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.)
Showing posts with label doctors. Show all posts
Showing posts with label doctors. Show all posts
Tuesday, October 25, 2011
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. |
 |
| 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. |
 |
| 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, February 19, 2011
Things I Didn't Know About Medicine
Since I am not a part of the medical community, but I have a lot of experience dealing with them, I thought I'd share some of my insights today with a post about things I've learned about the medical community.
One thing that I didn't know before the Dancing Queen was born is that medicine is more of an art than a science. Generally, if you get sick, you see a doctor, they give you a medicine and you get better after a couple of days or weeks. Or, you have surgery, get it fixed, heal from that and you go on with your life. At least that is what I thought before the Dancing Queen was born. Everything with her is the edge of knowledge. There are no answers, but lots of questions. Right now, they are treating the Dancing Queen with an antibiotic she has never used before in hopes that we can get rid of the infection she has brewing on top of the virus that has got her locked in intensive care all week. The doctors don't know if it will work and if it doesn't, they'll remove the tubes from ears and hope that works. All guesses with no real answers.
The docs don't know why the Dancing Queen won't eat (even when healthy). They don't know how to fix her main heart/lung defects now. The doctors' solution is hope she grows, which they have been telling me since I was 20 weeks pregnant with the Dancing Queen. She hasn't grown much in that time, so I don't know how they expect her to grow. Medicine is a guessing game, yet doctors act like the hold the answer to everything in their hands.
The last thing that I will share today about what I didn't know about medicine is that the medical community doesn't multi-task well. By that, I mean medical staff look for one cause to a problem. When they find that cause, they don't consider anything else. I find this very odd because it has always been my experience that multiple things occur at once. I can have a splinter in my thumb and a broken leg. Both could make me miserable. Yet, once the doctors isolated the Dancing Queen's virus that was attacking her respiratory system, they wouldn't consider that anything else was attacking her ears, until days of my pushing. We've had this problem before, especially after surgery. Open heart surgery affects all of the systems of the body, not just the heart and lungs. Yet, after all of the Dancing Queen's surgeries, when she has had GI problems, the docs won't listen to me when I ask them to get a GI consult.
This is something else I didn't know about the medical community. They all specialize these days, but nobody talks to each other. We are lucky that the Dancing Queen's primary specialists are all in the same office so they can talk with each other, but overall, that doesn't happen. As an attorney, when I have an accounting issue in a case, I consult an accountant. If the case involves power plants, I talk to power plant engineers. If I have a medical issue, I talk to a doctor in that field. Yet, in the medical world, the different specialties only talk to each other when pushed.
Now none of you will have to spend time in the hospital to learn these lessons. As an aside, I haven't posted in a couple of days due to the continued hospitalization of the Dancing Queen and my own illness. It is hard to do the whole hospital/work/home thing healthy, but even harder sick. I crashed for 10 straight hours last night and thought I would feel a little better this morning, but not much. Luckily, my husband is freaking amazing because, after he spends some quality time with TRex, he is coming back to the hospital so I can sleep at home again. It looks like the Dancing Queen will be released from the hospital tomorrow, so that helps. It will allow the Mad Scientist naptime tomorrow.
One of the things I never knew before the Dancing Queen was born is that sitting at a hospital bedside is extraordinarily exhausting. You wouldn't think it because you mostly just sit, but the worry alone is tiring. To that, you add the frustration from trying to get a sick child to eat or drink and try keeping a toddler calm when medical staff comes in or worse, keeping them calm during procedures. It takes everything in your being to keep a straight face and be reassuring as your child is poked and prodded for the upteenth time. It is all tiring. But, since we can't leave the room even to pee because the Dancing Queen will freak out, there is no such thing as regular drinks and meals. When we do escape for food, it is fast food/hospital food. Not good, nor fulfilling and generally leaves you more tired than if you hadn't eaten. Powdered coffee in a styrofoam cup doesn't lead to the alertness that real coffee does either. The Mad Scientist and I generally do 24 hour shifts, switching places in the evening so that the person who has likely been awake for 24 hours can go home and sleep, then work the next day and come back for their 24 hour shift after that. It isn't great, but allows both of us to go to the hospital and see both kids each day. More things I didn't know.
One thing that I didn't know before the Dancing Queen was born is that medicine is more of an art than a science. Generally, if you get sick, you see a doctor, they give you a medicine and you get better after a couple of days or weeks. Or, you have surgery, get it fixed, heal from that and you go on with your life. At least that is what I thought before the Dancing Queen was born. Everything with her is the edge of knowledge. There are no answers, but lots of questions. Right now, they are treating the Dancing Queen with an antibiotic she has never used before in hopes that we can get rid of the infection she has brewing on top of the virus that has got her locked in intensive care all week. The doctors don't know if it will work and if it doesn't, they'll remove the tubes from ears and hope that works. All guesses with no real answers.
The docs don't know why the Dancing Queen won't eat (even when healthy). They don't know how to fix her main heart/lung defects now. The doctors' solution is hope she grows, which they have been telling me since I was 20 weeks pregnant with the Dancing Queen. She hasn't grown much in that time, so I don't know how they expect her to grow. Medicine is a guessing game, yet doctors act like the hold the answer to everything in their hands.
The last thing that I will share today about what I didn't know about medicine is that the medical community doesn't multi-task well. By that, I mean medical staff look for one cause to a problem. When they find that cause, they don't consider anything else. I find this very odd because it has always been my experience that multiple things occur at once. I can have a splinter in my thumb and a broken leg. Both could make me miserable. Yet, once the doctors isolated the Dancing Queen's virus that was attacking her respiratory system, they wouldn't consider that anything else was attacking her ears, until days of my pushing. We've had this problem before, especially after surgery. Open heart surgery affects all of the systems of the body, not just the heart and lungs. Yet, after all of the Dancing Queen's surgeries, when she has had GI problems, the docs won't listen to me when I ask them to get a GI consult.
This is something else I didn't know about the medical community. They all specialize these days, but nobody talks to each other. We are lucky that the Dancing Queen's primary specialists are all in the same office so they can talk with each other, but overall, that doesn't happen. As an attorney, when I have an accounting issue in a case, I consult an accountant. If the case involves power plants, I talk to power plant engineers. If I have a medical issue, I talk to a doctor in that field. Yet, in the medical world, the different specialties only talk to each other when pushed.
Now none of you will have to spend time in the hospital to learn these lessons. As an aside, I haven't posted in a couple of days due to the continued hospitalization of the Dancing Queen and my own illness. It is hard to do the whole hospital/work/home thing healthy, but even harder sick. I crashed for 10 straight hours last night and thought I would feel a little better this morning, but not much. Luckily, my husband is freaking amazing because, after he spends some quality time with TRex, he is coming back to the hospital so I can sleep at home again. It looks like the Dancing Queen will be released from the hospital tomorrow, so that helps. It will allow the Mad Scientist naptime tomorrow.
One of the things I never knew before the Dancing Queen was born is that sitting at a hospital bedside is extraordinarily exhausting. You wouldn't think it because you mostly just sit, but the worry alone is tiring. To that, you add the frustration from trying to get a sick child to eat or drink and try keeping a toddler calm when medical staff comes in or worse, keeping them calm during procedures. It takes everything in your being to keep a straight face and be reassuring as your child is poked and prodded for the upteenth time. It is all tiring. But, since we can't leave the room even to pee because the Dancing Queen will freak out, there is no such thing as regular drinks and meals. When we do escape for food, it is fast food/hospital food. Not good, nor fulfilling and generally leaves you more tired than if you hadn't eaten. Powdered coffee in a styrofoam cup doesn't lead to the alertness that real coffee does either. The Mad Scientist and I generally do 24 hour shifts, switching places in the evening so that the person who has likely been awake for 24 hours can go home and sleep, then work the next day and come back for their 24 hour shift after that. It isn't great, but allows both of us to go to the hospital and see both kids each day. More things I didn't know.
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