, I'm okay with that. So, when I started this blog post last week, all I could think of was one thing--visit Iceland. But, really, I'd rather sit on a beach closer to home, than jump on a plane for a really long flight. So I took Iceland off my list. After all, a bucket list should be full of things you feel compelled to do and would regret not doing. While I think it would be fabulous to see Iceland, I'd rather be home relaxing with my family.
And so I continued to ponder what would be on my bucket list. Eventually, I came to the conclusion that there isn't any single thing I must do or I will regret not doing it . . . except spend time with my loved ones. I want time to enjoy my family. I want to be with them and see them enjoying life. I want to entertain in my home, inviting friends over, and make them lavish meals that I can watch them enjoy. Or even have a house that is convenient for just stopping by for coffee in the evening to chat.
I don't want to miss my kids going to bed every night. I want to hug them and kiss them and tell them stories. But, I still want to get them off to school in the morning and kiss them goodbye.
All of these things are very difficult right now because our house is so small. In order for me to be home at night when the kids go to bed, I have to pack up my work for the night, bring it home and clean off the dining room table just to set my computer down. While it only takes about 15 minutes before and after I work, it is a hassle that I just don't want to deal with for an hour's worth of work, so I kiss my babies over the phone and then again when they are asleep. But, if I had an office at home dedicated to my work, it wouldn't take that long. We don't currently have the space for me to have my own office (my kids share a bedroom!).
If I want to cook for friends, we have to squeeze into my dining room/office. Six people fit, sometimes eight, but that requires some people sitting in the other room! This is not conducive to entertaining.
So, in order to make my "bucket list" a reality, the Mad Scientist and I are looking for a new house--our forever home. I am excited and petrified all at that same time. Please wish me luck and when we have some space, you'll all be invited over for coffee or a gluten free lasagna extravaganza! (Yes, I am feeling better gluten free. Can't imagine going back!)
Then one of my circle of pulmonary hypertension friend's daughter was placed on hospice. They created a bucket list for Molly. When it became evident that Molly wasn't going to live long enough to accomplish the vast majority of things on her bucket list, people from across the country and the globe printed off Molly's picture and took her places and gave her experiences so her bucket list could be completed. In Molly's final days, she laid in her bed with her mom, looking at her picture traveling the world. She did so many things. And she continues to do so.
Molly's story made me think. I can't continue to put off my life until tomorrow. While I spend so much time trying to give DQ a wonderful life, I've ignored that for myself. And even though I tell the kids all of the time that nobody knows when they are going to die, something in me keeps saying "wait until tomorrow." So, I decided to start my own bucket list.
The problem is . . . I don't know what things I want to accomplish. I don't want to run a marathon or climb Mt. Everest. If I never swim with the dolphins or learn to play the violin, I'm okay with that. So, when I started this blog post last week, all I could think of was one thing--visit Iceland. But, really, I'd rather sit on a beach closer to home, than jump on a plane for a really long flight. So I took Iceland off my list. After all, a bucket list should be full of things you feel compelled to do and would regret not doing. While I think it would be fabulous to see Iceland, I'd rather be home relaxing with my family.
And so I continued to ponder what would be on my bucket list. Eventually, I came to the conclusion that there isn't any single thing I must do or I will regret not doing it . . . except spend time with my loved ones. I want time to enjoy my family. I want to be with them and see them enjoying life. I want to entertain in my home, inviting friends over, and make them lavish meals that I can watch them enjoy. Or even have a house that is convenient for just stopping by for coffee in the evening to chat.
I don't want to miss my kids going to bed every night. I want to hug them and kiss them and tell them stories. But, I still want to get them off to school in the morning and kiss them goodbye.
All of these things are very difficult right now because our house is so small. In order for me to be home at night when the kids go to bed, I have to pack up my work for the night, bring it home and clean off the dining room table just to set my computer down. While it only takes about 15 minutes before and after I work, it is a hassle that I just don't want to deal with for an hour's worth of work, so I kiss my babies over the phone and then again when they are asleep. But, if I had an office at home dedicated to my work, it wouldn't take that long. We don't currently have the space for me to have my own office (my kids share a bedroom!).
If I want to cook for friends, we have to squeeze into my dining room/office. Six people fit, sometimes eight, but that requires some people sitting in the other room! This is not conducive to entertaining.
So, in order to make my "bucket list" a reality, the Mad Scientist and I are looking for a new house--our forever home. I am excited and petrified all at that same time. Please wish me luck and when we have some space, you'll all be invited over for coffee or a gluten free lasagna extravaganza! (Yes, I am feeling better gluten free. Can't imagine going back!)
Thursday, November 17, 2011
Hot Mess
I think this is the longest I've gone without blogging since I started this blog. I guess I haven't had much to say that I was willing to share with the world. (I don't think I've ever run out of things to say though. If you've met me in person, you know it is hard to shut me up.) Lately though, I've thought it best to keep my thoughts and words close to the vest.
I have been petrified, angry, resolute, determined, and wistful. All at the same time.
The Dancing Queen had her seventh heart catheterization yesterday. They called me all of a week ago to schedule it. Six days to plan. Well, five days if you count the one day of pre-op testing at the hospital. That is not a lot of time. Needless to say, my emotional journey had to be sped up and condensed, leaving me a hot mess.
I'm still trying to comprehend all that we were told, but I think overall, it was as positive as we can expect for DQ. We've been told point blank and without reservation that DQ does not have pulmonary hypertension. But we were not told that she does not have high blood pressure in her pulmonary arteries at places. So, semantics are at play.
We were told the pressure in her right ventricle is higher than they'd like, but not high enough to necessitate surgery. However, there was the mention of the possibility for surgery in a year's time. I was not expecting that kind of news.
The doc tried to balloon DQ's stent in her right pulmonary artery bigger, but couldn't. The doc tried and tried, coming at it in all kinds of ways. In a year's time (or sooner), when they cath her again, they may try balooning again by going through DQ's neck and leg at the same time. Scary stuff. There was also talk of possible non-bypass procedures/surgeries if the neck/leg combo does not work. All of these things were fairly frightening.
Additional work that was called for, could not be done because it posed too serious a risk without enough possible benefit. So, at the end of the day, we got pictures and a plan for other pictures to be taken in the future. Unfortunately, the docs could not take all of the pictures needed.
The entire situation makes me angry that my baby had to go through this. Better imaging technology is needed! An invasive procedure should not be the only way to image the vasculature of the body.
It makes me sad that they couldn't help her like she needed. It worries me that we have to watch her closely for the need of additional surgery. And it breaks my heart to see my sweet, sweet girl in pain and crying. Her access is so limited that she has bruises all over body where they tried to place arterial lines and IVs (but failed). Before today, she had already lost 3 out of 4 cath points in her legs. To top it off, DQ is incredibly scared that she will have to return to the hospital. She now knows the hospital causes pain. The hospital is the boogey man. She begged us to not make her go back. And all we could say is "not tonight."
At the same time, I am incredibly grateful to know how well my baby is doing. I have many friends whose children did not make it. Friends whose children are much, much sicker today. Life is so very, very precious. Hug your babies tight and if you no longer hold them with your arms, I am sending you my love right now.
I have been petrified, angry, resolute, determined, and wistful. All at the same time.
The Dancing Queen had her seventh heart catheterization yesterday. They called me all of a week ago to schedule it. Six days to plan. Well, five days if you count the one day of pre-op testing at the hospital. That is not a lot of time. Needless to say, my emotional journey had to be sped up and condensed, leaving me a hot mess.
I'm still trying to comprehend all that we were told, but I think overall, it was as positive as we can expect for DQ. We've been told point blank and without reservation that DQ does not have pulmonary hypertension. But we were not told that she does not have high blood pressure in her pulmonary arteries at places. So, semantics are at play.
We were told the pressure in her right ventricle is higher than they'd like, but not high enough to necessitate surgery. However, there was the mention of the possibility for surgery in a year's time. I was not expecting that kind of news.
The doc tried to balloon DQ's stent in her right pulmonary artery bigger, but couldn't. The doc tried and tried, coming at it in all kinds of ways. In a year's time (or sooner), when they cath her again, they may try balooning again by going through DQ's neck and leg at the same time. Scary stuff. There was also talk of possible non-bypass procedures/surgeries if the neck/leg combo does not work. All of these things were fairly frightening.
Additional work that was called for, could not be done because it posed too serious a risk without enough possible benefit. So, at the end of the day, we got pictures and a plan for other pictures to be taken in the future. Unfortunately, the docs could not take all of the pictures needed.
The entire situation makes me angry that my baby had to go through this. Better imaging technology is needed! An invasive procedure should not be the only way to image the vasculature of the body.
It makes me sad that they couldn't help her like she needed. It worries me that we have to watch her closely for the need of additional surgery. And it breaks my heart to see my sweet, sweet girl in pain and crying. Her access is so limited that she has bruises all over body where they tried to place arterial lines and IVs (but failed). Before today, she had already lost 3 out of 4 cath points in her legs. To top it off, DQ is incredibly scared that she will have to return to the hospital. She now knows the hospital causes pain. The hospital is the boogey man. She begged us to not make her go back. And all we could say is "not tonight."
At the same time, I am incredibly grateful to know how well my baby is doing. I have many friends whose children did not make it. Friends whose children are much, much sicker today. Life is so very, very precious. Hug your babies tight and if you no longer hold them with your arms, I am sending you my love right now.
Wednesday, November 2, 2011
Halloween
We celebrated Halloween like most people do--went out trick or treating with the kids at least a gazillion times before Halloween and then topped it all off with a nice jaunt around our neighborhood, collecting more candy. We have so much candy now that it will not be eaten until next Halloween (not that I will allow it be in this house that long).
The kids had an absolute blast though. They loved every minute of it.
What's not to love about Halloween? You get to pretend to be something else and people give you candy.
Everyone loved Halloween, even the grannies and my hubby (but he always loves Halloween.)
Halloween was a great night. The Dancing Queen even got a kiss! She was sitting in her grandma's lap, kinda like the picture above with the Mad Scientist. She was handing out candy. And as she leaned over to drop candy in the bag of a boy of age 6 or 7, he leaned over and kissed her cheek! I was so shocked, I didn't say a thing. By the time I came to my senses, the boy had run off down the street.
Unfortunately, the night was not all fantasy and sugar as Halloweens of yore. Pulmonary hypertension has stolen yet another holiday from me. I've been trying to keep it all together with so many unknowns and so little choices, but on Halloween night, it all came out.
I ran back to the house for the stroller because DQ was tiring after only a couple of houses. As I returned, she was being lifted onto the porch of a neighbor and she was coughing, the hacking cough of PH, the cough we haven't heard in so, so long. At that sound, the floodgates opened. My baby will continue to get sicker. She will continue to decline. Her heart function will worsen. Her lungs will be destroyed. We have a very limited window to find her help to slow the destruction. And we are running out of options. We have no choice but to rely upon hope and sheer determination. And with those coughs, I didn't know if it would enough. I didn't know if this would be her last Halloween. And I broke.
The kids had an absolute blast though. They loved every minute of it.
 |
| DQ dressed as Thomas the Train for the second year in a row. And for the second year in a row, I purchased a different costume that she didn't wear. |
 |
| Cap'n Hook! I bet you never guessed that was coming. |
What's not to love about Halloween? You get to pretend to be something else and people give you candy.
 |
| Yes, she was eating a Snickers. |
Everyone loved Halloween, even the grannies and my hubby (but he always loves Halloween.)
Halloween was a great night. The Dancing Queen even got a kiss! She was sitting in her grandma's lap, kinda like the picture above with the Mad Scientist. She was handing out candy. And as she leaned over to drop candy in the bag of a boy of age 6 or 7, he leaned over and kissed her cheek! I was so shocked, I didn't say a thing. By the time I came to my senses, the boy had run off down the street.
Unfortunately, the night was not all fantasy and sugar as Halloweens of yore. Pulmonary hypertension has stolen yet another holiday from me. I've been trying to keep it all together with so many unknowns and so little choices, but on Halloween night, it all came out.
I ran back to the house for the stroller because DQ was tiring after only a couple of houses. As I returned, she was being lifted onto the porch of a neighbor and she was coughing, the hacking cough of PH, the cough we haven't heard in so, so long. At that sound, the floodgates opened. My baby will continue to get sicker. She will continue to decline. Her heart function will worsen. Her lungs will be destroyed. We have a very limited window to find her help to slow the destruction. And we are running out of options. We have no choice but to rely upon hope and sheer determination. And with those coughs, I didn't know if it would enough. I didn't know if this would be her last Halloween. And I broke.
Tuesday, October 25, 2011
I Hate Waiting!
I am so exhausted. I don't mean tired. I mean I am exhausted to the core. I have nothing left. Waiting is killing me.
It has only been a week since the Dancing Queen's cardiologist confirmed one of my worst fears. We are still waiting to hear the plan; to learn when DQ will have her seventh heart catheterization. I'm no good at waiting. And not knowing is so hard on me.
On top of that, I had to sit and wait in the hospital surgical suite for DQ today as she underwent a sedated brain scan hearing test. Waiting to hear how much damage has been done to her ears from multiple explosive and horrible ear infections. Waiting to hear whether we'll need to add further procedures or devices. I hate waiting.
DQ was so good, but fairly miserable after from having an empty stomach and being under anesthesia for over an hour. (Not to mention the vomiting/dry heaving she did from 4am through just before going into the OR because of how scared she was.) For the rest of the day, she wouldn't allow me to put her down for even a minute. As I held her, all I could think was why did she have to suffer through so much! The emotional roller coaster of it all takes a huge toll.
Tomorrow, I have to sit with the Dancing Queen in the same office I sat almost 2 years ago. I get to wait for the same doctor who gave me no hope 2 years ago; wait thinking that I have to ask him the same exact questions I did 2 years ago. Even worse though, I have to wait in that office, talk to that doctor, with so much more knowledge. And I have to list for him how often DQ gets sick. I need to convince him that something more needs to be done. That his decision to not help her immune system is only damaging her more and causing her heart and lungs to be overworked. Somehow, in my weak mental state, I have to stay sane in this situation. I have to keep my composure and not scream at him after I know he will make us wait for at least an hour (he is always late). I can't cry in his office. If I do, he won't help my baby because he'll just think I'm an emotion mom. But, frankly, I don't think I can keep myself even-keeled. (I can't even write this post without tears stinging my eyes.)
It has only been a week since the Dancing Queen's cardiologist confirmed one of my worst fears. We are still waiting to hear the plan; to learn when DQ will have her seventh heart catheterization. I'm no good at waiting. And not knowing is so hard on me.
On top of that, I had to sit and wait in the hospital surgical suite for DQ today as she underwent a sedated brain scan hearing test. Waiting to hear how much damage has been done to her ears from multiple explosive and horrible ear infections. Waiting to hear whether we'll need to add further procedures or devices. I hate waiting.
DQ was so good, but fairly miserable after from having an empty stomach and being under anesthesia for over an hour. (Not to mention the vomiting/dry heaving she did from 4am through just before going into the OR because of how scared she was.) For the rest of the day, she wouldn't allow me to put her down for even a minute. As I held her, all I could think was why did she have to suffer through so much! The emotional roller coaster of it all takes a huge toll.
Tomorrow, I have to sit with the Dancing Queen in the same office I sat almost 2 years ago. I get to wait for the same doctor who gave me no hope 2 years ago; wait thinking that I have to ask him the same exact questions I did 2 years ago. Even worse though, I have to wait in that office, talk to that doctor, with so much more knowledge. And I have to list for him how often DQ gets sick. I need to convince him that something more needs to be done. That his decision to not help her immune system is only damaging her more and causing her heart and lungs to be overworked. Somehow, in my weak mental state, I have to stay sane in this situation. I have to keep my composure and not scream at him after I know he will make us wait for at least an hour (he is always late). I can't cry in his office. If I do, he won't help my baby because he'll just think I'm an emotion mom. But, frankly, I don't think I can keep myself even-keeled. (I can't even write this post without tears stinging my eyes.)
Sunday, October 9, 2011
Etching Memories
I laid in my bed this morning, listening to my family playing games with each other. The laughter was infectious as my babies delighting in their pretend adventures as pirates. I ran downstairs; the crocodile in me had to chase Cap'n Hook. When I captured him, we all laughed. I reveled in the sounds and embraced the moment. I tried to etch it all in my mind so I would never forget; never forget the sounds, the smells, the visions, the feeling, the love.
I've done this often--try to capture a moment in my mind. But we were recently reminded how fragile life can be and how all of this can go away in an instant. So, this moment, this morning, I tried extra hard.
I had started to feel like it was possible that the Dancing Queen would have a future. She would grow up. She would go to college, choose a career, be an adult. I began to think that would be possible. She has been looking so good, even sick. I thought we had finally moved passed the hard part. I could put off the major worries for at least a couple of years. Yes, I would have to be concerned about viruses and stuff like that, but the big things, like heart failure and lung disease, could just be underlying issues that are only part of our life in that DQ takes daily meds. I was getting there.
Friday came and changed it all. DQ's pulmonary hypertension is back. That means her heart is working too hard to oxygenate her blood and the pressure from it all damages the pulmonary arteries that are already inadequate. DQ's heart and lungs are being damaged. And the more they are damaged, the harder they have to work to oxygenate DQ's blood. It is a vicious circle and eventually, the damage will be too much. Unlike last time this happened, I already know what choices we have. I've already called all of the specialists. I've heard all of their answers. I know they have nothing to offer. There is nothing to save her. NOTHING. nothing.
I have always felt in my gut that DQ would die young. I've hated myself for it. I've fought myself over it. I've tried to wish away the feeling. I've tried to will it away. I've even told myself that she will live to adulthood, figuring if I said it enough, my heart would believe it eventually. But my logical side keeps throwing questions as me: how long can her poor body last when it is beat up everyday? How long can an itty bitty heart that has been cut into and sewn shut, pruned, and messed with so many times keep working when it is forced to work so much harder than it should? How can her poor little lungs that take a beating daily keep working? Muscles can be overworked. Her poor little heart is worked so hard. And while it is healthier than it was a year ago, we've now reached her peak (or likely did a couple of months ago). Her heart will start declining again. What does that mean? How much time do we have?
I know nobody ever knows how much time they will have with their loved ones, but today, I wish I could believe that my baby will live a long, happy life with just enough troubles to know the value of hard work and just enough sorrow to appreciate when life is good. I want her to fail and learn from it. I want her to light up in wonder at the sight of winter's first snow. And I want to see her drive a car for the first time. I want to walk her down the aisle as she marries. I want to help her move into her own home and see the wonderful woman she will become. But, I can't even see how any of it is possible.
Today, I am making memories because these may be the only ones we get.
Please don't think by my writing my feelings down that we won't be doing something for DQ. I will be pushing like I always do. I've already started the process to have her placed on oxygen at night again. We will be getting her back on meds for PH. And should it progress, I will push for other meds even though the docs think they won't work. I won't be giving up on my baby. I love her too much.
I've done this often--try to capture a moment in my mind. But we were recently reminded how fragile life can be and how all of this can go away in an instant. So, this moment, this morning, I tried extra hard.
I had started to feel like it was possible that the Dancing Queen would have a future. She would grow up. She would go to college, choose a career, be an adult. I began to think that would be possible. She has been looking so good, even sick. I thought we had finally moved passed the hard part. I could put off the major worries for at least a couple of years. Yes, I would have to be concerned about viruses and stuff like that, but the big things, like heart failure and lung disease, could just be underlying issues that are only part of our life in that DQ takes daily meds. I was getting there.
Friday came and changed it all. DQ's pulmonary hypertension is back. That means her heart is working too hard to oxygenate her blood and the pressure from it all damages the pulmonary arteries that are already inadequate. DQ's heart and lungs are being damaged. And the more they are damaged, the harder they have to work to oxygenate DQ's blood. It is a vicious circle and eventually, the damage will be too much. Unlike last time this happened, I already know what choices we have. I've already called all of the specialists. I've heard all of their answers. I know they have nothing to offer. There is nothing to save her. NOTHING. nothing.
I have always felt in my gut that DQ would die young. I've hated myself for it. I've fought myself over it. I've tried to wish away the feeling. I've tried to will it away. I've even told myself that she will live to adulthood, figuring if I said it enough, my heart would believe it eventually. But my logical side keeps throwing questions as me: how long can her poor body last when it is beat up everyday? How long can an itty bitty heart that has been cut into and sewn shut, pruned, and messed with so many times keep working when it is forced to work so much harder than it should? How can her poor little lungs that take a beating daily keep working? Muscles can be overworked. Her poor little heart is worked so hard. And while it is healthier than it was a year ago, we've now reached her peak (or likely did a couple of months ago). Her heart will start declining again. What does that mean? How much time do we have?
I know nobody ever knows how much time they will have with their loved ones, but today, I wish I could believe that my baby will live a long, happy life with just enough troubles to know the value of hard work and just enough sorrow to appreciate when life is good. I want her to fail and learn from it. I want her to light up in wonder at the sight of winter's first snow. And I want to see her drive a car for the first time. I want to walk her down the aisle as she marries. I want to help her move into her own home and see the wonderful woman she will become. But, I can't even see how any of it is possible.
Today, I am making memories because these may be the only ones we get.
Please don't think by my writing my feelings down that we won't be doing something for DQ. I will be pushing like I always do. I've already started the process to have her placed on oxygen at night again. We will be getting her back on meds for PH. And should it progress, I will push for other meds even though the docs think they won't work. I won't be giving up on my baby. I love her too much.
Monday, August 15, 2011
Every Heart Has a Story: Pulmonary Hypertension
My first time in the cramped, dark office, I was eight months pregnant, listening to him explain truncus arteriosus, the congenital heart defect they thought my unborn baby had, and the surgery she would undergo to help her survive.
My second time in the office, I was in a wheel chair, having recently given birth. My baby, the Dancing Queen, had just had her first heart catheterization at one day old and he explained to us the heart defects she actually had (tetralogy of fallot with pulmonary atresia) and the surgery she would need at three days old.
My third time in the cramped office, he was letting us know that he had no answers. He did not know why DQ was not getting better, why she was still so sick several weeks after surgery. He explained that he may have to go in and replace the shunt he had placed, even though he'd never done it before. He had no answers . . .
So, a year later, when I entered his office for a fourth time, with my one-year-old on my hip, I was understandably shaken. I sat on the worn couch, looking out the window, hoping not to cry. Today, I can't remember if I did cry or not, but what I do remember is his answer to my question of whether DQ would have more energy, eat better, be more like an average kid after her surgery. His response was "no". He said she was already a pretty active child and likely wouldn't have the 180 turnaround that so many other parents saw with their children. I chose not to believe him. I wish I would have.
In April 2009, a 13 month old Dancing Queen underwent her "full-repair" (patched the huge hole between her two ventricles, shaved her stiff and thick tricuspid valve, widened the pulmonary arteries, and patched the aorta so it didn't open above the outflow and the inflow of the heart), but the surgeon merely called it a tune-up. If only I had heard that statement for what it really meant. I assumed the doc called it a tune-up because the homograft they used to connect her heart to her pulmonary arteries would need to be replaced, not that she would need any other type of surgery. And even after DQ was in the hospital for 3 weeks post op, was on a ventilator for a week, and had to be re-intubated after the vent was first taken off, I still thought she was going to be amazingly better after her repair. I held an amazing optimism.
Instead, after getting home, DQ remained fairly weak and actually got worse. She spent a lot of time that summer in the hospital, sick. Finally, in August, it was determined that DQ had pulmonary hypertension (elevated pressure in the pulmonary arteries, which was causing her heart to work extra hard, damaging it, and causing damage to her already small pulmonary arteries). I didn't know much about PH at that time, so I googled it. That was a bad idea. (Much of the data on the general web about PH gives grim prognoses--less than 2 years to live after onset.) After reading a couple of pages, I stopped, too scared to even think of the possibility. I held onto the one positive nugget I found: if the underlying cause can be corrected, PH can go away. I figured the docs would determine why her CHDs were now causing PH. DQ's cardiologist had mentioned that DQ's right pulmonary artery had pinched down following surgery and that could possibly cause the elevated pressures. She did indicate that would be highly unusual, but I ignored the doubt and hung on to only positive possibilities.
In September, DQ had her fifth heart catheterization and the doctor ballooned and stented her right pulmonary artery where it had been pinched. It was believed at the time that the simple stent had reduced DQ's pulmonary pressures. We were told for the first time after that cath that DQ had moderate pulmonary vascular disease. Her pulmonary arteries are like a tree without leaves rather than a tree with leaves as they should be. We were told the stent, with the increased blood flow, should help those PAs grow along with lowering the pulmonary pressures.
A follow up echocardiogram confirmed the lower pressures. I was ecstatic at the numbers. I held on to those beautiful numbers, waiting for the miraculous turnaround. But all that I saw was DQ not doing well. She continued to do worse. I kept having to call the cardiologist because DQ was swollen. We kept having to up her diruectics when the numbers said there was no need for the medicines. Yet, I still let myself believe the positive.
In December 2009, DQ saw the ENT because she kept getting ear infections. The ENT wanted to place tubes, but needed cardiac clearance for the anesthesia. It was at that appointment that we learned DQ still had pulmonary hypertension (the previous echo had been wrong). It was at that point that I could no longer hide behind the positive.
DQ's cardiologist explained that DQ's PH was likely caused by the pulmonary vascular disease (hypoplastic distal pulmonary arteries) and, accordingly, could not be treated through any means currently known to science. She suggested we see DQ's pulmonologist, but left us with a grim reality.
The next week, DQ and I waited two hours to see the pulmonologist. When he finally came in, he listened to my story, and said he had nothing. He ordered DQ to be placed on oxygen at night to help her lungs get a break, but he gave me no other hope. When I asked him the prognosis, his response was "you already know how bad this is. I have nothing more to offer you." Needless to say, our holidays were not that great in 2009. We grieved a lot and spent a ton of time together as a family, loving our very sick little girl.
When I wasn't spending time with DQ, I was making calls. I was searching the internet. I was posting requests. I did everything in my power to find every pediatric PH specialist in the country. I contacted them all. Almost all of them responded to me with a fairly uniform answer: "PH caused by pulmonary vascular disease cannot be treated."
By the end of January 2010, I was desperate. I left messages for DQ's cardiologist, but the messages never seemed to get through. So, I finally sent a fax to DQ's cardiologist with a huge list of questions. Within an hour, she called me back. An hour later, DQ had a cath set up for the next week. The local docs were no longer going to give up on my girl and I wasn't about to stop trying to save her.
At the beginning of February, she had her 6th heart catheterization. The docs learned that DQ's lungs responded to nitrogen, so they started her on revatio (a.k.a. sildenafil, a.k.a. viagra). But, she developed pneumonia and stayed hospitalized for 10 days. Upon discharge, we weren't given any promises and were told good luck.
Through the next several months, I continued to search for another answer, as we grew more and more tired from having to give Revatio three times a day, meaning staying up until 11:00pm every single night to give the final dose of the day. And yet, each time DQ went to the cardiologist, nothing would change.
Finally, in April or May, as I stood by DQ's hospital bed (respiratory virus), my cell phone began to ring. It was a PH specialist from California. He was the first doctor who did not dismiss DQ's case as hopeless. He offered to see her.We just had to get her healthy, keep her healthy, and find a time to travel.
We waited and waited and finally, DQ went to see the PH specialist the end of July 2010. She had a cardiac MRI and examination. After it was all said and done, the PH specialist stated that DQ's pressures were likely originating from her heart because of her valveless conduit and a pseudo-aneurism in her conduit (things we knew about for over a year). He also explained that it was typical for someone with DQ's mix of CHDs to start declining without real explanation or solution, but just not usually as quickly as she had. Usually, the decline starts in the teenage years. He suggested that DQ's best possibility was replacing the conduit with a valved one. He didn't think that would solve everything and may not work at all, but it was the only idea. He pushed to have the surgery completed within a month so hopefully DQ's damaged heart could start to heal.
Upon our return, I spoke with DQ's primary cardiologist. She didn't think surgery was going to help DQ either, but didn't think it would hurt. She had no other ideas and left it up to us, saying she would support either choice. We opted to talk with DQ's surgeon, but he was on vacation. So, we spent August on pins and needles, not knowing what to do. Should we put our child through another open heart surgery? If we do it, will the local surgeons agree with it? Should we have the local surgeons operate if they agree, but don't believe it is necessary? Should we have the surgery done in California, so far from home with doctors and nurses we don't know and don't know DQ? There were so many unknowns and one sick little girl.
Finally, the surgeon talked with DQ's primary cardiologist and indicated that he thought DQ should have surgery. He would do it and he would put DQ on his calendar, but first we had to come down to his office, that same cramped room with the same worn brown couch, for an examination.
And so, I entered that cramped office once again in late summer 2010, still not knowing whether the surgeon agreed to the surgery because we were going to do it anyway or if he believed it was the best option. I wasn't going to hand my baby over to anyone who didn't believe in what they were doing, even if I had trusted them over and over before. Fortunately, we left knowing that everyone was in agreement.
On Monday, September 20, 2010, I handed my sweet toddler over to the surgeons once again. She left me, drugged out on versed, thinking her pacifier was a riot around 7:40 am. Seriously, she was waving it in front of her face, giggling. Around 9:45am, we were told the surgery was starting. It takes a good two hours to get all of the lines in and anesthesia properly complete. It took over an hour to get through DQ's sternum because of all of the scar tissue she had from open her chest multiple times. She went on the heart-lung bypass machine around 12:30 pm and came off around 4:00pm. At 7:00pm, they came to get us so we could watch our girl on her way from the OR up to the PICU. I gave her one more kiss.
It took 11 hours in the OR to make our miracle happen. What wasn't evident from images produced by numerous echocardiograms, heart catherterizations, and an MRI was that DQ's tricuspid valve had a huge hole between two of the leaflets, her PFO remained open (small hole to upper chambers of the heart), and the stent that had been placed in the right pulmonary artery the year before, was blocking blood flow to the left lung. On that Monday, my favorite surgeon fixed all of those things and he replaced DQ's right ventricle to pulmonary artery conduit with a valved, porcine (pig) conduit.
My baby was able to come off of the ventilator the very next day! She was home by that Saturday. She was miraculously better! So much better than anyone had hoped.
Eleven months later, DQ's pulmonary pressures have decreased. They are still higher than normal, but no longer dangerous. She is still dependent upon a lot of medications that the docs wouldn't expect, but since they help her, we continue their use. DQ's last echo was a couple of weeks ago and her heart has continued to get smaller (a very good thing) and the leak in her tricuspid valve is almost non-existent. These are all signs that surgery was a success and my push to find answers so worth it. My baby's heart is the best it ever has been and will be.
The surgeon did explain that there is nothing he can do for her distal pulmonary arteries though. That he cannot make them branch and grow. And unlike most cases, DQ cannot have more stents inserted into her main pulmonary arteries to make them bigger so that the distal arteries can grow. Placing any stents will only cut off blood flow to the other parts of DQ's lungs because of their odd placement.
So, we hope with time and better health that DQ's pulmonary arteries will grow on their own. But we were warned that if they don't grow more than proportionately, we will be in the same place again, but without anything to fix. At some point, without extra growth, DQ's pulmonary arteries will no longer be able to sustain her and the pressures will increase again because her heart will start working harder to try to force blood to the lungs to get oxygenated better. And at some point, she will be desperately sick again. I'm holding out hope for new technologies and medications.
Practically speaking though, I am enjoying my time with my beautiful daughter, soaking her up. Trying not to let her precarious future take away from her love of life.
The Dancing Queen's story from conception and my post from last year's Every Heart Has a Story can be found on the navigation bar at "Dancing Queen" and a fuller description of her heart defects is on the navigation bar at "I'm a Heart Mom". I also maintain a carepage for DQ that is just about her health and specifically her story. If you want to know more or want to follow DQ, send me an email at momonaline (at) gmail (dot) com.
Finally, if you haven't stopped by Stefenie's blog and read the other heart stories posted there, please do so. Or, if you are a CHDer or a family member of a CHDer, write up your heart story, and link-up with the rest of us.
My second time in the office, I was in a wheel chair, having recently given birth. My baby, the Dancing Queen, had just had her first heart catheterization at one day old and he explained to us the heart defects she actually had (tetralogy of fallot with pulmonary atresia) and the surgery she would need at three days old.
My third time in the cramped office, he was letting us know that he had no answers. He did not know why DQ was not getting better, why she was still so sick several weeks after surgery. He explained that he may have to go in and replace the shunt he had placed, even though he'd never done it before. He had no answers . . .
So, a year later, when I entered his office for a fourth time, with my one-year-old on my hip, I was understandably shaken. I sat on the worn couch, looking out the window, hoping not to cry. Today, I can't remember if I did cry or not, but what I do remember is his answer to my question of whether DQ would have more energy, eat better, be more like an average kid after her surgery. His response was "no". He said she was already a pretty active child and likely wouldn't have the 180 turnaround that so many other parents saw with their children. I chose not to believe him. I wish I would have.
 |
| DQ a week before her surgery in 2009. |
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| DQ immediately post-op April 2009 |
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| DQ learned to stand in a hospital bed in June 2009 at 16 months old. |
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| In July 2009, DQ perfected standing in a hospital bed. |
A follow up echocardiogram confirmed the lower pressures. I was ecstatic at the numbers. I held on to those beautiful numbers, waiting for the miraculous turnaround. But all that I saw was DQ not doing well. She continued to do worse. I kept having to call the cardiologist because DQ was swollen. We kept having to up her diruectics when the numbers said there was no need for the medicines. Yet, I still let myself believe the positive.
In December 2009, DQ saw the ENT because she kept getting ear infections. The ENT wanted to place tubes, but needed cardiac clearance for the anesthesia. It was at that appointment that we learned DQ still had pulmonary hypertension (the previous echo had been wrong). It was at that point that I could no longer hide behind the positive.
DQ's cardiologist explained that DQ's PH was likely caused by the pulmonary vascular disease (hypoplastic distal pulmonary arteries) and, accordingly, could not be treated through any means currently known to science. She suggested we see DQ's pulmonologist, but left us with a grim reality.
The next week, DQ and I waited two hours to see the pulmonologist. When he finally came in, he listened to my story, and said he had nothing. He ordered DQ to be placed on oxygen at night to help her lungs get a break, but he gave me no other hope. When I asked him the prognosis, his response was "you already know how bad this is. I have nothing more to offer you." Needless to say, our holidays were not that great in 2009. We grieved a lot and spent a ton of time together as a family, loving our very sick little girl.
 |
| This picture was taken the day after meeting with the pulmonologist. Ma tried to help distract us with cookies! Or was she just trying to soak up as much of DQ as she could? I think it was both. |
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| While the holidays had a very grim shadow, we did still have some fun. |
By the end of January 2010, I was desperate. I left messages for DQ's cardiologist, but the messages never seemed to get through. So, I finally sent a fax to DQ's cardiologist with a huge list of questions. Within an hour, she called me back. An hour later, DQ had a cath set up for the next week. The local docs were no longer going to give up on my girl and I wasn't about to stop trying to save her.
At the beginning of February, she had her 6th heart catheterization. The docs learned that DQ's lungs responded to nitrogen, so they started her on revatio (a.k.a. sildenafil, a.k.a. viagra). But, she developed pneumonia and stayed hospitalized for 10 days. Upon discharge, we weren't given any promises and were told good luck.
 |
| DQ in the hospital after that February cath and pneumonia. Here, she is watching "Cars" or "Baby Signing Time", her favorite videos then and now. |
Finally, in April or May, as I stood by DQ's hospital bed (respiratory virus), my cell phone began to ring. It was a PH specialist from California. He was the first doctor who did not dismiss DQ's case as hopeless. He offered to see her.We just had to get her healthy, keep her healthy, and find a time to travel.
We waited and waited and finally, DQ went to see the PH specialist the end of July 2010. She had a cardiac MRI and examination. After it was all said and done, the PH specialist stated that DQ's pressures were likely originating from her heart because of her valveless conduit and a pseudo-aneurism in her conduit (things we knew about for over a year). He also explained that it was typical for someone with DQ's mix of CHDs to start declining without real explanation or solution, but just not usually as quickly as she had. Usually, the decline starts in the teenage years. He suggested that DQ's best possibility was replacing the conduit with a valved one. He didn't think that would solve everything and may not work at all, but it was the only idea. He pushed to have the surgery completed within a month so hopefully DQ's damaged heart could start to heal.
 |
| Just arrived at our hotel after a long flight. |
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| Enjoying an ocean view. |
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| My sweet girl, chillin after a long day at the ocean, following two very long days at the hospital. |
Finally, the surgeon talked with DQ's primary cardiologist and indicated that he thought DQ should have surgery. He would do it and he would put DQ on his calendar, but first we had to come down to his office, that same cramped room with the same worn brown couch, for an examination.
And so, I entered that cramped office once again in late summer 2010, still not knowing whether the surgeon agreed to the surgery because we were going to do it anyway or if he believed it was the best option. I wasn't going to hand my baby over to anyone who didn't believe in what they were doing, even if I had trusted them over and over before. Fortunately, we left knowing that everyone was in agreement.
On Monday, September 20, 2010, I handed my sweet toddler over to the surgeons once again. She left me, drugged out on versed, thinking her pacifier was a riot around 7:40 am. Seriously, she was waving it in front of her face, giggling. Around 9:45am, we were told the surgery was starting. It takes a good two hours to get all of the lines in and anesthesia properly complete. It took over an hour to get through DQ's sternum because of all of the scar tissue she had from open her chest multiple times. She went on the heart-lung bypass machine around 12:30 pm and came off around 4:00pm. At 7:00pm, they came to get us so we could watch our girl on her way from the OR up to the PICU. I gave her one more kiss.
 |
| Playing in pre-op. |
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| Giggling at her pacifier, doped up on tons of versed. |
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| DQ immediately post-op, September 2010. |
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| A couple days post-op, looking ready to go home. |
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| Exactly one week post-op, home and doing well. |
The surgeon did explain that there is nothing he can do for her distal pulmonary arteries though. That he cannot make them branch and grow. And unlike most cases, DQ cannot have more stents inserted into her main pulmonary arteries to make them bigger so that the distal arteries can grow. Placing any stents will only cut off blood flow to the other parts of DQ's lungs because of their odd placement.
So, we hope with time and better health that DQ's pulmonary arteries will grow on their own. But we were warned that if they don't grow more than proportionately, we will be in the same place again, but without anything to fix. At some point, without extra growth, DQ's pulmonary arteries will no longer be able to sustain her and the pressures will increase again because her heart will start working harder to try to force blood to the lungs to get oxygenated better. And at some point, she will be desperately sick again. I'm holding out hope for new technologies and medications.
Practically speaking though, I am enjoying my time with my beautiful daughter, soaking her up. Trying not to let her precarious future take away from her love of life.
 |
| Dancing Queen in August 2011. |
The Dancing Queen's story from conception and my post from last year's Every Heart Has a Story can be found on the navigation bar at "Dancing Queen" and a fuller description of her heart defects is on the navigation bar at "I'm a Heart Mom". I also maintain a carepage for DQ that is just about her health and specifically her story. If you want to know more or want to follow DQ, send me an email at momonaline (at) gmail (dot) com.
Finally, if you haven't stopped by Stefenie's blog and read the other heart stories posted there, please do so. Or, if you are a CHDer or a family member of a CHDer, write up your heart story, and link-up with the rest of us.
Saturday, July 9, 2011
AUGHHHHHHHHHHHHHHHHHHHHHHH!
Okay, I'm better now that I let out that scream. The Dancing Queen has been "eating" the same two pieces of turkey sausage for 20 minutes. She shoved them both in her mouth when she misunderstood her dad's question as to whether she would eat candy. She said yes and shoved the sausage in her mouth because she knew there'd be a price. The Mad Scientist only meant to learn whether DQ had room for more food, but she is 3 and thought she was actually getting the candy. Since I too misunderstood the Mad Scientist, I got her candy. Yet, with the motivation of a chocolate kiss, she is not swallowing the sausage! AUGH!!!!!!!!!!!
Getting DQ to eat is so frustrating! When it is all said and done, with those two very small pieces of sausage, DQ ate four bites of turkey sausage link (about 1/3 to 1/2 a link), two bites of a frosted strawberry pop tart (low fat even--another AUGH!!!!! why would you buy lowfat when you plan to give it to DQ!!!!), 4 ounces her crazy, ridiculous, expensive amnioacid only formula (aka milk), a swig of orange juice, and one chocolate kiss. We'll be lucky if she got to 200 calories on that meal. AUGH!!!!!!!
Yes, I know many kids are picky eaters and that breakfast doesn't sound too appetizing, but it doesn't really matter. DQ refuses to eat breakfast. Every. Single. Day! Usually, she requests chicken baby food for breakfast. She prefers the number 2s (small jars) and eats about 1/3 to 1/2 a jar (maybe 40 calories), then some yogurt covered raisins, and 6 ounces of milk. In total, about 230 calories. She is supposed to be getting about 1500 calories a day! And if she had her choice, she wouldn't drink milk, she'd drink water!!!!!!! The milk provides the most calories and nutrients for her and water has none o that! AUGH!!!!!!!!!!!!!
DQ eats slightly better for lunch as long as she is not tired. If she is tired, she won't eat a thing. Dinner, she usually does fairly well, but still nothing compared to TRex at her age or even TRex at her size. At 3 years old, DQ is the same size TRex was at 18 months old.
HOW DO WE GET HER TO EAT?
DQ loves food, especially burritos, chili, and spaghetti. She plays chef all of the time. She tries everything. She just won't eat. She did food school with the feeding therapists. We did the exercises at home with her. She improved leaps and bounds, but still, IT IS NOT ENOUGH!
DQ saw her GI doc yesterday and on their scale (the one I trust the most) she still weighs about 25 pounds. The Dancing Queen is almost 40 months old and she weighs almost 25 pounds. *Heavy, heavy sigh*
Her GI doc is the very best and DQ has improved since her last visit because she is not vomiting. We even made it through a dinner at Big Boy last weekend without DQ vomiting on the table. Huge victory for us! And since DQ has been complaining of chest pain at breakfast every morning, he decided to switch up her meds to see if we can get some improvement.
I desperately hope the med change will work. DQ needs to eat because she needs to grow. Growing is the only chance she has at survival. I'm not too concerned about her being small stature. I want her pulmonary arteries to grow. I understand that the pulmonary arteries stop growing around age 6 or so (maybe I'm wrong and it is older, I couldn't find this "fact" online in a quick search). If 6 is the magic age, we're over halfway there and DQ's pulmonary arteries are too small for her current size, let alone a teenager or an adult size. She needs to eat to grow those arteries. There are no interventions, no medicines, no surgeries to be done to help those grow. If they stay small, as the rest of her grows and her blood increases, her pulmonary hypertension will get worse. Her heart can't take much more strain. It already works harder than most hearts. It beats like she is exercising in her sleep.
Does anyone have any suggestions to get DQ to eat more?
Getting DQ to eat is so frustrating! When it is all said and done, with those two very small pieces of sausage, DQ ate four bites of turkey sausage link (about 1/3 to 1/2 a link), two bites of a frosted strawberry pop tart (low fat even--another AUGH!!!!! why would you buy lowfat when you plan to give it to DQ!!!!), 4 ounces her crazy, ridiculous, expensive amnioacid only formula (aka milk), a swig of orange juice, and one chocolate kiss. We'll be lucky if she got to 200 calories on that meal. AUGH!!!!!!!
Yes, I know many kids are picky eaters and that breakfast doesn't sound too appetizing, but it doesn't really matter. DQ refuses to eat breakfast. Every. Single. Day! Usually, she requests chicken baby food for breakfast. She prefers the number 2s (small jars) and eats about 1/3 to 1/2 a jar (maybe 40 calories), then some yogurt covered raisins, and 6 ounces of milk. In total, about 230 calories. She is supposed to be getting about 1500 calories a day! And if she had her choice, she wouldn't drink milk, she'd drink water!!!!!!! The milk provides the most calories and nutrients for her and water has none o that! AUGH!!!!!!!!!!!!!
DQ eats slightly better for lunch as long as she is not tired. If she is tired, she won't eat a thing. Dinner, she usually does fairly well, but still nothing compared to TRex at her age or even TRex at her size. At 3 years old, DQ is the same size TRex was at 18 months old.
HOW DO WE GET HER TO EAT?
DQ loves food, especially burritos, chili, and spaghetti. She plays chef all of the time. She tries everything. She just won't eat. She did food school with the feeding therapists. We did the exercises at home with her. She improved leaps and bounds, but still, IT IS NOT ENOUGH!
DQ saw her GI doc yesterday and on their scale (the one I trust the most) she still weighs about 25 pounds. The Dancing Queen is almost 40 months old and she weighs almost 25 pounds. *Heavy, heavy sigh*
Her GI doc is the very best and DQ has improved since her last visit because she is not vomiting. We even made it through a dinner at Big Boy last weekend without DQ vomiting on the table. Huge victory for us! And since DQ has been complaining of chest pain at breakfast every morning, he decided to switch up her meds to see if we can get some improvement.
I desperately hope the med change will work. DQ needs to eat because she needs to grow. Growing is the only chance she has at survival. I'm not too concerned about her being small stature. I want her pulmonary arteries to grow. I understand that the pulmonary arteries stop growing around age 6 or so (maybe I'm wrong and it is older, I couldn't find this "fact" online in a quick search). If 6 is the magic age, we're over halfway there and DQ's pulmonary arteries are too small for her current size, let alone a teenager or an adult size. She needs to eat to grow those arteries. There are no interventions, no medicines, no surgeries to be done to help those grow. If they stay small, as the rest of her grows and her blood increases, her pulmonary hypertension will get worse. Her heart can't take much more strain. It already works harder than most hearts. It beats like she is exercising in her sleep.
Does anyone have any suggestions to get DQ to eat more?
Saturday, April 2, 2011
Every Heart Has a Story--Relationships Take Two
I know that my posts tend to be on the introspective side and dark because this is my outlet. However, I love my life and the people in it. I have been remiss since the day I posted my Every Heart Has a Story--Relationships. I posted the day after the Dancing Queen was hospitalized, the day after we almost lost her again. I had not seen her since I left to pick TRex from school and when I left, she was doing extraordinarily poorly. And even though I had been writing my Relationships post for a couple of weeks, I finished it on that dreary morning. As a result, it ended up with more of the negative, than the positive. When I read the posts from other heart moms, I realized I forgot to write about the fabulous changes that occurred as a result of DQ's congenital heart defects. I am rectifying that oversight today.
One of the most wonderful things that has happened to me as a result of CHD and pulmonary hypertension is that I don't take my relationships for granted. I try to let the people I love know that I love them. There is no guaranty of a tomorrow for any of us. I know that now. It allows me to appreciate the ones I love for who they are. My core relationships are stronger as a result.
CHD has also deepened my belief in the goodness of people in general. I am an optimist at heart. I try to see the good as much as possible. I think we should all look out for each other, take care of each other. Unfortunately, with the political discussions that have been taking place in this country over the last several years, I didn't feel like society at large really cares to help each other. Everybody was out for themselves. But, because of DQ's CHDs, I've learned that perfect strangers care. They don't want to see my baby suffer. They will come together to help a little girl they have never met simply because she is sick. They will help our family because they care so much.
DQ's carepage has had close to 1,000 unique visitors and many who regularly read it. I know that the posts are also emailed from several people and forwarded on from them as well (I get emails from people well outside my circle that are a forward of a forward of a forward of a post). Other people have added DQ to their webpages for children to pray for and she has been on countless prayer lists across the globe. While I do not believe in a higher power, my heart is filled with gratitude and warmth for the care and love shown to my girl. All of these acts make me realize people do care and have made me appreciate everyone around me more.
The most humbling act of caring toward my family happened last year. It reaffirmed my faith in humanity more than anything. When we finally found a doctor to give us a second opinion regarding DQ's pulmonary hypertension and we had to fly across the country, my family jumped into action (and wouldn't let me say no) and threw a benefit for DQ. They raised a lot of money that allowed us to travel without the added worry of cost and to stay home with DQ as she prepared for surgery. We were beyond grateful for that help. But more importantly, I felt we were part of a community who was working to give DQ a better life or at least a chance at more life. We had strangers from off of the street see the banner with DQ's picture, stop by and donate. We had people read the fliers and just want to meet the amazing girl who had been through so much. My entire family came together with their friends to work on this amazing event for my daughter. They laughed and they planned, they accepted my co-workers and DQ's therapists into their embrace. Everyone rallied around my girl. Everyone wore shirts with her name. Seeing so much love in one place for my family reaffirmed my belief that people are good at heart.
Without DQ's CHDs, I would never have started the carepage, I would not have needed the support of the community at large, and I am sure I would be much more cynical and angry with society. Instead, I have hope.
One of the most wonderful things that has happened to me as a result of CHD and pulmonary hypertension is that I don't take my relationships for granted. I try to let the people I love know that I love them. There is no guaranty of a tomorrow for any of us. I know that now. It allows me to appreciate the ones I love for who they are. My core relationships are stronger as a result.
CHD has also deepened my belief in the goodness of people in general. I am an optimist at heart. I try to see the good as much as possible. I think we should all look out for each other, take care of each other. Unfortunately, with the political discussions that have been taking place in this country over the last several years, I didn't feel like society at large really cares to help each other. Everybody was out for themselves. But, because of DQ's CHDs, I've learned that perfect strangers care. They don't want to see my baby suffer. They will come together to help a little girl they have never met simply because she is sick. They will help our family because they care so much.
DQ's carepage has had close to 1,000 unique visitors and many who regularly read it. I know that the posts are also emailed from several people and forwarded on from them as well (I get emails from people well outside my circle that are a forward of a forward of a forward of a post). Other people have added DQ to their webpages for children to pray for and she has been on countless prayer lists across the globe. While I do not believe in a higher power, my heart is filled with gratitude and warmth for the care and love shown to my girl. All of these acts make me realize people do care and have made me appreciate everyone around me more.
The most humbling act of caring toward my family happened last year. It reaffirmed my faith in humanity more than anything. When we finally found a doctor to give us a second opinion regarding DQ's pulmonary hypertension and we had to fly across the country, my family jumped into action (and wouldn't let me say no) and threw a benefit for DQ. They raised a lot of money that allowed us to travel without the added worry of cost and to stay home with DQ as she prepared for surgery. We were beyond grateful for that help. But more importantly, I felt we were part of a community who was working to give DQ a better life or at least a chance at more life. We had strangers from off of the street see the banner with DQ's picture, stop by and donate. We had people read the fliers and just want to meet the amazing girl who had been through so much. My entire family came together with their friends to work on this amazing event for my daughter. They laughed and they planned, they accepted my co-workers and DQ's therapists into their embrace. Everyone rallied around my girl. Everyone wore shirts with her name. Seeing so much love in one place for my family reaffirmed my belief that people are good at heart.
Without DQ's CHDs, I would never have started the carepage, I would not have needed the support of the community at large, and I am sure I would be much more cynical and angry with society. Instead, I have hope.
Tuesday, February 8, 2011
Scatter Brain
These are the days being a working mom is hard. My son is sick, very sick. He has the flu, a flu bug strong enough to bust through the flu vaccine. He does not get sick like this frequently and all of my mom fibers just want stay home with him and snuggle him, but I can't. I am buried in work right now and trying to prove I still am who I think I am. The Mad Scientist will stay with TRex and I will trudge to work and . . . I don't know.
There is no question that I will get work done, but my mind will be thinking of TRex and the Dancing Queen. I admit that TRex's illness has me more worried about the Dancing Queen getting it than TRex having it. He has a fully functioning immune system, great respiratory system, and healthy heart to fight this. The Dancing Queen does not and I don't recall a single sickness TRex has suffered through that he has not given to his sister (save one stomach bug Christmas 2008). Let's face it, I will be distracted by sick kids. This doesn't help because my mind is distracted a lot more lately anyway.
I think my brain stopped fully functioning on December 14, 2009, the day we were told the doctors had nothing more they could do for the Dancing Queen. She had a matter of years to live and there was nothing to be done. Luckily, I don't listen very well and found a second doctor willing to look at her case, which eventually led to the Dancing Queen's third major heart surgery last September and she is improving. We still have no guarantees, but nobody does. However, since that December day, I am much easier to distract. Even now, I have to work very hard to concentrate on anything for too long. It takes me longer to complete tasks. This was never me. I could get it all done quickly. I would plow through. I don't like this new me, but I haven't found a fix yet. I guess I'm still trying to figure this whole heart mom thing out. It would be so much easier if kids came with an instruction manual!
There is no question that I will get work done, but my mind will be thinking of TRex and the Dancing Queen. I admit that TRex's illness has me more worried about the Dancing Queen getting it than TRex having it. He has a fully functioning immune system, great respiratory system, and healthy heart to fight this. The Dancing Queen does not and I don't recall a single sickness TRex has suffered through that he has not given to his sister (save one stomach bug Christmas 2008). Let's face it, I will be distracted by sick kids. This doesn't help because my mind is distracted a lot more lately anyway.
I think my brain stopped fully functioning on December 14, 2009, the day we were told the doctors had nothing more they could do for the Dancing Queen. She had a matter of years to live and there was nothing to be done. Luckily, I don't listen very well and found a second doctor willing to look at her case, which eventually led to the Dancing Queen's third major heart surgery last September and she is improving. We still have no guarantees, but nobody does. However, since that December day, I am much easier to distract. Even now, I have to work very hard to concentrate on anything for too long. It takes me longer to complete tasks. This was never me. I could get it all done quickly. I would plow through. I don't like this new me, but I haven't found a fix yet. I guess I'm still trying to figure this whole heart mom thing out. It would be so much easier if kids came with an instruction manual!
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