I made an Edit to remove links because the post about baby Claire is gone from the other end of the link. I don't know how baby Claire is today because I didn't keep checking the links over the years. It made me to emotional to go back and read again... But my point that sending cards can put a little extra "bright" in someone's day when they are most in need of it is still valid. If you know someone who needs a card, send one, or someone who needs a phone call, pick up the phone and dial. The amount of effort you are giving is worth ten times that (at least) to the person on the other end.
Please go here and read about baby Claire, who was born with an extremely rare heart condition (same link as on Crystal's page, if you want to see what the problem is while you are still here), and her mom Jen. There's even a photo of darling little Claire.
Crystal (I'm sending you to her blog) has a Donate button at the top left if you wish to help with finances, and has posted an address so you can send a postcard with good wishes.
When Margret was in the hospital this summer, the cards she received brightened her day. Jen can certainly use a little extra "bright" in her days.
Yes, and read the comments there, too. Don't feel a need to apologize if all you can offer are prayers. good wishes, good vibrations or the like. It all helps.
What? Why are you still here? Go on, Claire's picture is waiting for you there!
Showing posts with label medical needs. Show all posts
Showing posts with label medical needs. Show all posts
Tuesday, October 28, 2008
Saturday, October 25, 2008
More Time. Better Time.
I am thankful, very thankful, to have had as many years with my daughter present in my life as I did.
In spite of the pediatrician at the hospital where she was born, who told me she would die by age two, or if she reached her second birthday she would die before age ten, she lived to be an adult.
Her health declined and she wanted to have her heart repaired. The surgeon, after his office played phone tag with me all summer in 1999, left a message stating simply that she was not a candidate for surgery. His office and I did the phone tag thing because I was back and forth to Florida to deal with my mother's affairs, and especially her house, which needed to be cleared out so it could be sold. I spent a total of eight weeks there, in one and two week blocks. After my return, I could not elicit a reason from his office staff as to why she was not a candidate. We did find out the reason when, in January, we saw the doctor who gave her her diagnosis of Eisenmenger's syndrome. He explained that for many years surgeons would repair the heart of an older child, only to have the child die after successful surgery. As soon as they figured out the surgery was causing these deaths, they stopped. After that, only children young enough not to have the permanent changes in their lungs caused by the heart defects were considered for repair. He's also the one who said she should see the tranplant people, for completeness sake.
Margret was prescribed supplementary oxygen in June of 2000. At that time her 'normal' saturations were in the 80s. The low saturations went a long way toward explaining why she had difficulty following directions, and considering whether she should act on an impulse or not. She lost one of her volunteer postings earlier the same year for not following directions. I am sure it would have helped if she had been given oxygen earlier, but who knew? I certainly didn't. She managed well enough with the day to day minutiae of her life that no red flags went up for me or for her doctors. There were no obvious symptoms as her saturations dropped. A cardiologist opined that the drop was slow enough for her to learn to compensate, so he, and others, did not pick up on it. She lost another volunteer posting after starting on the oxygen. The director did not want a volunteer on oxygen to be in, or anywhere near, their kitchen.
With the other things happening that year, it was October when she first saw the transplant doctor to see if she ought to be considered. He thought she might be eligible for the transplant program, so he scheduled her to see the people at TUH for an evaluation the week after Thanksgiving. While she was off having a test where they didn't need Mom trailing along, one of the doctors stopped by her room looking for her. He found me instead. Realizing how uncomfortable I was asking about her death with her in the room, I took that moment, "What do you think of her life expectancy without a transplant?"
He thought about it for a very long moment and replied, "At her current rate of decline, I give her two years, maybe a little less."
She didn't have the lung transplant. Insurance didn't want to pay for a procedure done so seldom, borrow a pediatric cardiac surgeon from the children's hospital next door (had they ever done that before? I don't think so.) to repair her heart, and give her new lungs.
I can almost hear some of you wondering, "Why a pediatric cardiac surgeon?"
Answer: Unless you are a pediatric cardiac surgeon, you have never had to repair the sort of heart defect Margret was born with. Most folks with that type of defect have either had it repaired as an infant, or died before reaching adulthood, so a typical cardiac surgeon (for adults) has never done this repair.
Along with that, when Margret had an echocardiogram done, the techs at the adult hospital didn't know how to interpret what they were seeing, so the docs sent her next door to the children's hospital to have one done there. The chief of pediatric cardiology himself did her echocardiogram. He also offered us an apology, on behalf of his entire profession, that surgeons around the time of Margret's birth did not offer to repair a heart defect if the heart in question belonged to a child with Down syndrome.
What I wanted for her was the best quality of life with the least invasive treatments, so I was not at all unhappy when the doctor at the next hospital said, "She doesn't need a transplant. We have drugs to manage pulmonary hypertension."
The medications she started on there made her quality of life much better. See also A Lot of Hope The main medication was nifedipine, a calcium channel blocker, which relaxes smooth muscle so it widens arteries and veins. For Margret especially, with her pulmonary hypertension, it allowed more blood to flow through her lungs.
That specialist also believed in treating for CHF (congestive heart failure) before it became obvious. She said her patients were more comfortable, for longer, with treatment. Margret said, "Comfortable is good!" She treated Margret with a diuretic (furosemide) to prevent the fluid build up that is CHF.
Her low oxygen saturations encouraged her body to make extra red cells for oxygen transport. If you move to a higher altitude, your body will do something similar to compensate for the lower partial pressure of oxygen there. It's called the High Altitude Adaptation, and it's what allows people to live anywhere from sea level to high in the Andes. (and other mountain ranges, of course) The reaction by Margret's body was extreme, so her platelets were vastly outnumbered, as is true of many people with PH. On the other hand, the edges of the holes in her heart are rough, and encourage platelets to stick, and start the clotting process. So she is at risk both for random clots and uncontrollable bleeding. The clotting being more dangerous, the doctor prescribed a blood thinner.
This specialist was also hopeful about life expectancy. She told Margret that as long as she responded well to her medications, and nothing unforseen happened, she could live a long time. How long? we asked. Well into her forties, she said.
Some years later, when she was again doing less well, another specialist put her on Revatio to help control the PH. The difference it made was remarkable. From being quiet, she returned to chatty self, and from an "Anything will do," attitude, she recovered her ability to be choosy, and sometimes even to argue with me. You would not believe how happy that first argument made me. We argued about whether we would have ice cream for dessert. Yes. She won.
All these medications, and others, improved her quality of life, and increased the time we had together.
I knew she was likely to die before me, but I wanted her to grow old and let me die first. No parent should have to cope with the death of their child. There is a part of me (selfish, selfish!) that still insists we should have had more years together, more birthdays, more holidays, more road trips. More everything, more time.
We did the best we could, she and I. I sometimes wonder if my best was good enough, but her best was absolutely perfect. She enjoyed her family, and they enjoyed her. She enjoyed being around people and chatting with them, and her volunteering allowed her to give of herself. Giving was important to her, and making the world a better place. She did that.
In spite of the pediatrician at the hospital where she was born, who told me she would die by age two, or if she reached her second birthday she would die before age ten, she lived to be an adult.
Her health declined and she wanted to have her heart repaired. The surgeon, after his office played phone tag with me all summer in 1999, left a message stating simply that she was not a candidate for surgery. His office and I did the phone tag thing because I was back and forth to Florida to deal with my mother's affairs, and especially her house, which needed to be cleared out so it could be sold. I spent a total of eight weeks there, in one and two week blocks. After my return, I could not elicit a reason from his office staff as to why she was not a candidate. We did find out the reason when, in January, we saw the doctor who gave her her diagnosis of Eisenmenger's syndrome. He explained that for many years surgeons would repair the heart of an older child, only to have the child die after successful surgery. As soon as they figured out the surgery was causing these deaths, they stopped. After that, only children young enough not to have the permanent changes in their lungs caused by the heart defects were considered for repair. He's also the one who said she should see the tranplant people, for completeness sake.
Margret was prescribed supplementary oxygen in June of 2000. At that time her 'normal' saturations were in the 80s. The low saturations went a long way toward explaining why she had difficulty following directions, and considering whether she should act on an impulse or not. She lost one of her volunteer postings earlier the same year for not following directions. I am sure it would have helped if she had been given oxygen earlier, but who knew? I certainly didn't. She managed well enough with the day to day minutiae of her life that no red flags went up for me or for her doctors. There were no obvious symptoms as her saturations dropped. A cardiologist opined that the drop was slow enough for her to learn to compensate, so he, and others, did not pick up on it. She lost another volunteer posting after starting on the oxygen. The director did not want a volunteer on oxygen to be in, or anywhere near, their kitchen.
With the other things happening that year, it was October when she first saw the transplant doctor to see if she ought to be considered. He thought she might be eligible for the transplant program, so he scheduled her to see the people at TUH for an evaluation the week after Thanksgiving. While she was off having a test where they didn't need Mom trailing along, one of the doctors stopped by her room looking for her. He found me instead. Realizing how uncomfortable I was asking about her death with her in the room, I took that moment, "What do you think of her life expectancy without a transplant?"
He thought about it for a very long moment and replied, "At her current rate of decline, I give her two years, maybe a little less."
She didn't have the lung transplant. Insurance didn't want to pay for a procedure done so seldom, borrow a pediatric cardiac surgeon from the children's hospital next door (had they ever done that before? I don't think so.) to repair her heart, and give her new lungs.
I can almost hear some of you wondering, "Why a pediatric cardiac surgeon?"
Answer: Unless you are a pediatric cardiac surgeon, you have never had to repair the sort of heart defect Margret was born with. Most folks with that type of defect have either had it repaired as an infant, or died before reaching adulthood, so a typical cardiac surgeon (for adults) has never done this repair.
Along with that, when Margret had an echocardiogram done, the techs at the adult hospital didn't know how to interpret what they were seeing, so the docs sent her next door to the children's hospital to have one done there. The chief of pediatric cardiology himself did her echocardiogram. He also offered us an apology, on behalf of his entire profession, that surgeons around the time of Margret's birth did not offer to repair a heart defect if the heart in question belonged to a child with Down syndrome.
What I wanted for her was the best quality of life with the least invasive treatments, so I was not at all unhappy when the doctor at the next hospital said, "She doesn't need a transplant. We have drugs to manage pulmonary hypertension."
The medications she started on there made her quality of life much better. See also A Lot of Hope The main medication was nifedipine, a calcium channel blocker, which relaxes smooth muscle so it widens arteries and veins. For Margret especially, with her pulmonary hypertension, it allowed more blood to flow through her lungs.
That specialist also believed in treating for CHF (congestive heart failure) before it became obvious. She said her patients were more comfortable, for longer, with treatment. Margret said, "Comfortable is good!" She treated Margret with a diuretic (furosemide) to prevent the fluid build up that is CHF.
Her low oxygen saturations encouraged her body to make extra red cells for oxygen transport. If you move to a higher altitude, your body will do something similar to compensate for the lower partial pressure of oxygen there. It's called the High Altitude Adaptation, and it's what allows people to live anywhere from sea level to high in the Andes. (and other mountain ranges, of course) The reaction by Margret's body was extreme, so her platelets were vastly outnumbered, as is true of many people with PH. On the other hand, the edges of the holes in her heart are rough, and encourage platelets to stick, and start the clotting process. So she is at risk both for random clots and uncontrollable bleeding. The clotting being more dangerous, the doctor prescribed a blood thinner.
This specialist was also hopeful about life expectancy. She told Margret that as long as she responded well to her medications, and nothing unforseen happened, she could live a long time. How long? we asked. Well into her forties, she said.
Some years later, when she was again doing less well, another specialist put her on Revatio to help control the PH. The difference it made was remarkable. From being quiet, she returned to chatty self, and from an "Anything will do," attitude, she recovered her ability to be choosy, and sometimes even to argue with me. You would not believe how happy that first argument made me. We argued about whether we would have ice cream for dessert. Yes. She won.
All these medications, and others, improved her quality of life, and increased the time we had together.
I knew she was likely to die before me, but I wanted her to grow old and let me die first. No parent should have to cope with the death of their child. There is a part of me (selfish, selfish!) that still insists we should have had more years together, more birthdays, more holidays, more road trips. More everything, more time.
We did the best we could, she and I. I sometimes wonder if my best was good enough, but her best was absolutely perfect. She enjoyed her family, and they enjoyed her. She enjoyed being around people and chatting with them, and her volunteering allowed her to give of herself. Giving was important to her, and making the world a better place. She did that.
Thursday, October 16, 2008
A Lot of Hope
In 1999 Margret got tired of being tired. She decided she wanted to get her heart repaired, at long last, but the pediatric cardiac surgeon suggested by our family doc said she was not a candidate for surgery.
Upset that he would not explain further, I hunted the internet for a doctor specializing in adults with unrepaired CHDs, and found one at Jefferson. We got an appointment and he told Margret that she had Eisenmenger's Syndrome. Finally, in January 2000, we had a diagnosis! He said the reason she was not a candidate for surgery to repair her heart is because changes in the lungs caused by the heart defect become permanent, and are not compatible with a repair. In other words, if she got her heart fixed, she would die. He encouraged us to consult with the tranplant doctors at Temple. It was a year of catastrophes, so we did not get with the transplant people until October. Her evaluation was scheduled for just after Thanksgiving. My Mom died Halloween morning, and we buried her with Dad on November 6th.
Margret had been put on oxygen in June, because I noticed her feet turned from their usual purplish color to a dirty white when she walked around. No one had thought to check her oxygen saturations before May, because she seemed to be doing well. I had no idea. Her saturations were in the low 80s, and 6 liters of oxygen only brought them up to the high 80s.
The transplant folks originally thought an 'en bloc' of heart and lungs would be a good idea. They finally settled on a plan of giving her new lungs, and borrowing a pediatric cardiac surgeon from the children's hospital next door to repair her own heart. Our insurance said no. Given a choice of fighting the insurance or going to a different hospital, we went.
The doctor there said there was medication that helped with the PH. I'd asked the transplant guys about medications, and they tossed it off with, "Oh, it's experimental, we only give it to our people at the very end to help them hold on so they can get new lungs." The new doctor explained there were THREE medications she found useful, and how she did a challenge with each medication while measuring the pressures on both sides of the heart through catheters to decide which medication was best, and what dosage would be most effective. I explained it again, in little words, to make sure Margret and I both understood. Then Margret decided she would try medication. It was a week in the hospital, the first day in the cath lab, that night in CICU, and the rest of the week in the cardiac stepdown unit while the doctor adjusted the doses of the other medications she would be taking with the main one.
When we went home, Margret trotted right up the stairs to her room, not stopping once! I had tears in my eyes, because she used to stop 3 times on the way up the stairs to rest, finally clinging to the rail at the top while deciding if she had to use the bathroom, or if she could just go plop on her bed.
Upset that he would not explain further, I hunted the internet for a doctor specializing in adults with unrepaired CHDs, and found one at Jefferson. We got an appointment and he told Margret that she had Eisenmenger's Syndrome. Finally, in January 2000, we had a diagnosis! He said the reason she was not a candidate for surgery to repair her heart is because changes in the lungs caused by the heart defect become permanent, and are not compatible with a repair. In other words, if she got her heart fixed, she would die. He encouraged us to consult with the tranplant doctors at Temple. It was a year of catastrophes, so we did not get with the transplant people until October. Her evaluation was scheduled for just after Thanksgiving. My Mom died Halloween morning, and we buried her with Dad on November 6th.
Margret had been put on oxygen in June, because I noticed her feet turned from their usual purplish color to a dirty white when she walked around. No one had thought to check her oxygen saturations before May, because she seemed to be doing well. I had no idea. Her saturations were in the low 80s, and 6 liters of oxygen only brought them up to the high 80s.
The transplant folks originally thought an 'en bloc' of heart and lungs would be a good idea. They finally settled on a plan of giving her new lungs, and borrowing a pediatric cardiac surgeon from the children's hospital next door to repair her own heart. Our insurance said no. Given a choice of fighting the insurance or going to a different hospital, we went.
The doctor there said there was medication that helped with the PH. I'd asked the transplant guys about medications, and they tossed it off with, "Oh, it's experimental, we only give it to our people at the very end to help them hold on so they can get new lungs." The new doctor explained there were THREE medications she found useful, and how she did a challenge with each medication while measuring the pressures on both sides of the heart through catheters to decide which medication was best, and what dosage would be most effective. I explained it again, in little words, to make sure Margret and I both understood. Then Margret decided she would try medication. It was a week in the hospital, the first day in the cath lab, that night in CICU, and the rest of the week in the cardiac stepdown unit while the doctor adjusted the doses of the other medications she would be taking with the main one.
When we went home, Margret trotted right up the stairs to her room, not stopping once! I had tears in my eyes, because she used to stop 3 times on the way up the stairs to rest, finally clinging to the rail at the top while deciding if she had to use the bathroom, or if she could just go plop on her bed.
Wednesday, October 8, 2008
The Mask and the Terror
When Margret had her crash the first night, her lungs were so bad the doctor warned me just the act of placing a breathing tube could cause a heart attack: No more Margret. So I asked him to try without the tube. She was on 100 per cent oxygen, with nitric oxide, to raise her oxygen saturations. She was not tubed. That worked, for a while, with a nebulizer mask.
Her sats kept dropping, so they tried a ventilator with a FACE MASK, not an endotracheal tube. It took several tries to find a mask that fit decently. Third time's the charm. That mask's blue color made it hard to read her lips through it. The mask had to be tightly strapped to her face, or leakage would cause several different kinds of alarms on the vent, as well as squeaks, whistles and fwubby noises that variously annoyed and alarmed her. She had to talk very slowly and choose her words with care to be understood from behind the mask. Sometimes even with her care, I couldn't tell what she said, but "I love you, Mom," was an easy one.
The skin on her nose bridge started breaking down from mask pressure. At this point the vent was set to 10-15, meaning the baseline pressure was 10 psi, and added 15 more psi to help on an inhale.
The Respiratory guy went hunting for a nasal pillow style that might spare her poor hurting nose. The ventilator they used with her was not made to work with masks having exhaust ports; the vent detected lower than assigned pressure, and raised the output pressure to reach the assigned pressure. Problem: the nasal pillow styles have exhaust ports.
The RTs patched over the 8 small exhaust holes, and fit the nasal prongs to her nose. This nasal pillow mask required a chinstrap, elasticky, about 2.5 inches wide, fastened by velcro, as part of the head gear. It looked much like an old fashioned toothache band on her.
Margret didn't like it much, but better, I think, than the full face mask. At least at first.
Her movements and attempts to talk caused the chinstrap to precess anticlockwise around her face, to the point where the nasal part slanted sharply from horizontal. The nurse, the RT and I were talking to Marg. Then I said the angle looked uncomfortable, and suggested the device be repositioned. The RT unfastened and started repositioning. About now some unplanned combination of movements slipped one nasal prong out of Margret's nose, spilling 25 psi of pure oxygen across her open eye. Margret jerked back, ripped the nasal mask off her face, threw it as hard as she could, fought frantically and began turning blue.
As all the vent and monitor alarms started yelling at once, I grabbed her hands, looked into her eyes, and tried to talk her down to calm. Several free nurses and RTs dashed into the room, the big RT who had engineered the patch ending at her head. The others stopped, to be ready if more hands were needed. He grabbed the blue mask off the top of the vent and the vent tubing.
I spared a quick glance at the monitor - sats 44 and dropping. I talked and talked, holding tight to her fighting hands. Her face turned bluer and bluer, verging on deep plum.
Mask attached to delivery tube, the RT held it to her face, and with help, whose I don't know, I wasn't looking, fastened it securely. Focused on Margret, staring into tiny pupilled eyes, I believed in that moment she had no idea who I was except a person keeping her from tearing the mask off anew.
On vent assisted oxygen once more, her color crept slowly from purple to pink, her sats rising into the upper seventies. Intelligence and the Margret I knew leaked back into her eyes. I kept talking to her, and she stopped fighting to free her hands.
Time from ripping the mask off and flinging it to being back behind the blue mask perhaps 30 seconds, maybe less.
Mom's terror, TOTAL.
Someone asked if I was OK. I said yes. The shaking didn't start until after it was all over and I had stepped out into the hall. Marg's nurse asked me if I was OK, and I said, "No, but give me a little time."
Later, talking to Margret's doctor, I learned that her sats had fallen to 36. Yup. Terror. Yes, I tend to hold it all together when the chips are down. I'll have my meltdown later, when it's safe to do.
Her sats kept dropping, so they tried a ventilator with a FACE MASK, not an endotracheal tube. It took several tries to find a mask that fit decently. Third time's the charm. That mask's blue color made it hard to read her lips through it. The mask had to be tightly strapped to her face, or leakage would cause several different kinds of alarms on the vent, as well as squeaks, whistles and fwubby noises that variously annoyed and alarmed her. She had to talk very slowly and choose her words with care to be understood from behind the mask. Sometimes even with her care, I couldn't tell what she said, but "I love you, Mom," was an easy one.
The skin on her nose bridge started breaking down from mask pressure. At this point the vent was set to 10-15, meaning the baseline pressure was 10 psi, and added 15 more psi to help on an inhale.
The Respiratory guy went hunting for a nasal pillow style that might spare her poor hurting nose. The ventilator they used with her was not made to work with masks having exhaust ports; the vent detected lower than assigned pressure, and raised the output pressure to reach the assigned pressure. Problem: the nasal pillow styles have exhaust ports.
The RTs patched over the 8 small exhaust holes, and fit the nasal prongs to her nose. This nasal pillow mask required a chinstrap, elasticky, about 2.5 inches wide, fastened by velcro, as part of the head gear. It looked much like an old fashioned toothache band on her.
Margret didn't like it much, but better, I think, than the full face mask. At least at first.
Her movements and attempts to talk caused the chinstrap to precess anticlockwise around her face, to the point where the nasal part slanted sharply from horizontal. The nurse, the RT and I were talking to Marg. Then I said the angle looked uncomfortable, and suggested the device be repositioned. The RT unfastened and started repositioning. About now some unplanned combination of movements slipped one nasal prong out of Margret's nose, spilling 25 psi of pure oxygen across her open eye. Margret jerked back, ripped the nasal mask off her face, threw it as hard as she could, fought frantically and began turning blue.
As all the vent and monitor alarms started yelling at once, I grabbed her hands, looked into her eyes, and tried to talk her down to calm. Several free nurses and RTs dashed into the room, the big RT who had engineered the patch ending at her head. The others stopped, to be ready if more hands were needed. He grabbed the blue mask off the top of the vent and the vent tubing.
I spared a quick glance at the monitor - sats 44 and dropping. I talked and talked, holding tight to her fighting hands. Her face turned bluer and bluer, verging on deep plum.
Mask attached to delivery tube, the RT held it to her face, and with help, whose I don't know, I wasn't looking, fastened it securely. Focused on Margret, staring into tiny pupilled eyes, I believed in that moment she had no idea who I was except a person keeping her from tearing the mask off anew.
On vent assisted oxygen once more, her color crept slowly from purple to pink, her sats rising into the upper seventies. Intelligence and the Margret I knew leaked back into her eyes. I kept talking to her, and she stopped fighting to free her hands.
Time from ripping the mask off and flinging it to being back behind the blue mask perhaps 30 seconds, maybe less.
Mom's terror, TOTAL.
Someone asked if I was OK. I said yes. The shaking didn't start until after it was all over and I had stepped out into the hall. Marg's nurse asked me if I was OK, and I said, "No, but give me a little time."
Later, talking to Margret's doctor, I learned that her sats had fallen to 36. Yup. Terror. Yes, I tend to hold it all together when the chips are down. I'll have my meltdown later, when it's safe to do.
Sunday, September 28, 2008
You Know You are The Parent...
Tammy, of Praying for Parker, put up a list of how you know you are the parent of a child with special needs here
I thought I'd put the rest of my list here, since as soon as I clicked Submit Comment over there, I thought of half a dozen more things to add.
You know you are the parent of a child with special needs when:
You are pulling a sled with your one year old, your three year old and your five year old, all giggling... the five year old is in the middle with the one year old held snugly in her lap, and the three year old behind her holding on tight to make sure they don't fall off...
and a stranger walks up to you and says, What darling twins you have! And the baby is adorable!
A new doctor asks you where you took your medical studies.
At appointments where a form wants you to list the medications your child is currently taking, you have your child pull out a file card, laminated in clear packing tape, that she carries on her person at all times, and ask the receptionist, "Can you make a copy of this to attach to the form? It'll take less time, and you'll be able to read it much easier than if I copy it out longhand." And you have them copy both sides because the other side has her name, and 'current as of...' with the most recent revised date.
Your child forgets to take her purse with her to her program one day. You spent all day half hysterical because what if there was an accident, and your child was not able to tell the paramedics about her special needs and what drugs NOT to give her? You decide to sign up for Medic Alert, and the relief you feel when you clasp the bracelet around daughter's wrist is all out of proportion to that small action.
You call your doctor on a weekend, and leave a message with the answering service. Twenty minutes later your phone rings. It's one of the partners, and he says, "Tell me what's up." You list the symptoms, cough productive of green sputum, temp of 99.2F, lethargy, whinyness and say you think your child needs an antibiotic before this progresses to bronchitis. The doctor asks you what antibiotic your child responds best to, and then after you tell him, says, "I'll call it right in."
You know the phone number of your pharmacy by heart. And know the phone number of your PCP office by heart too.
You call your primary care doctor, sounding worried, and the conversation goes like this:
Me, "I don't like the way her cough sounds. She needs to be seen today, can you get her in?"
Nurse, "How soon can you get here?"
Me, "We can be there in twenty-five minutes."
Nurse, "We'll squeeze you in. See you when you get here."
*note* Our primary care doctor has Sick Call in the afternoon, to take care of people who need to be seen the same day. You have to take whatever doctor is available, but that's ok because all the doctors in the practice know your child. Sometimes Sick Call is full and you have to wait until the next day, but if it's really urgent they'll squeeze you in.
Your child lies dying, much too young, and for a moment, amidst the terrible pain of it all, you mind is filled with thankfulness that the doctors were able to help her hold on until her sisters could get here from the opposite coast, and from another state far away, so your daughters can all be together again for a little while longer.
I thought I'd put the rest of my list here, since as soon as I clicked Submit Comment over there, I thought of half a dozen more things to add.
You know you are the parent of a child with special needs when:
You are pulling a sled with your one year old, your three year old and your five year old, all giggling... the five year old is in the middle with the one year old held snugly in her lap, and the three year old behind her holding on tight to make sure they don't fall off...
and a stranger walks up to you and says, What darling twins you have! And the baby is adorable!
A new doctor asks you where you took your medical studies.
At appointments where a form wants you to list the medications your child is currently taking, you have your child pull out a file card, laminated in clear packing tape, that she carries on her person at all times, and ask the receptionist, "Can you make a copy of this to attach to the form? It'll take less time, and you'll be able to read it much easier than if I copy it out longhand." And you have them copy both sides because the other side has her name, and 'current as of...' with the most recent revised date.
Your child forgets to take her purse with her to her program one day. You spent all day half hysterical because what if there was an accident, and your child was not able to tell the paramedics about her special needs and what drugs NOT to give her? You decide to sign up for Medic Alert, and the relief you feel when you clasp the bracelet around daughter's wrist is all out of proportion to that small action.
You call your doctor on a weekend, and leave a message with the answering service. Twenty minutes later your phone rings. It's one of the partners, and he says, "Tell me what's up." You list the symptoms, cough productive of green sputum, temp of 99.2F, lethargy, whinyness and say you think your child needs an antibiotic before this progresses to bronchitis. The doctor asks you what antibiotic your child responds best to, and then after you tell him, says, "I'll call it right in."
You know the phone number of your pharmacy by heart. And know the phone number of your PCP office by heart too.
You call your primary care doctor, sounding worried, and the conversation goes like this:
Me, "I don't like the way her cough sounds. She needs to be seen today, can you get her in?"
Nurse, "How soon can you get here?"
Me, "We can be there in twenty-five minutes."
Nurse, "We'll squeeze you in. See you when you get here."
*note* Our primary care doctor has Sick Call in the afternoon, to take care of people who need to be seen the same day. You have to take whatever doctor is available, but that's ok because all the doctors in the practice know your child. Sometimes Sick Call is full and you have to wait until the next day, but if it's really urgent they'll squeeze you in.
Your child lies dying, much too young, and for a moment, amidst the terrible pain of it all, you mind is filled with thankfulness that the doctors were able to help her hold on until her sisters could get here from the opposite coast, and from another state far away, so your daughters can all be together again for a little while longer.
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