I'm often blindsided by fears of C's death or disability. I put away his puzzles and worry that he'll never use them again. I walk by a toy or object and worry that soon it will hold an echo of his memory, and I won't be able to hold him. I look at him and feel guilt and fear for the future. I love him so much, sometimes, when that love collides with my fears, it takes my breath away.
Thursday, September 13, 2012
Sometimes the fear is breath-taking
I'm often trying to corral unruly thoughts and fears of the future. We're two weeks from C's next open heart surgery and it is much harder than the first. I was dazed with exhaustion for the first surgery and that numbing cushion was truly a blessing. Now a days we get more sleep, so we haven't had that particular coping strategy.
Sunday, September 2, 2012
Health and Sanity update
After writing my last post and consulting with some brilliant women over on BBC, I decided to follow my gut and at least talk to the on call pediatrician. They told me basically what I had expected, which was I should at least take him in and get him looked over. We went to Children's Urgent Care and hung out for three hours. During that time they did check him out, we had a breathing treatment and X-Rays. They were concerned about heart failure or pneumonia.
In the end, we caught the very beginning of an ear infection in addition to the upper respiratory infection we already knew was an issue. They confirmed we made the right call this morning when we increased his inhaled steroid. The breathing treatment they gave allowed us to get back on top of his wheezing. Now we just need to keep on top of it. If his respiratory rate goes over 60, we are to go to the ER. It is down to 43 now. It was 56 when we were at urgent care earlier today.
C's temperature was hovering at normal when we got to urgent care, but was over 100 by the time we left. When we finally got him home, it was 101.6. A dose of Advil, a brief nap and his first dose of antibiotic settled him enough to eat a bit of food. Hopefully we'll catch up on calories lost in the next few days. As it stands, I suspect we lost our 4oz weight gain... I'm just hoping to stay over 23lbs.
In the end, we caught the very beginning of an ear infection in addition to the upper respiratory infection we already knew was an issue. They confirmed we made the right call this morning when we increased his inhaled steroid. The breathing treatment they gave allowed us to get back on top of his wheezing. Now we just need to keep on top of it. If his respiratory rate goes over 60, we are to go to the ER. It is down to 43 now. It was 56 when we were at urgent care earlier today.
C's temperature was hovering at normal when we got to urgent care, but was over 100 by the time we left. When we finally got him home, it was 101.6. A dose of Advil, a brief nap and his first dose of antibiotic settled him enough to eat a bit of food. Hopefully we'll catch up on calories lost in the next few days. As it stands, I suspect we lost our 4oz weight gain... I'm just hoping to stay over 23lbs.
I'm Tired of Being Terrified
As I write this post, C and his daddy are running around the house laughing and rough-housing. C has no idea that in 3.5 weeks he's going to be facing a very serious surgery. I have no way to tell him. It is beyond his current ability to understand. In some ways that's a good thing. But I can't stop imagining how confused and upset he's going to be when he wakes up in post op, in pain and scared with no idea why I handed him over to people who would hurt him like that.
Of course, that's not my biggest fear. My biggest fear is that he'll either wake up a completely different kid, or he won't wake up at all. I remind myself that the vast majority of children wake up just fine, but that doesn't really help. Strokes, brain damage and death crowd my subconscious with fears that break through anytime I drop my guard.
I have never thought of C as particularly medically complex, but now that I'm faced with explaining him to a surgical team that hasn't known him since birth, I find that he's got a bit more to him than I expected. We hope that his failure to thrive is directly related to his heart. We know that his kidney reflux is not. We hope that his reactive airway issues are related to RSV, but we are rapidly approaching the end of the 6 month window within which his repeated wheezing episdoes can be explained away. Once that window has closed, he'll officially have viral induced asthma.
We had to use his rescue inhaler last night at 1am and again this morning at 7. Our goal is to use the inhaler no more than once a week and no more than twice a month. That's the definition of controlled asthma. We are no where near that. We use the rescue inhaler every 4-6 hours for 3-5 days every time C gets a cold. That has been true since February 29th when C got his first round of steroids after contracting RSV. He's generally fine when he's up and running around. However at night, when he settles to sleep, he gets really junky and congested and he starts working harder and harder to breathe. They think some of this may be heart related as well. But chances are, regardless of all other issues, we're going to add the label viral induced asthma to his list of illnesses.
It is hard to hear his crackly and wheezy breathing. It reminds me how fragile life is and how easily it can be taken away. I'm scared that he will have respiratory issues again after this surgery. Last surgery he was on the vent for 6 days due to a pulmonary hypertensive crisis. C's new surgeon believes he has some degree of pulmonary hypertension stemming from his mitral valve leak. I don't know how that interacts with his frequent respiratory infections, wheezing and inflammation but it scares me. I am terrified that surgery will cause an asthma flare up. It is one of the many things that has me scared.
In a best case scenario, most of what we're experiencing with C will find its root cause in his heart function. Fixing his mitral valve will hopefully improve his ability to resist infection, give him some reserves for when he does get sick, bring back his appetite, decrease his caloric needs, enable him to gain weight and decrease his overall respiratory distress enabling his lungs to settle down. If that is true and we are correc that C has outgrown his kidney issues then we could be in a whole new world. We may get to the point where we have only one specialist. We'll always have cardiology. But maybe we can have just that.
We were discharged from urology last week with a caveat that we must return if he has a UTI. We chose not to do any testing to confirm the VUR was gone because I didn't want to add any tests that weren't medically required. I am keeping him on prophylactic antibiotics until after his OHS. I didn't want to risk his VUR still being present and getting a bladder or kidney infection that would delay surgery. We'll discontinue the antibiotics when we get home from surgery.
I'm honestly not clear who to talk to on this. My pediatrician, the local cardiologist, the out of state coordinator for Boston or the surgeon in Boston. I am leaning toward e-mailing his surgeon, but I'm not at all sure that is the appropriate course. On the other hand, I want to be 100% sure he knows and acknowledges that C has a cold 3.5 weeks before surgery, that it caused an asthma flair up and that we are fighting reactive airway issues. That seems like important information for him to know.
Of course, that's not my biggest fear. My biggest fear is that he'll either wake up a completely different kid, or he won't wake up at all. I remind myself that the vast majority of children wake up just fine, but that doesn't really help. Strokes, brain damage and death crowd my subconscious with fears that break through anytime I drop my guard.
I have never thought of C as particularly medically complex, but now that I'm faced with explaining him to a surgical team that hasn't known him since birth, I find that he's got a bit more to him than I expected. We hope that his failure to thrive is directly related to his heart. We know that his kidney reflux is not. We hope that his reactive airway issues are related to RSV, but we are rapidly approaching the end of the 6 month window within which his repeated wheezing episdoes can be explained away. Once that window has closed, he'll officially have viral induced asthma.
We had to use his rescue inhaler last night at 1am and again this morning at 7. Our goal is to use the inhaler no more than once a week and no more than twice a month. That's the definition of controlled asthma. We are no where near that. We use the rescue inhaler every 4-6 hours for 3-5 days every time C gets a cold. That has been true since February 29th when C got his first round of steroids after contracting RSV. He's generally fine when he's up and running around. However at night, when he settles to sleep, he gets really junky and congested and he starts working harder and harder to breathe. They think some of this may be heart related as well. But chances are, regardless of all other issues, we're going to add the label viral induced asthma to his list of illnesses.
It is hard to hear his crackly and wheezy breathing. It reminds me how fragile life is and how easily it can be taken away. I'm scared that he will have respiratory issues again after this surgery. Last surgery he was on the vent for 6 days due to a pulmonary hypertensive crisis. C's new surgeon believes he has some degree of pulmonary hypertension stemming from his mitral valve leak. I don't know how that interacts with his frequent respiratory infections, wheezing and inflammation but it scares me. I am terrified that surgery will cause an asthma flare up. It is one of the many things that has me scared.
In a best case scenario, most of what we're experiencing with C will find its root cause in his heart function. Fixing his mitral valve will hopefully improve his ability to resist infection, give him some reserves for when he does get sick, bring back his appetite, decrease his caloric needs, enable him to gain weight and decrease his overall respiratory distress enabling his lungs to settle down. If that is true and we are correc that C has outgrown his kidney issues then we could be in a whole new world. We may get to the point where we have only one specialist. We'll always have cardiology. But maybe we can have just that.
We were discharged from urology last week with a caveat that we must return if he has a UTI. We chose not to do any testing to confirm the VUR was gone because I didn't want to add any tests that weren't medically required. I am keeping him on prophylactic antibiotics until after his OHS. I didn't want to risk his VUR still being present and getting a bladder or kidney infection that would delay surgery. We'll discontinue the antibiotics when we get home from surgery.
I'm honestly not clear who to talk to on this. My pediatrician, the local cardiologist, the out of state coordinator for Boston or the surgeon in Boston. I am leaning toward e-mailing his surgeon, but I'm not at all sure that is the appropriate course. On the other hand, I want to be 100% sure he knows and acknowledges that C has a cold 3.5 weeks before surgery, that it caused an asthma flair up and that we are fighting reactive airway issues. That seems like important information for him to know.
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