To say I was frustrated would be an understatement. I am desperately wanting to get back into the groove of dehoarding and getting things out the door, but my body does not seem to approve this message.
The pain medicine is attempting to kick in, but it's not really trying that hard yet. So far, it's just making me sleepy. When it gets like this, it's uncomfortable for me to sit, lie down, or to stand. The pain in my hips and lower back makes it nearly impossible to concentrate, yet the pain medicine makes concentrating just as difficult. If I'm lucky, I have about an hour a day where I'm able to function almost normally, if I have to take prescription pain meds. OTC stuff doesn't even touch it.
Needless to say, I'm struggling to keep up with the day to day of housecleaning, laundry and meals. We won't even mention the taxes that need to be done or the other important paperwork that screams at me each time I walk by pretending I don't hear it.
Stupid antibiotic. If it weren't for the fact that it is one of only a couple I can take, I'd never take it again. Don't get me wrong. It does a great job of eradicating the infection, but it comes at such a high cost. Hopefully, I won't need antibiotics again now that my tonsils are no longer there and the infection is gone.
Hopefully.
Showing posts with label medical problems. Show all posts
Showing posts with label medical problems. Show all posts
Saturday, March 23, 2013
Friday, January 6, 2012
If you think a black eye is good, how about head to toe bruises?
Things were tough for Scooter her first few years of life. She was considered medically fragile and ended up hospitalized with pneumonia or asthma, if we even dared to take her out in public. She was so ill so often that I would have constant nightmares of bringing her home from the hospital in a body bag. It was horrific. If it were not for her strong desire to live, I don't think she'd have survived her many close calls with death.
She was willing to fight to stay, and fight she did.
Scooter's indomitable spirit was crucial to her survival and development. If she hadn't had the fight in her that she did, she'd have never learned to sit. Granted, it didn't happen until she was 4, but it happened! And walking? The doctors felt it was out of the question, but they didn't know her like we did. We knew in our hearts that she was going to walk someday. She took her first ever steps 2 weeks before her 6th birthday, and she never looked back. We gave away her wheelchair when she was 7.
Her strength and determination helped her beat the odds time and time again.
Scooter's frustration over not being able to sit up, not being able to eat solids until she was 5, and the constant illness, combined with her lack of ability to communicate was very apparent. She often lashed out. She would reach over when she was angry and pull someone's hair as hard as she could, relieving the victim of a small handful of hair each and time.
She hits herself in the head when she's angry. When she is upset and smacks herself, you can hear a gut-wrenching thud from the other room. It's a horrible sound. For years, she's had not only a bruised lump on the back of her right wrist but on her forehead above her right eye, as well. When she was little she had bangs to help cover the ugly bump. Mostly, it was so other kids wouldn't gawk at her, but the issue of someone reporting us to CPS for something she did to herself definitely played a role in her having bangs.
But these aren't the only examples of Scooter's temper problems and our concern that we'd be reported to Child Protective Services.
Because Scooter couldn't sit up until she was 4, she was in the crib until we felt it was safe for her to be in her own bed, but it frustrated her to be so immobile. When she wasn't in the crib, she got around pretty darned well. She did what we called "the backstroke" across the floor to get anywhere she wanted in the house. Lying on her back, she would raise her elbows above her shoulders, firmly plant them on the floor and pull her body with her head cocked, looking over her head at her destination. As a result, she had no hair on the back of her head at all except the occasional stubble where some of her hair was trying to grow back.
Her crib was the only place we felt she was safe, if we couldn't be right there watching her. So if it was time for Hopper's bath, or if we had to use the restroom, Scooter was in the crib. We felt we had no choice. Her safety was of utmost importance.
For several months, maybe a year, she hated being in the crib, if anyone else was awake. She would let us know of her displeasure by retaliating. At times she would take her diaper off and smear it around, (thus, another reason for the 20 bottles of rubbing alcohol), but other times she resorted to hurting herself. She would put her arms and legs through the spindles of the crib and beat them until they were bruised.
If she was angry that we put her in the crib, so we could shower, the length of her legs and arms were absolutely black and blue by the time we toweled off. It was terrifying. If we left the house, we had to keep her in long sleeved shirts and long pants even when it was 100° outside. Anybody seeing a child in a wheelchair, who couldn't even sit up, with the bruises that Scooter sported would have assumed she was the victim of child abuse.
We told the doctors what she did, and they believed us. But still. Would that be enough? We went as far as videotaping some of her tantrums for our own protection. We were terrified of somebody seeing her bruises and reporting us to CPS. I have no doubt that an investigation would have been launched, and if it hadn't been, I would have really questioned the integrity of the local CPS unit.
Scooter was hospitalized a few months before her 4th birthday due to another bout of asthma and pneumonia. While she was hospitalized, the doctors ordered a PH probe study to test how often she was experiencing acid reflux. The results were not good. It didn't matter what position she was in, whether she had just eaten, or whether she was sleeping or awake. She was experiencing heartburn over 80% of the time.
She needed surgery to correct it. The doctors didn't want her going home without having the surgery. So once the pneumonia was cleared up and the asthma was under control, they booked the OR. She had a fundoplication. It's a surgery to wrap her stomach around her esophagus and give her a sphincter of sorts to replace the esophageal sphincter she was born without.
Normally, I stayed overnight with the kids when they're in the hospital, or we take turns, but this time I was sick. We didn't want Scooter to catch whatever ailed me, so Hubster spent his nights at the hospital this time . By the 6th night or so he was exhausted from the nurses constantly coming in through the night to give her meds or breathing treatments and then putting in a full day at work. He needed to get some sleep, so he stayed home that last night. She was to have surgery in the morning.
I was still getting over my illness and didn't want to compromise her recovery, so for the first time ever, Scooter was alone at the hospital overnight. It was the only time she ever has been, or ever will be, alone overnight while hospitalized. She desperately needs one of us to be there with her. The hospital is a big scary place for a kid to be alone.
When we got to the hospital a few hours before the surgery, the next morning, three nurses came running down the hall to meet us. We didn't know what was going on, and we were a bit startled. What was wrong? How serious was it?
MrsHubster! MrHubster! Wedon'tknowwhathappened! We'resosorry! Wedidn'ttouchher! Wedidn'tdoit! Wecameintotheroomandshelookedlikethis! She'scoveredinbruisesfromheadtotoe!!
We walked into her room to see that Scooter was indeed covered in bruises. These were the same type of bruises that we covered up during the summer for fear that CPS would take our daughters away from us. And the bruises were deeper and uglier than any that she'd had to date.
The hospital had two types of metal cribs they used. Some cribs had round rods. Others had rectangular spindles. The rectangular spindles were about 1" by .5", and although they were not sharp enough to cut anyone, they were definitely sharper than the rods. Scooter's crib happened to have the rectangular spindles this time.
She glared at us when we came in. She was mad. She'd gotten so upset that neither of us stayed the night that she put her arms and legs through the spindles and flailed. It had to have hurt. The bruises were so deep, and they were such a dark black. They lasted for what seemed like forever but in reality was just a few weeks.
It absolutely broke our hearts. We felt horribly guilty that it happened, because we weren't there with her. It was our fault. On the other hand, we were also completely relieved. The nurses were relieved, too. They knew we had no intention of suing them.
It hadn't even crossed our minds.
For the first time in months, we felt like we could breathe.
We knew that this incident would be recorded at the hospital. It would be recorded in the file at her pediatricians'. And it would be kept in those records until she was at least 18 years old. This incident would keep CPS at bay, should we ever be reported. We finally had proof we didn't cause the bruises on her arms and legs. The relief we felt was immeasurable.
Between Hopper's black eyes and Scooter's black and blue marks, we had a constant cloud of fear under which we lived for years. The anxiety from that came rushing back to us when we first learned we needed to get guardianship of the girls a few years ago. It just kicked into high gear the last few months as we began this journey.
After the chat with the court visitor the other day, the relief was once again palpable.
We have nothing to fear.
And in a few weeks when we go to court, it will be official.
And we will be able to breathe deeply once again.
She was willing to fight to stay, and fight she did.
Scooter's indomitable spirit was crucial to her survival and development. If she hadn't had the fight in her that she did, she'd have never learned to sit. Granted, it didn't happen until she was 4, but it happened! And walking? The doctors felt it was out of the question, but they didn't know her like we did. We knew in our hearts that she was going to walk someday. She took her first ever steps 2 weeks before her 6th birthday, and she never looked back. We gave away her wheelchair when she was 7.
Her strength and determination helped her beat the odds time and time again.
Scooter's frustration over not being able to sit up, not being able to eat solids until she was 5, and the constant illness, combined with her lack of ability to communicate was very apparent. She often lashed out. She would reach over when she was angry and pull someone's hair as hard as she could, relieving the victim of a small handful of hair each and time.
She hits herself in the head when she's angry. When she is upset and smacks herself, you can hear a gut-wrenching thud from the other room. It's a horrible sound. For years, she's had not only a bruised lump on the back of her right wrist but on her forehead above her right eye, as well. When she was little she had bangs to help cover the ugly bump. Mostly, it was so other kids wouldn't gawk at her, but the issue of someone reporting us to CPS for something she did to herself definitely played a role in her having bangs.
But these aren't the only examples of Scooter's temper problems and our concern that we'd be reported to Child Protective Services.
Because Scooter couldn't sit up until she was 4, she was in the crib until we felt it was safe for her to be in her own bed, but it frustrated her to be so immobile. When she wasn't in the crib, she got around pretty darned well. She did what we called "the backstroke" across the floor to get anywhere she wanted in the house. Lying on her back, she would raise her elbows above her shoulders, firmly plant them on the floor and pull her body with her head cocked, looking over her head at her destination. As a result, she had no hair on the back of her head at all except the occasional stubble where some of her hair was trying to grow back.
Her crib was the only place we felt she was safe, if we couldn't be right there watching her. So if it was time for Hopper's bath, or if we had to use the restroom, Scooter was in the crib. We felt we had no choice. Her safety was of utmost importance.
For several months, maybe a year, she hated being in the crib, if anyone else was awake. She would let us know of her displeasure by retaliating. At times she would take her diaper off and smear it around, (thus, another reason for the 20 bottles of rubbing alcohol), but other times she resorted to hurting herself. She would put her arms and legs through the spindles of the crib and beat them until they were bruised.
If she was angry that we put her in the crib, so we could shower, the length of her legs and arms were absolutely black and blue by the time we toweled off. It was terrifying. If we left the house, we had to keep her in long sleeved shirts and long pants even when it was 100° outside. Anybody seeing a child in a wheelchair, who couldn't even sit up, with the bruises that Scooter sported would have assumed she was the victim of child abuse.
We told the doctors what she did, and they believed us. But still. Would that be enough? We went as far as videotaping some of her tantrums for our own protection. We were terrified of somebody seeing her bruises and reporting us to CPS. I have no doubt that an investigation would have been launched, and if it hadn't been, I would have really questioned the integrity of the local CPS unit.
Scooter was hospitalized a few months before her 4th birthday due to another bout of asthma and pneumonia. While she was hospitalized, the doctors ordered a PH probe study to test how often she was experiencing acid reflux. The results were not good. It didn't matter what position she was in, whether she had just eaten, or whether she was sleeping or awake. She was experiencing heartburn over 80% of the time.
She needed surgery to correct it. The doctors didn't want her going home without having the surgery. So once the pneumonia was cleared up and the asthma was under control, they booked the OR. She had a fundoplication. It's a surgery to wrap her stomach around her esophagus and give her a sphincter of sorts to replace the esophageal sphincter she was born without.
Normally, I stayed overnight with the kids when they're in the hospital, or we take turns, but this time I was sick. We didn't want Scooter to catch whatever ailed me, so Hubster spent his nights at the hospital this time . By the 6th night or so he was exhausted from the nurses constantly coming in through the night to give her meds or breathing treatments and then putting in a full day at work. He needed to get some sleep, so he stayed home that last night. She was to have surgery in the morning.
I was still getting over my illness and didn't want to compromise her recovery, so for the first time ever, Scooter was alone at the hospital overnight. It was the only time she ever has been, or ever will be, alone overnight while hospitalized. She desperately needs one of us to be there with her. The hospital is a big scary place for a kid to be alone.
When we got to the hospital a few hours before the surgery, the next morning, three nurses came running down the hall to meet us. We didn't know what was going on, and we were a bit startled. What was wrong? How serious was it?
MrsHubster! MrHubster! Wedon'tknowwhathappened! We'resosorry! Wedidn'ttouchher! Wedidn'tdoit! Wecameintotheroomandshelookedlikethis! She'scoveredinbruisesfromheadtotoe!!
We walked into her room to see that Scooter was indeed covered in bruises. These were the same type of bruises that we covered up during the summer for fear that CPS would take our daughters away from us. And the bruises were deeper and uglier than any that she'd had to date.
The hospital had two types of metal cribs they used. Some cribs had round rods. Others had rectangular spindles. The rectangular spindles were about 1" by .5", and although they were not sharp enough to cut anyone, they were definitely sharper than the rods. Scooter's crib happened to have the rectangular spindles this time.
She glared at us when we came in. She was mad. She'd gotten so upset that neither of us stayed the night that she put her arms and legs through the spindles and flailed. It had to have hurt. The bruises were so deep, and they were such a dark black. They lasted for what seemed like forever but in reality was just a few weeks.
It absolutely broke our hearts. We felt horribly guilty that it happened, because we weren't there with her. It was our fault. On the other hand, we were also completely relieved. The nurses were relieved, too. They knew we had no intention of suing them.
It hadn't even crossed our minds.
For the first time in months, we felt like we could breathe.
We knew that this incident would be recorded at the hospital. It would be recorded in the file at her pediatricians'. And it would be kept in those records until she was at least 18 years old. This incident would keep CPS at bay, should we ever be reported. We finally had proof we didn't cause the bruises on her arms and legs. The relief we felt was immeasurable.
Between Hopper's black eyes and Scooter's black and blue marks, we had a constant cloud of fear under which we lived for years. The anxiety from that came rushing back to us when we first learned we needed to get guardianship of the girls a few years ago. It just kicked into high gear the last few months as we began this journey.
After the chat with the court visitor the other day, the relief was once again palpable.
We have nothing to fear.
And in a few weeks when we go to court, it will be official.
And we will be able to breathe deeply once again.
Thursday, January 5, 2012
Raise your hand, if you think a black eye is a good thing?
When I was on the phone the other day the court visitor, she seemed so surprised that we were anxious over the impending guardianship. We explained to her the exact reason for our anxiety when she was here yesterday.
Most of our lives as parents have been fraught with a certain amount of anxiety above what the typical parents experience. If it wasn't one thing, it was another. Part of it was just normal childhood stuff that made us catch our collective breath. Other times, it was typical childhood booboos that happened often enough that it wasn't really typical. Other times, it was thing way beyond the norm - like the roughly 5 dozen hospitalizations our two youngest experienced amongst other things.
We moved cross country so often in Hopper's first 2.5 years that the doctors never seemed to think she was having a problem with ear infections. We'd have to start the count all over from the beginning in order for the doctors to feel she qualified for ear tubes, and by the time she did qualify, it was time for us to move once again. By the time she was 2.5 and had her first set of ear tubes, she'd had right at 3 dozen ear infections.
The constant ear infections caused Hopper to walk like a drunken sailor when she started her upright journey. Walking down a hallway meant she would wobble from one wall to the other in an attempt to keep on her feet. Even after the surgery to insert the first set of tubes in her ears, she ran into everything. Every. Thing.
She started attending preschool shortly after her 3rd birthday. Early intervention and all. And she ran into everything. Most of the time, she ran into things at home. For a few years, one eye or the other was blackened every couple months or si during the school year, and we knew that each and every one of her black eyes was recorded in her permanent file. We lived in fear of the school officials calling child protective services on us with every bump and bruise that showed up on her pale little skin.
One day Hopper's teacher called in a panic. She was on the verge of tears. She was talking so quickly it was hard to understand what she was saying.
OhmygoodnessJudy! I'msosorry! Iwasholdingherhand! Idon'tknowwhathappened. Youknowthosemetalpillarsthatseparatethedoubledoorsattheschool? Wewerecominginfromrecess,andIwasholdingHopper'shand,andIdon'tknowhowithappened,butsheranrightintoit,andshehasahugeblackeye!
I am SO sorry!!
I started laughing.
I couldn't help it.
I was so incredibly relieved, and I know it sounds horrible to be relieved that your child had yet another black eye, but it was so much more than that. I knew that Hopper was fine, and it felt like I could breathe for the first time since she'd started school 4.5 years earlier. She had finally gotten a black eye with someone else watching her. This would be recorded in her permanent file. We knew then and there that we would not be accused of causing her frequent black eyes. She was a very active kid with poor balance that just happened to run into things a lot. And if it happened when she was with professionals, and they wouldn't be found liable, then we knew that we wouldn't either.
We knew that CPS wouldn't be knocking on our door to take our children away from us, because Hopper had an inordinate number of black eyes. But we still didn't know, if they'd come after us because of Scooter.
But that's a story for another day...
Most of our lives as parents have been fraught with a certain amount of anxiety above what the typical parents experience. If it wasn't one thing, it was another. Part of it was just normal childhood stuff that made us catch our collective breath. Other times, it was typical childhood booboos that happened often enough that it wasn't really typical. Other times, it was thing way beyond the norm - like the roughly 5 dozen hospitalizations our two youngest experienced amongst other things.
We moved cross country so often in Hopper's first 2.5 years that the doctors never seemed to think she was having a problem with ear infections. We'd have to start the count all over from the beginning in order for the doctors to feel she qualified for ear tubes, and by the time she did qualify, it was time for us to move once again. By the time she was 2.5 and had her first set of ear tubes, she'd had right at 3 dozen ear infections.
The constant ear infections caused Hopper to walk like a drunken sailor when she started her upright journey. Walking down a hallway meant she would wobble from one wall to the other in an attempt to keep on her feet. Even after the surgery to insert the first set of tubes in her ears, she ran into everything. Every. Thing.
She started attending preschool shortly after her 3rd birthday. Early intervention and all. And she ran into everything. Most of the time, she ran into things at home. For a few years, one eye or the other was blackened every couple months or si during the school year, and we knew that each and every one of her black eyes was recorded in her permanent file. We lived in fear of the school officials calling child protective services on us with every bump and bruise that showed up on her pale little skin.
One day Hopper's teacher called in a panic. She was on the verge of tears. She was talking so quickly it was hard to understand what she was saying.
OhmygoodnessJudy! I'msosorry! Iwasholdingherhand! Idon'tknowwhathappened. Youknowthosemetalpillarsthatseparatethedoubledoorsattheschool? Wewerecominginfromrecess,andIwasholdingHopper'shand,andIdon'tknowhowithappened,butsheranrightintoit,andshehasahugeblackeye!
I am SO sorry!!
I started laughing.
I couldn't help it.
I was so incredibly relieved, and I know it sounds horrible to be relieved that your child had yet another black eye, but it was so much more than that. I knew that Hopper was fine, and it felt like I could breathe for the first time since she'd started school 4.5 years earlier. She had finally gotten a black eye with someone else watching her. This would be recorded in her permanent file. We knew then and there that we would not be accused of causing her frequent black eyes. She was a very active kid with poor balance that just happened to run into things a lot. And if it happened when she was with professionals, and they wouldn't be found liable, then we knew that we wouldn't either.
We knew that CPS wouldn't be knocking on our door to take our children away from us, because Hopper had an inordinate number of black eyes. But we still didn't know, if they'd come after us because of Scooter.
But that's a story for another day...
Saturday, November 5, 2011
Immobilization. It's not as fun as it sounds.
What I didn't mention in my last post from a couple of weeks ago is that I've really been struggling lately. I said that we had a really long and stressful day getting state IDs and flu shot and all the week before and made 7 pints of salsa. And I mentioned that I was still getting things done.
However, my effectiveness as a person slowed to almost a complete halt during the days after that outing. Dehoarding stopped. Most house work and laundry came to a screeching halt. Yep. I have been pretty worthless.
The night before we spent the day getting the documentation for the girls that was needed my stomach started churning. Flipping. Rolling, if you will. Nonstop. Like I had a hamster on a wheel in the pit of my gut. It didn't stop at all for over 2 weeks.
You know how your stomach jumps when you see a baby almost fall headfirst down the stairs? Or you see a ball roll out in front of you in the street while you're driving, and you notice a small child in your periphery? Or you witness an accident caused by an erratic driver?
Yeah. That kind of flipping.
When my stomach did finally stop flipping it was short lived. As in about 18 hours or so. And then it started up again. I felt like I was going to jump out of my skin. Even when I was expecting a call, I'd nearly jump out of my skin when the phone actually rang. I felt like I was trembling all the time, but when I would hold my hand up to check to see, if it was shaking, it wasn't. I was just shaking on the inside.
I made an appointment to see my doctor, but I had to cancel the first one due to bad roads. The last thing I needed to do is get in a car and drive on ice in the condition I was in. I knew I needed help, and that I was having a problem with anxiety. I also knew that I didn't know how to make it stop on my own. That I needed help. Because when your stomach is flipping and turning all the time like that, it's hard to concentrate. To eat. To sleep. To function.
The doctor confirmed that I was suffering from anxiety. The only other time I've had anything even close to this happen was when I had a reaction to a medication a few years ago. I have to wonder, if that reaction made my body more susceptible to anxiety. I guess it doesn't matter. I have it now.
We met with the attorney on Monday. Plunked down the $500 for the court costs, but we won't actually have to pay the attorney's fees. Hubster signed up for some sort of legal plan through the company he works for last year, and it pays the attorney. And although we could technically do this on our own, we'd much rather have the expertise a lawyer can lend to the situation. I shudder at the thought of what the anxiety would be like, if we weren't going through an attorney!
I have no doubt that the stress is due to the whole guardianship thing, and I believe it will go away once everything is completed. I am thinking I'll likely start 2012 in a totally different state than I'm in right now, but until then I'll stay on the meds the doctor prescribed. They've already helped tremendously, and it's been less than a week.
Thursday, Bugster came over, and we made salsa together. Once we tasted the salsa I'd made awhile back, we realized that it wasn't going to be enough to get us all through the winter. So we made a day of it and canned 14 pints and 1 quart, since we couldn't find the last of the pint jars. We're set until next Fall when we'll likely make more from the tomatoes, peppers and onions we'll hopefully have in our gardens.
I'm still behind on housework, but I know I'll be able to get it done in plenty of time for the home visit. I won't have all the dehoarding done, but I'm confident that we'll pass with flying colors. I'm sure we'll be granted guardianship, because the best place for the girls to be is with us. In their own home. With their family. And when I look at each part of the guardianship process individually, I know we'll do fine. But the whole of it is more than overwhelming.
Hubster asked me out on a date the other night. We need time to reconnect and get away from the stress of it all, so I jumped at the chance. Hopper and Scooter are going to spend the day with Bugster, Hubster and Frank after we all do a little shopping together. We haven't all been out together in months. In fact, Scooter just started back to school this past week after the whole fiasco of the hospitalization, head-to-toe rash, and weeks of steroids to get the allergic reaction under control. So we need this as a family. All of us.
I'm ready for some decompression.
Sunday, September 25, 2011
Paging Mr Man. Mr Red Man?
Two weeks ago, when Scooter had to be admitted to the hospital with the fear of a blood infection, they had to put her on some strong IV antibiotics. One of those antibiotics is called Vancomycin. It can cause what is known as Red Man Syndrome. It is basically an intense flushing of the body due to a histamine response to the antibiotic.
We were told it's not necessarily an allergic reaction, but she needed antihistamines each time she got a new bag of antibiotics, so we could try to get the redness under control. When she was discharged from the hospital that Wednesday, we noticed that the redness was worse. We asked, if she could have more antihistamines, but there was only an order for it to be administered by IV, and her IV had already been removed. We decided not to wait for the doctor to write more orders, and just took her straight home and got her
started on them at home.
In spite of being on antihistamines every 4 to 6 hours, the redness was getting worse and was looking more like a bad rash. Her poor stomach felt like leather and sandpaper at the same time. She was covered over her entire body, except the lower arms and legs. She was miserable. The rash was hot to the touch, it stung, and it itched like crazy. She started steroids that Friday night to try to get the rash under control.
Ha.
By Sunday, the rash started crawling up her neck and onto her face and scalp. We took her into the urgent care clinic. The doctor said he figured that her body was overwhelmed with antibiotics that didn't have an infection to work on, and it just couldn't handle it. He said to continue the steroids and antihistamines, stop the oral antibiotics she'd been sent home on and to have her see a dermatologist as soon as we could.
We got an appointment for Tuesday and waited while the rash got worse.
The dermatologist said that he thought it was an allergic reaction to the antibiotic she'd been sent home with from the hospital. He also said it could still be the Red Man, as there are instances when it has a delayed reaction and gets worse about a week out from the original episode. (Her reaction started within minutes of being on the Vancomycin, which is normal, as far as Red Man goes, but the delayed reaction definitely fit in with the timeline of the rash).
He increased her steroid dosage and prescribed an steroid ointment for the rash. He also told us to use an amazing hypoallergenic cream, and he'd see us in a couple of weeks. Within a couple of days, the rash on her trunk started to fade as she started to peel like she'd had a sunburn over her entire body. The sheets on her bed are covered every morning with little pieces of peeled skin when she gets out of bed.
And while the rash looked better on most of her body, we watched it creep down her arms and legs. She looked like she had Scarlet Fever or something. The good news is that her doctor said her pneumonia is gone, even though she'll still have a cough for a couple more weeks.
Thankfully, it appears as though her rash has stopped growing and has all but disappeared. Her skin is still a mottled purple and looks like raw hamburger or something, and she's still peeling, but she's feeling so much better. The ointment and cream have helped tremendously, and we are so very grateful.
It's so good to see her smiling again!
Now, I can hopefully get over the temporary paralysis that seems to set in when there's a big medical stressor like this.
We were told it's not necessarily an allergic reaction, but she needed antihistamines each time she got a new bag of antibiotics, so we could try to get the redness under control. When she was discharged from the hospital that Wednesday, we noticed that the redness was worse. We asked, if she could have more antihistamines, but there was only an order for it to be administered by IV, and her IV had already been removed. We decided not to wait for the doctor to write more orders, and just took her straight home and got her
started on them at home.
In spite of being on antihistamines every 4 to 6 hours, the redness was getting worse and was looking more like a bad rash. Her poor stomach felt like leather and sandpaper at the same time. She was covered over her entire body, except the lower arms and legs. She was miserable. The rash was hot to the touch, it stung, and it itched like crazy. She started steroids that Friday night to try to get the rash under control.
Ha.
By Sunday, the rash started crawling up her neck and onto her face and scalp. We took her into the urgent care clinic. The doctor said he figured that her body was overwhelmed with antibiotics that didn't have an infection to work on, and it just couldn't handle it. He said to continue the steroids and antihistamines, stop the oral antibiotics she'd been sent home on and to have her see a dermatologist as soon as we could.
We got an appointment for Tuesday and waited while the rash got worse.
The dermatologist said that he thought it was an allergic reaction to the antibiotic she'd been sent home with from the hospital. He also said it could still be the Red Man, as there are instances when it has a delayed reaction and gets worse about a week out from the original episode. (Her reaction started within minutes of being on the Vancomycin, which is normal, as far as Red Man goes, but the delayed reaction definitely fit in with the timeline of the rash).
He increased her steroid dosage and prescribed an steroid ointment for the rash. He also told us to use an amazing hypoallergenic cream, and he'd see us in a couple of weeks. Within a couple of days, the rash on her trunk started to fade as she started to peel like she'd had a sunburn over her entire body. The sheets on her bed are covered every morning with little pieces of peeled skin when she gets out of bed.
And while the rash looked better on most of her body, we watched it creep down her arms and legs. She looked like she had Scarlet Fever or something. The good news is that her doctor said her pneumonia is gone, even though she'll still have a cough for a couple more weeks.
Thankfully, it appears as though her rash has stopped growing and has all but disappeared. Her skin is still a mottled purple and looks like raw hamburger or something, and she's still peeling, but she's feeling so much better. The ointment and cream have helped tremendously, and we are so very grateful.
It's so good to see her smiling again!
Now, I can hopefully get over the temporary paralysis that seems to set in when there's a big medical stressor like this.
Wednesday, September 14, 2011
With an ending reminiscent of LOST
Imagine, if you will, that for the last six years, you've watched your favorite television show develop into something you could have never envisioned. You've watched actors come and go. You've watched love blossom between your favorite characters. You've watched as the plot thickens before the mystery is finally revealed. You've laughed. You've cried. You've gotten to know these characters, and you love them. They feel like a part of your family.
You've become emotionally invested in the program and it's characters.
Then betrayal hits.
The producers of the show, in their infinite wisdom, decide a fate so cruel. You find out what you've been watching is only a dream. It didn't really happen. You get angry over them wasting your time. Wasting your emotional investment.
Welcome to our world...
Only in our world, it's a dream we can live with and we're thrilled with the outcome.
The reports finally came in on the blood tests.
The blood culture had apparently been contaminated somewhere along the line. Scooter does NOT have an infection roaming the hallowed halls of her little blood vessels.
Somewhere, between the needle prick on her arm that lead to that fateful phone call, and the lab, the blood culture was compromised.
Our shoulders are carrying a much lighter load tonight, as Scooter is sleeping a sound sleep tonight without nurses interrupting to take vitals. Without beeping machines. Without tangled wires. Without fear.
She is still sick. She's still needing antibiotics and breathing treatments. She still has pneumonia.
But it's *just* pneumonia.
It's funny how a parent can be relieved that their child has pneumonia, but considering the circumstances, we're beyond relieved.
We're also a bit angry that Scooter had to endure big time, heavy duty antibiotics, when she didn't need to. That it cost us a couple of days of our lives. That it may cost us big bucks, if we have to pay the 10% deductible for the hospital stay.
But mostly, we're just relieved.
Above all, we're relieved to know that Scooter should be able to kick this pneumonia to the curb with the antibiotics she's on. That she was protected from ... well ... horrible things. And I'm thanking God that she's going to be fine.
We are beyond grateful that the hospital acted so quickly when they thought Scooter had a potentially deadly infection in her blood. They took it just as seriously as we did, and it's good to know that we can count on our local hospital to come through for us like that. The doctors were all absolutely incredible, and again, we're thankful.
We're eternally grateful to friends and family who have been there, praying for us, and for emotional support that helped us through this in ways they can't fathom. Thank you!
And lastly, we're so very thankful for our very comfortable beds to snuggle in tonight, and for soft pillows on which to lay our heads.
We are indeed blessed.
And we are so incredibly, incredibly thankful!
You've become emotionally invested in the program and it's characters.
Then betrayal hits.
The producers of the show, in their infinite wisdom, decide a fate so cruel. You find out what you've been watching is only a dream. It didn't really happen. You get angry over them wasting your time. Wasting your emotional investment.
Welcome to our world...
Only in our world, it's a dream we can live with and we're thrilled with the outcome.
The reports finally came in on the blood tests.
The blood culture had apparently been contaminated somewhere along the line. Scooter does NOT have an infection roaming the hallowed halls of her little blood vessels.
Somewhere, between the needle prick on her arm that lead to that fateful phone call, and the lab, the blood culture was compromised.
Our shoulders are carrying a much lighter load tonight, as Scooter is sleeping a sound sleep tonight without nurses interrupting to take vitals. Without beeping machines. Without tangled wires. Without fear.
She is still sick. She's still needing antibiotics and breathing treatments. She still has pneumonia.
But it's *just* pneumonia.
It's funny how a parent can be relieved that their child has pneumonia, but considering the circumstances, we're beyond relieved.
We're also a bit angry that Scooter had to endure big time, heavy duty antibiotics, when she didn't need to. That it cost us a couple of days of our lives. That it may cost us big bucks, if we have to pay the 10% deductible for the hospital stay.
But mostly, we're just relieved.
Above all, we're relieved to know that Scooter should be able to kick this pneumonia to the curb with the antibiotics she's on. That she was protected from ... well ... horrible things. And I'm thanking God that she's going to be fine.
We are beyond grateful that the hospital acted so quickly when they thought Scooter had a potentially deadly infection in her blood. They took it just as seriously as we did, and it's good to know that we can count on our local hospital to come through for us like that. The doctors were all absolutely incredible, and again, we're thankful.
We're eternally grateful to friends and family who have been there, praying for us, and for emotional support that helped us through this in ways they can't fathom. Thank you!
And lastly, we're so very thankful for our very comfortable beds to snuggle in tonight, and for soft pillows on which to lay our heads.
We are indeed blessed.
And we are so incredibly, incredibly thankful!
Scooter update.
Got a call at 10:35 Sunday night from the emergency room. Apparently, the blood culture they'd taken on Sunday when Scooter went in by ambulance to the hospital started growing something. We needed to bring Scooter back to the ER immediately.
Since she's been in, she's been on round the clock IV antibiotics. We still don't have the results for either the type of bacteria that is in her blood nor for the echocardiogram, which will determine whether or not she has an infection in her heart valves. Hoping to get answers to both of these today. Answers will help determine when she gets to come home.
She's doing quite a bit better, but she's getting sick of the hospital, the poor thing.
Thank you all for your thoughts and prayers. They mean the world to me.
I'll be back soon.
Since she's been in, she's been on round the clock IV antibiotics. We still don't have the results for either the type of bacteria that is in her blood nor for the echocardiogram, which will determine whether or not she has an infection in her heart valves. Hoping to get answers to both of these today. Answers will help determine when she gets to come home.
She's doing quite a bit better, but she's getting sick of the hospital, the poor thing.
Thank you all for your thoughts and prayers. They mean the world to me.
I'll be back soon.
Tuesday, September 13, 2011
Sigh
at hospital with scooter. blood cultures from yesterdays visit are growing. to b e admitted for iv antibiotics. needing to rule out mrsa and incfected heart valve. please pray.
Monday, September 12, 2011
The Perfect Storm, or Why We're Sort Of Ready For 2011 To Go The Way Of My Get Up And Go...
We've had a relatively healthy year, in spite of Hopper spending a week and a half in the hospital and 8 weeks in a wheelchair with her broken leg this summer. When I say we've been fairly healthy, I mean we've had fewer than our normal number of colds and stomach bugs. Some years, the girls have missed 3 out of the first 4 weeks of school, so overall, we really are doing well.
Friday seemed no different. The girls were doing well. Scooter had missed a couple of days of school last week due to female problems, so it didn't really surprise me when she decided to take a nap on the couch. She just seemed a little tired. We all need a nap from time to time. I honestly thought nothing of it.
Saturday morning found Scooter horribly congested. By Saturday night, we were giving her nebulizer treatments to open up her lungs to help her breathe better, and gave her some of the nighttime cold medicines that help a person sleep while they work on the congestion and stuffy or runny noses. We were a little surprised that we had to give it a second time, because usually one dose is plenty. When the second dose didn't work we pulled out the big guns. We went with the cough syrup with codeine, and she was finally able to get some rest.
She slept in Sunday morning, and I was just thankful she was getting some rest, so it wasn't a surprise when she didn't come out of the bedroom until 10:00 or so. She came out and curled up on the couch, and Scooter never curls up on the couch. She sprawls. So I knew she definitely wasn't feeling well. I gave her a nebulizer treatment hoping it would help, but she still seemed off. I noticed her coloring wasn't right, so I checked her with the pulse ox. Sure enough, her oxygen levels were low, and I knew we needed to take her in to be seen.
I went in the bedroom to call the pediatrician's office to see, if they had any openings, and to wake Hubster up. When he heard what was going on, he said he'd get showered really quickly and take her in, and I said I'd get her dressed. He headed to the shower, and I picked out some clothes for her to wear.
I decided to just help her get dressed where she was, rather than making her walk all the way back to her bedroom. She was already short on oxygen, or her lips wouldn't have been blue, so I figured it was the safest bet. I got her clean underwear on and told her to keep standing, so I could put her bra on. I didn't even get it up on her arms before she pitched forward.
I realized she hadn't just lost her balance.
She was out.
I tipped her back, so she'd fall toward the loveseat to cushion her fall. Once she landed, she started twitching, and her eyes started rolling back in her head, much like Hopper's did during the Vagal Response she had at the hospital.
Crap! Here we go again!
You know those little toys that collapse when you push up the bottom? They're ones when I was a kid were wooden, but I've seen plastic ones in later years. The figure on the top of the base is rigid, held in place by taut string, and the moment you push the bottom of the base up, the string is no longer tight, and the character collapses. You know what I'm talking about, right?
That's exactly how Scooter looked.
It was terrifying.
I got her to the floor and laid her down as best I could. I started screaming for The Hubster, but he was in the downstairs bathroom, and he couldn't hear me. Hopper started yelling, "Daddy! Daddy!" in her best hysterical scream, and he still didn't hear her. I told her to go down and get him, so she stood at the top of the stairs and repeated her cry for help between sobs. I told her once again to go downstairs and get him, and somehow, she was able to hear me.
Hubster came running upstairs, and by the time he finally got up here, Scooter came to. She was disoriented, but she was awake and breathing. We realized that she needed to be seen in the emergency room immediately, but we also knew Hopper couldn't go. She was a bundle of yelling nerves. She needed to stay home, and it was going to take a few minutes for Bugster to make her way over to sit with her, so we could leave. And neither of us was comfortable with driving her without someone in the backseat monitoring her the entire way.
We called 911. The paramedics were there within moments.
Poor Hopper was in hysterics, crying. As much as we tried assuring her that Scooter would be fine, she couldn't seem to fathom the possibility. Having 6 paramedics in the living room didn't help a bit. She was terrified. She knew I was scared, and I knew that didn't help, so I tried my best to stop the shaking in my voice.
Once the paramedics realized Scooter was stabilized, they helped her out to the ambulance. Hubster rode to the hospital in the front of the ambulance, while I stayed home with Hopper and waited for Bugster to show. It wasn't even 11:00 yet.
I got ready as quickly as I could while trying to calm Hopper's fears. By the time Bugster got here, I was ready to go. I was shaking as I got in the car to drive to the hospital and had to thoroughly concentrate on driving, in order not to speed or get in an accident. That was the last thing I needed.
Scooter and Hubster were waiting for me in Scooter's room. She'd already had her blood drawn and was hooked up to an IV. A short while later, someone came in and did an EKG, a strep test, (we have a tendency to not have any pain or fever with strep, and my brother suffered from Rheumatic Fever as a result of untreated strep due to a total lack of symptoms when he was little), an x-ray of her lungs, and got a urine sample. It felt like and eternity as we waited for test results. About 2:00, the doctor came back in and let us know that all the tests looked good. We were a bit surprised that the x-ray didn't show anything. We figured she had pneumonia as quickly as things hit her. Even the doctor was surprised.
He said she was definitely dehydrated, in spite of drinking a ton of water throughout the night, and that she had bronchitis. He started her on antibiotics, so it wouldn't turn into pneumonia and got her started on her second bag of fluids. He said he wanted to keep an eye on her heart rate, as it was running high (117 to 135bpm), but he figured it was from the dehydration and fever. He said we should be able to go home in an hour or so when the second bag of fluids was gone. Her heart rate had gone down some after the first bag of fluid and the acetaminophen, and he figured it would just continue to go down.
He came in around 4:30 when the IV was almost empty and said he was a little concerned about her heart rate. He said the only other thing he could think of that could cause her heart rate to stay so high like that was blood clots. Was she on birth control pills, by chance.
Yes. She was.
He sort of talked himself out of running a blood test that would show markers, if she was at risk for blood clots. He said that he figured it was just due to the dehydration, and that we should make an appointment to see her cardiologist just to have her checked. He said someone would be in to finish up paperwork, and we could go home.
Less than 2 minutes later, he came in apologizing. He said he felt like he couldn't take the risk and not run the test. That they could use the blood that had already been drawn, and the test would be finished in 30 minutes or so.
We were relieved. The doctor told us he just wouldn't have been able to sleep that night not knowing and wondering, if he sent her home prematurely. We agreed. We wouldn't have been able to sleep a wink either!
An hour or so later, he came back in to let us know that the test results were in. They showed that the markers were indeed elevated that would indicate potential blood clots. She would need a CT Scan to rule them out. The test would only take about 5 minutes, but it would take 20 to 30 minutes to have them read.
An hour and a half later, we asked, if the results were in. Sure enough, they were, and the doctor would be in to talk to us.
Emergency rooms are always busy. I just wish they'd be realistic about times. Go sit in this room for 3 hours, and if you're lucky, a doctor will be in to talk to you. Having tests run? You can count on at least a 6 hour emergency room stay on top of your wait in the waiting room. By ''30 minutes'', we really mean "2 hours".
But I digress.
The doctor came in apologizing for keeping us so late. Thankfully, the CT showed she did not have any blood clots, and we were all (including the doctor) incredibly relieved. However, he said that the scan did show something the x-ray didn't pick up.
She has pneumonia.
He said to just keep up on the breathing treatments and cough syrup, to make sure she got her antibiotics daily and to follow up with her regular doctor. He said he figured that she'd had a mild febrile seizure that was brought on by the dehydration and a spike in fever and was complicated by her low oxygen. It was a perfect storm.
We left the hospital to come home around 8:00, grabbed something on the way home to fill our bellies and had Scooter in bed with all medicines on board in short order. She woke up this morning feeling much better. She still isn't feeling well, and her chest is still tight, but it's a far cry from yesterday.
Still.
We are ready for 2011 to be done.
We need a fresh start.
Friday seemed no different. The girls were doing well. Scooter had missed a couple of days of school last week due to female problems, so it didn't really surprise me when she decided to take a nap on the couch. She just seemed a little tired. We all need a nap from time to time. I honestly thought nothing of it.
Saturday morning found Scooter horribly congested. By Saturday night, we were giving her nebulizer treatments to open up her lungs to help her breathe better, and gave her some of the nighttime cold medicines that help a person sleep while they work on the congestion and stuffy or runny noses. We were a little surprised that we had to give it a second time, because usually one dose is plenty. When the second dose didn't work we pulled out the big guns. We went with the cough syrup with codeine, and she was finally able to get some rest.
She slept in Sunday morning, and I was just thankful she was getting some rest, so it wasn't a surprise when she didn't come out of the bedroom until 10:00 or so. She came out and curled up on the couch, and Scooter never curls up on the couch. She sprawls. So I knew she definitely wasn't feeling well. I gave her a nebulizer treatment hoping it would help, but she still seemed off. I noticed her coloring wasn't right, so I checked her with the pulse ox. Sure enough, her oxygen levels were low, and I knew we needed to take her in to be seen.
I went in the bedroom to call the pediatrician's office to see, if they had any openings, and to wake Hubster up. When he heard what was going on, he said he'd get showered really quickly and take her in, and I said I'd get her dressed. He headed to the shower, and I picked out some clothes for her to wear.
I decided to just help her get dressed where she was, rather than making her walk all the way back to her bedroom. She was already short on oxygen, or her lips wouldn't have been blue, so I figured it was the safest bet. I got her clean underwear on and told her to keep standing, so I could put her bra on. I didn't even get it up on her arms before she pitched forward.
I realized she hadn't just lost her balance.
She was out.
I tipped her back, so she'd fall toward the loveseat to cushion her fall. Once she landed, she started twitching, and her eyes started rolling back in her head, much like Hopper's did during the Vagal Response she had at the hospital.
Crap! Here we go again!
You know those little toys that collapse when you push up the bottom? They're ones when I was a kid were wooden, but I've seen plastic ones in later years. The figure on the top of the base is rigid, held in place by taut string, and the moment you push the bottom of the base up, the string is no longer tight, and the character collapses. You know what I'm talking about, right?
That's exactly how Scooter looked.
It was terrifying.
I got her to the floor and laid her down as best I could. I started screaming for The Hubster, but he was in the downstairs bathroom, and he couldn't hear me. Hopper started yelling, "Daddy! Daddy!" in her best hysterical scream, and he still didn't hear her. I told her to go down and get him, so she stood at the top of the stairs and repeated her cry for help between sobs. I told her once again to go downstairs and get him, and somehow, she was able to hear me.
Hubster came running upstairs, and by the time he finally got up here, Scooter came to. She was disoriented, but she was awake and breathing. We realized that she needed to be seen in the emergency room immediately, but we also knew Hopper couldn't go. She was a bundle of yelling nerves. She needed to stay home, and it was going to take a few minutes for Bugster to make her way over to sit with her, so we could leave. And neither of us was comfortable with driving her without someone in the backseat monitoring her the entire way.
We called 911. The paramedics were there within moments.
Poor Hopper was in hysterics, crying. As much as we tried assuring her that Scooter would be fine, she couldn't seem to fathom the possibility. Having 6 paramedics in the living room didn't help a bit. She was terrified. She knew I was scared, and I knew that didn't help, so I tried my best to stop the shaking in my voice.
Once the paramedics realized Scooter was stabilized, they helped her out to the ambulance. Hubster rode to the hospital in the front of the ambulance, while I stayed home with Hopper and waited for Bugster to show. It wasn't even 11:00 yet.
I got ready as quickly as I could while trying to calm Hopper's fears. By the time Bugster got here, I was ready to go. I was shaking as I got in the car to drive to the hospital and had to thoroughly concentrate on driving, in order not to speed or get in an accident. That was the last thing I needed.
Scooter and Hubster were waiting for me in Scooter's room. She'd already had her blood drawn and was hooked up to an IV. A short while later, someone came in and did an EKG, a strep test, (we have a tendency to not have any pain or fever with strep, and my brother suffered from Rheumatic Fever as a result of untreated strep due to a total lack of symptoms when he was little), an x-ray of her lungs, and got a urine sample. It felt like and eternity as we waited for test results. About 2:00, the doctor came back in and let us know that all the tests looked good. We were a bit surprised that the x-ray didn't show anything. We figured she had pneumonia as quickly as things hit her. Even the doctor was surprised.
He said she was definitely dehydrated, in spite of drinking a ton of water throughout the night, and that she had bronchitis. He started her on antibiotics, so it wouldn't turn into pneumonia and got her started on her second bag of fluids. He said he wanted to keep an eye on her heart rate, as it was running high (117 to 135bpm), but he figured it was from the dehydration and fever. He said we should be able to go home in an hour or so when the second bag of fluids was gone. Her heart rate had gone down some after the first bag of fluid and the acetaminophen, and he figured it would just continue to go down.
He came in around 4:30 when the IV was almost empty and said he was a little concerned about her heart rate. He said the only other thing he could think of that could cause her heart rate to stay so high like that was blood clots. Was she on birth control pills, by chance.
Yes. She was.
He sort of talked himself out of running a blood test that would show markers, if she was at risk for blood clots. He said that he figured it was just due to the dehydration, and that we should make an appointment to see her cardiologist just to have her checked. He said someone would be in to finish up paperwork, and we could go home.
Less than 2 minutes later, he came in apologizing. He said he felt like he couldn't take the risk and not run the test. That they could use the blood that had already been drawn, and the test would be finished in 30 minutes or so.
We were relieved. The doctor told us he just wouldn't have been able to sleep that night not knowing and wondering, if he sent her home prematurely. We agreed. We wouldn't have been able to sleep a wink either!
An hour or so later, he came back in to let us know that the test results were in. They showed that the markers were indeed elevated that would indicate potential blood clots. She would need a CT Scan to rule them out. The test would only take about 5 minutes, but it would take 20 to 30 minutes to have them read.
An hour and a half later, we asked, if the results were in. Sure enough, they were, and the doctor would be in to talk to us.
Emergency rooms are always busy. I just wish they'd be realistic about times. Go sit in this room for 3 hours, and if you're lucky, a doctor will be in to talk to you. Having tests run? You can count on at least a 6 hour emergency room stay on top of your wait in the waiting room. By ''30 minutes'', we really mean "2 hours".
But I digress.
The doctor came in apologizing for keeping us so late. Thankfully, the CT showed she did not have any blood clots, and we were all (including the doctor) incredibly relieved. However, he said that the scan did show something the x-ray didn't pick up.
She has pneumonia.
He said to just keep up on the breathing treatments and cough syrup, to make sure she got her antibiotics daily and to follow up with her regular doctor. He said he figured that she'd had a mild febrile seizure that was brought on by the dehydration and a spike in fever and was complicated by her low oxygen. It was a perfect storm.
We left the hospital to come home around 8:00, grabbed something on the way home to fill our bellies and had Scooter in bed with all medicines on board in short order. She woke up this morning feeling much better. She still isn't feeling well, and her chest is still tight, but it's a far cry from yesterday.
Still.
We are ready for 2011 to be done.
We need a fresh start.
Thursday, July 7, 2011
In a word? Terrifying.
I started writing this a week ago, but I've been busy enough that I haven't had the opportunity to finish it up. I'm leaving it like I'd written it last week rather than edit the timing of everything. I have too many other issues to deal with right now....
It's been a week since Hopper broke her femur.
It feels like it's been a year.
It appears as though she'll be in the inpatient rehab unit for 2 weeks, unless she really gets that she can not put weight on that leg at all for 8 weeks. She's making progress, but it's still going to take awhile.
Had a scare the other night. I've lost all track of time, but if I recall correctly, it was Friday night...
It was my turn to stay with Hopper at the hospital, and I could tell she was 'off' when I came in the room. She just did not feel well. It was more than just the pain. She let the phlebotomist take her blood without freaking out. She had absolutely no appetite. And she barely answered me, when I asked her a question.
Hopper. was. just. not. Hopper.
Just before 9 pm, the nurse came in to get vitals. I remember not thinking too much of it. I mean vitals are taken all the time, and there's rarely a problem. I always ask what the results are, but they're usually so close to normal that I stick it in the back of my mind as normal and just sort of forget about it. But Friday night was a totally different situation.
The nurse asked, if she could assess Hopper's condition and do her vitals. Sure. That's not a problem. But I heard Hopper cough. It was just a single cough. Sort of like she was clearing her throat. And she's done this sort of coughing or lets loose a bit of a yelp right before she gets sick to her stomach since she was little. So I knew to be prepared. She coughed again a second time, and I had the basin ready for her to use. Sure enough, the third cough was the charm, and she was getting sick to her stomach.
I've seen her get sick many, many times over the years. It has always unnerved me, because of how she responds. She often has a vacant look in her eyes, and she doesn't seem responsive at all for several seconds, but this time was worse. Much worse. Instead of just a vacant look come across her face, she went catatonic. I was mere inches from her face yelling her name, and I could tell she couldn't hear me. She couldn't see me. She couldn't. well. anything. She even stopped breathing.
Knowing that it's always a possibility to for someone to choke on their own vomit and die as a result, I threw her forward into a sitting position as forcefully as I could. I still yelled her name as loud as I could, and she still wasn't responding. All of the sudden, her eyeballs started jumping up and down and then slowly rolled to the back of her head. I just kept screaming her name. Then, just as suddenly as it had begun it was over. Hopper came back, looked at me as if to say, "what", and made eye contact. I did everything I could to make her maintain that contact, so she wouldn't slip away again.
It scared me to death. Well, actually, it scared me enough I wet myself. And that was a first. In the roughly 5 dozen times the girls have been hospitalized, I'd never wet my pants before last Friday night. And I've been scared to what I thought was death, but I've apparently never been *that* scared before.
In my periphery, I could see movement, but my eyes were glued to Hopper's face. Once she came to, I looked up and realized that the nurse had called the crash team, and my screams along with the button she pushed brought RNs out of the woodwork. The room was crawling with nurses, and I'm so very thankful they responded so quickly. Instead of being scared seeing the crash cart sitting there just ...waiting, I was thankful it was there in case it was needed. By God's Grace, it wasn't, but still...
I scrambled to call Hubster to let him know he needed to get back to the hospital ASAP!, but I couldn't seem to reach him. He must have been out of earshot of the phones, so I called Bugster. She only lives a few miles away, and I knew someone needed to stay with Scooter, so I asked her, if she could go let her dad know he needed to come up right away. I didn't know what to tell them was wrong with her, because the professionals didn't even know. Besides, I didn't want either one of them to drive in a panic, so all I could say was for Hubster to get up here.
NOW!
They sent her to the ICU to be monitored overnight, because they weren't sure what had caused her catatonic state. Hubster arrived right before we headed downstairs. It appeared a bit like a seizure but not quite. Once in the ICU, her heart and breathing were monitored. The vomiting continued from time to time, and for some reason I asked, if the heart monitor recorded what had happened when she was getting sick to her stomach. The nurse assured me that it did, but it wasn't set to record. I told her it would have been interesting to see what happened when she got sick. She fiddled around with the machine, but I totally forgot about even saying anything until the next day.
Poor Hopper seemed so miserable that I asked, if they could give her something for her nausea. An hour or so after she took it, she seemed almost normal. She was animated once again, and her personality was back. We were so relieved, but none of us slept really well that night. A few hours after Hopper appeared to be stabilized, Hubster went home to get some sleep. After 3 nights at the hospital with no sleep, he needed it desperately. The last thing we needed was for 2 of our family to end up in need of medical care, so I was glad to see him go home and rest.
Early the next afternoon, Hopper was moved back to the rehab unit. They figured that she'd had a vasovagal (or vagal) response. In her case, the vagus nerve, which runs through the abdomen is overstimulated when she vomits and causes her to lose consciousness. However, it's a bit more serious with her than a simple faint.
Several hours after she was moved back into her room on the rehab unit, she was feeling nauseous again. I could tell by the way she was acting that she was headed in the same direction as she'd been the day before. I asked, if she could be given something for the nausea, because I didn't know, if I could handle a repeat performance, and I didn't know, if she could, either.
The nurse said she knew the doctor had written for an anti-nausea medicine, but she called the doctor to see, if she could give it by IV, so it would work faster. The doctor said yes, and she left to order it from the pharmacy. A few minutes later, she came back in the room and showed us that she had the syringe. Then she told us that she couldn't give it to her.
The doctor had stopped her after she'd picked up the medicine from the pharmacy and told her to come into his office to look at something. He had a printout from the heart monitor from where the nurse turned on the recording down in ICU after I'd mentioned it the night before. During one of her very mild instances of vomiting, her heart had stopped for approximately 4 to 5 seconds.
The nurse miscalculated and said it was approximately 30 seconds that it had stopped, but the doctor said it didn't matter, if it was 4 second or 30 seconds. A stop or pause of any length is a serious matter. I shudder to think of how long her heart stopped up in the room when things first went south. There is a cardiac risk with the IV version of the anti-nausea medication, so the doctor didn't want to chance things and went with the oral version instead. We're so grateful he was looking out for her and so thankful that I wondered aloud what the monitor would have shown during one of her episodes.
At one point, the idea of a pacemaker was on the table. We asked for a cardiology consult, because her heart rate was so high during some instances (it went as high as 170 bpm when she was scared at one point and she had a high of 146/101 for her blood pressure during a different moment of stress!), but the cardiologist figured it would settle down once she got home. He said that her sinus rhythm is totally normal-just very fast (tachycardic) and you should never slow it down with beta blockers, if the rhythm itself is normal. Beta blockers have the potential of making a vagal response much worse, because they slow the heart rate down, and that would be the only reason she would have needed a pacemaker...to keep her heart beating, if the beta blockers slowed her heart too much. Thankfully, she doesn't need either at this time.
However, we do need to prevent her from vomiting as much as possible, to prevent her heart from stopping when she gets sick again. So we will have a prescription of anti-nausea medication at home to use anytime she gets a stomach bug. We'll gladly take that option over watching her go through that again.
She's home now. She's doing remarkably well, and we're very grateful for the amazing nurses and doctors we had through this ordeal. She's struggling with the concept of not bearing weight on her left leg/foot, but she's slowly getting the hang of what it means. The hardest part of all of it for her is the fact that she's stuck in a wheelchair and can't get around like she wants. The hardest part for us is that we don't have a wheelchair ramp outside to get her back and forth through the doorway. It's going to be a long 8 weeks without one. We may have to figure something out, or I fear we'll all go insane stuck inside for so long!
Right now, we're eternally grateful for the sports channels on television! They keep her somewhat occupied.
Did I mention this is going to be a long 8 weeks?
It's been a week since Hopper broke her femur.
It feels like it's been a year.
It appears as though she'll be in the inpatient rehab unit for 2 weeks, unless she really gets that she can not put weight on that leg at all for 8 weeks. She's making progress, but it's still going to take awhile.
Had a scare the other night. I've lost all track of time, but if I recall correctly, it was Friday night...
It was my turn to stay with Hopper at the hospital, and I could tell she was 'off' when I came in the room. She just did not feel well. It was more than just the pain. She let the phlebotomist take her blood without freaking out. She had absolutely no appetite. And she barely answered me, when I asked her a question.
Hopper. was. just. not. Hopper.
Just before 9 pm, the nurse came in to get vitals. I remember not thinking too much of it. I mean vitals are taken all the time, and there's rarely a problem. I always ask what the results are, but they're usually so close to normal that I stick it in the back of my mind as normal and just sort of forget about it. But Friday night was a totally different situation.
The nurse asked, if she could assess Hopper's condition and do her vitals. Sure. That's not a problem. But I heard Hopper cough. It was just a single cough. Sort of like she was clearing her throat. And she's done this sort of coughing or lets loose a bit of a yelp right before she gets sick to her stomach since she was little. So I knew to be prepared. She coughed again a second time, and I had the basin ready for her to use. Sure enough, the third cough was the charm, and she was getting sick to her stomach.
I've seen her get sick many, many times over the years. It has always unnerved me, because of how she responds. She often has a vacant look in her eyes, and she doesn't seem responsive at all for several seconds, but this time was worse. Much worse. Instead of just a vacant look come across her face, she went catatonic. I was mere inches from her face yelling her name, and I could tell she couldn't hear me. She couldn't see me. She couldn't. well. anything. She even stopped breathing.
Knowing that it's always a possibility to for someone to choke on their own vomit and die as a result, I threw her forward into a sitting position as forcefully as I could. I still yelled her name as loud as I could, and she still wasn't responding. All of the sudden, her eyeballs started jumping up and down and then slowly rolled to the back of her head. I just kept screaming her name. Then, just as suddenly as it had begun it was over. Hopper came back, looked at me as if to say, "what", and made eye contact. I did everything I could to make her maintain that contact, so she wouldn't slip away again.
It scared me to death. Well, actually, it scared me enough I wet myself. And that was a first. In the roughly 5 dozen times the girls have been hospitalized, I'd never wet my pants before last Friday night. And I've been scared to what I thought was death, but I've apparently never been *that* scared before.
In my periphery, I could see movement, but my eyes were glued to Hopper's face. Once she came to, I looked up and realized that the nurse had called the crash team, and my screams along with the button she pushed brought RNs out of the woodwork. The room was crawling with nurses, and I'm so very thankful they responded so quickly. Instead of being scared seeing the crash cart sitting there just ...waiting, I was thankful it was there in case it was needed. By God's Grace, it wasn't, but still...
I scrambled to call Hubster to let him know he needed to get back to the hospital ASAP!, but I couldn't seem to reach him. He must have been out of earshot of the phones, so I called Bugster. She only lives a few miles away, and I knew someone needed to stay with Scooter, so I asked her, if she could go let her dad know he needed to come up right away. I didn't know what to tell them was wrong with her, because the professionals didn't even know. Besides, I didn't want either one of them to drive in a panic, so all I could say was for Hubster to get up here.
NOW!
They sent her to the ICU to be monitored overnight, because they weren't sure what had caused her catatonic state. Hubster arrived right before we headed downstairs. It appeared a bit like a seizure but not quite. Once in the ICU, her heart and breathing were monitored. The vomiting continued from time to time, and for some reason I asked, if the heart monitor recorded what had happened when she was getting sick to her stomach. The nurse assured me that it did, but it wasn't set to record. I told her it would have been interesting to see what happened when she got sick. She fiddled around with the machine, but I totally forgot about even saying anything until the next day.
Poor Hopper seemed so miserable that I asked, if they could give her something for her nausea. An hour or so after she took it, she seemed almost normal. She was animated once again, and her personality was back. We were so relieved, but none of us slept really well that night. A few hours after Hopper appeared to be stabilized, Hubster went home to get some sleep. After 3 nights at the hospital with no sleep, he needed it desperately. The last thing we needed was for 2 of our family to end up in need of medical care, so I was glad to see him go home and rest.
Early the next afternoon, Hopper was moved back to the rehab unit. They figured that she'd had a vasovagal (or vagal) response. In her case, the vagus nerve, which runs through the abdomen is overstimulated when she vomits and causes her to lose consciousness. However, it's a bit more serious with her than a simple faint.
Several hours after she was moved back into her room on the rehab unit, she was feeling nauseous again. I could tell by the way she was acting that she was headed in the same direction as she'd been the day before. I asked, if she could be given something for the nausea, because I didn't know, if I could handle a repeat performance, and I didn't know, if she could, either.
The nurse said she knew the doctor had written for an anti-nausea medicine, but she called the doctor to see, if she could give it by IV, so it would work faster. The doctor said yes, and she left to order it from the pharmacy. A few minutes later, she came back in the room and showed us that she had the syringe. Then she told us that she couldn't give it to her.
The doctor had stopped her after she'd picked up the medicine from the pharmacy and told her to come into his office to look at something. He had a printout from the heart monitor from where the nurse turned on the recording down in ICU after I'd mentioned it the night before. During one of her very mild instances of vomiting, her heart had stopped for approximately 4 to 5 seconds.
The nurse miscalculated and said it was approximately 30 seconds that it had stopped, but the doctor said it didn't matter, if it was 4 second or 30 seconds. A stop or pause of any length is a serious matter. I shudder to think of how long her heart stopped up in the room when things first went south. There is a cardiac risk with the IV version of the anti-nausea medication, so the doctor didn't want to chance things and went with the oral version instead. We're so grateful he was looking out for her and so thankful that I wondered aloud what the monitor would have shown during one of her episodes.
At one point, the idea of a pacemaker was on the table. We asked for a cardiology consult, because her heart rate was so high during some instances (it went as high as 170 bpm when she was scared at one point and she had a high of 146/101 for her blood pressure during a different moment of stress!), but the cardiologist figured it would settle down once she got home. He said that her sinus rhythm is totally normal-just very fast (tachycardic) and you should never slow it down with beta blockers, if the rhythm itself is normal. Beta blockers have the potential of making a vagal response much worse, because they slow the heart rate down, and that would be the only reason she would have needed a pacemaker...to keep her heart beating, if the beta blockers slowed her heart too much. Thankfully, she doesn't need either at this time.
However, we do need to prevent her from vomiting as much as possible, to prevent her heart from stopping when she gets sick again. So we will have a prescription of anti-nausea medication at home to use anytime she gets a stomach bug. We'll gladly take that option over watching her go through that again.
She's home now. She's doing remarkably well, and we're very grateful for the amazing nurses and doctors we had through this ordeal. She's struggling with the concept of not bearing weight on her left leg/foot, but she's slowly getting the hang of what it means. The hardest part of all of it for her is the fact that she's stuck in a wheelchair and can't get around like she wants. The hardest part for us is that we don't have a wheelchair ramp outside to get her back and forth through the doorway. It's going to be a long 8 weeks without one. We may have to figure something out, or I fear we'll all go insane stuck inside for so long!
Right now, we're eternally grateful for the sports channels on television! They keep her somewhat occupied.
Did I mention this is going to be a long 8 weeks?
Tuesday, April 12, 2011
That which changed our Life Before. Part 6
Feeding Scooter, as feeding any baby with a cleft palate, was a bit of a challenge.
Physically, she couldn't nurse. For that matter, she couldn't drink out of a regular bottle, either. We had to use a special bottle called a cleft palate nurser with special cross cut nipples in order to feed her. With the cleft in her soft palate, she couldn't get any suction in order to breastfeed or eat from a regular baby bottle, even though the hole was no bigger than my small fingernail. The cleft palate nursers are made of a soft, flexible plastic to make it easy to squeeze the milk out into the baby's mouth to make up for the lack of suction, and they worked fairly well once we got the hang of it. I hung onto the hope that she would one day nurse, and I made sure that all she had in her bottles was breast milk.
Seeing a baby with a cleft palate eat for the first time takes a person off guard, as milk invariably comes right out their little nose. It doesn't spray. It just sort of dribbles. But white is just not the color of what you're expecting to see come out of nostrils. Unfortunately, it also tends to make them cough and gag when they're eating, too. Bless her little heart. Eating was a chore for Scooter.
When she was a week to 10 days old, we loaded up the cleft palate nursers, the cross cut nipples, the breast pump and the kids and took off for Norfolk for Scooter's initial consultation with the plastic surgeon.
We stayed at the same little cruddy hotel with lots of character that we did each time we went up there. Don't get me wrong. It was clean. It was just a bit worn down and its furnishings were not updated at all, but its backyard was the beach of one of the little inlets of one of the bays in the area. For the life of me, I can't seem to remember the name of the bay it sat on, but I know it wasn't the Chesapeake, itself. But there were shells of all sorts, little crabs and fun little things that kept a little one's interest. There was even a real sunken ship!
We would pack up a cooler of picnic foods, grab the little tabletop propane grill and once or twice even the ice cream freezer and make it as close to a vacation as we could for the kids. As adults we were scared of what lie in store, and we didn't want the kids to pick up on that fear. So we did what we could to make it as special an occasion as possible.
We left NC the night before, so we would be able to see Dr. William Magee first thing in the morning. He and his wife founded Operation Smile and traveled around the world performing plastic surgery on children with cleft lips and palates who would otherwise never be able to afford the operation, (although at the time I made the appointment I knew of none of this). Often times, children with facial deformities are shunned by their communities, especially in developing countries. By having these surgeries, the children would look normal could live normal lives instead of being outcasts.
This was our kind of doctor.
His compassion was palpable. He put both of us at ease right away and began talking about Scooter's condition. He explained that Scooter's cleft was not only in her soft palate as originally thought, but it extended a bit into her hard palate. He said that the old school of thought was to wait until the child was 2 or 3 years of age to have the first in a series of surgeries to fix the cleft palate and subsequent surgeries about a year apart until the cleft was repaired.
However, he said that doctors were finding that, if the initial surgery was done when the child was much younger that it often meant only one trip to the operating room instead of multiple surgeries. And as frightening and overwhelming as it was, we were all in. We wanted as few surgeries as possible for our baby.
Dr. Magee also explained that when there is a genetic abnormality or a cleft lip or palate present that the bone structure in the head is often malformed and can lead to other issues. He said that the probability was that Scooter would have multiple ear infections and would need tubes in her ears, as her Eustachian tubes would likely not drain properly.
We left his office feeling elated that we had found such an incredible surgeon on one hand and being terrified on the other hand. Our newborn little baby would be going in for her cleft palate repair when she was only 6 weeks old.
We had a lot on our minds as we made our way back to North Carolina, and it felt as though we held our breath the entire way.
Physically, she couldn't nurse. For that matter, she couldn't drink out of a regular bottle, either. We had to use a special bottle called a cleft palate nurser with special cross cut nipples in order to feed her. With the cleft in her soft palate, she couldn't get any suction in order to breastfeed or eat from a regular baby bottle, even though the hole was no bigger than my small fingernail. The cleft palate nursers are made of a soft, flexible plastic to make it easy to squeeze the milk out into the baby's mouth to make up for the lack of suction, and they worked fairly well once we got the hang of it. I hung onto the hope that she would one day nurse, and I made sure that all she had in her bottles was breast milk.
Seeing a baby with a cleft palate eat for the first time takes a person off guard, as milk invariably comes right out their little nose. It doesn't spray. It just sort of dribbles. But white is just not the color of what you're expecting to see come out of nostrils. Unfortunately, it also tends to make them cough and gag when they're eating, too. Bless her little heart. Eating was a chore for Scooter.
When she was a week to 10 days old, we loaded up the cleft palate nursers, the cross cut nipples, the breast pump and the kids and took off for Norfolk for Scooter's initial consultation with the plastic surgeon.
We stayed at the same little cruddy hotel with lots of character that we did each time we went up there. Don't get me wrong. It was clean. It was just a bit worn down and its furnishings were not updated at all, but its backyard was the beach of one of the little inlets of one of the bays in the area. For the life of me, I can't seem to remember the name of the bay it sat on, but I know it wasn't the Chesapeake, itself. But there were shells of all sorts, little crabs and fun little things that kept a little one's interest. There was even a real sunken ship!
We would pack up a cooler of picnic foods, grab the little tabletop propane grill and once or twice even the ice cream freezer and make it as close to a vacation as we could for the kids. As adults we were scared of what lie in store, and we didn't want the kids to pick up on that fear. So we did what we could to make it as special an occasion as possible.
We left NC the night before, so we would be able to see Dr. William Magee first thing in the morning. He and his wife founded Operation Smile and traveled around the world performing plastic surgery on children with cleft lips and palates who would otherwise never be able to afford the operation, (although at the time I made the appointment I knew of none of this). Often times, children with facial deformities are shunned by their communities, especially in developing countries. By having these surgeries, the children would look normal could live normal lives instead of being outcasts.
This was our kind of doctor.
His compassion was palpable. He put both of us at ease right away and began talking about Scooter's condition. He explained that Scooter's cleft was not only in her soft palate as originally thought, but it extended a bit into her hard palate. He said that the old school of thought was to wait until the child was 2 or 3 years of age to have the first in a series of surgeries to fix the cleft palate and subsequent surgeries about a year apart until the cleft was repaired.
However, he said that doctors were finding that, if the initial surgery was done when the child was much younger that it often meant only one trip to the operating room instead of multiple surgeries. And as frightening and overwhelming as it was, we were all in. We wanted as few surgeries as possible for our baby.
Dr. Magee also explained that when there is a genetic abnormality or a cleft lip or palate present that the bone structure in the head is often malformed and can lead to other issues. He said that the probability was that Scooter would have multiple ear infections and would need tubes in her ears, as her Eustachian tubes would likely not drain properly.
We left his office feeling elated that we had found such an incredible surgeon on one hand and being terrified on the other hand. Our newborn little baby would be going in for her cleft palate repair when she was only 6 weeks old.
We had a lot on our minds as we made our way back to North Carolina, and it felt as though we held our breath the entire way.
Sunday, April 10, 2011
That which changed our Life Before. Part 5
The Marine Corps rarely allowed families to go on deployments, and at the time my husband was active duty, the shortest accompanied tour was 18 months. Shortly after we found out we were expecting Scooter, The Hubster found out his military unit would be deploying for 6 months. He would leave in March and return in October, be home for 2 weeks and leave on an 18 month unaccompanied tour.
Although I hadn't had the amnio yet, we knew that there was a chance that Scooter would have the genetic problem Hopper had, so The Hubster told his commanding officer that he would be leaving active duty. To be home for only 2 weeks in a 2 year period was too much for our family, and when the results from the amniocentesis came in a few short weeks later, we were very thankful he'd made the decision to get out.
I can't describe how thankful I've been over the years. It's been so very difficult at times for us to go through what we've gone through together. I can't imagine having to have done it alone.
Scooter was born on my birthday that July. She was and is the best birthday gift I could have ever hoped for. She was absolutely gorgeous! She was a healthy 8 pounds 1 oz and had thick dark hair that stuck to her head in swirls. She looked like she'd had a professional finger wave done before making her grand entrance into the world by c-section.
I was a bit preoccupied with things like a pesky surgery, so The Hubster had the privilege of cutting her umbilical cord and accompanying her to have her vitals checked and to be looked over by a doctor. Like most babies, she was crying. It sounded more like a young kitten mewing than a cry, though. We found out later that it was due to tracheomalacia, a condition similar to her sister's laryngomalacia.
And while the weak cry that our youngest had was a bit distracting to The Hubster, it wasn't the situation that had his attention. For when she opened her little mouth all the way when crying, he noticed that she had a little hole above the uvula in the back of her throat. He said it looked slightly off, but it also looked somewhat normal.
Still. It took him off guard enough that he couldn't remember, if he had a hole above his own uvula. So while the nurses were busy with Scooter, and he was washing up in order to hold her, he looked in the chrome paper towel dispenser above the sink with his mouth wide open. There was no hole in his throat.
Scooter had a cleft of her soft palate, and we needed to head back up to Norfolk to have it evaluated.
So just a week or so after having Scooter by c-section, we were back on the road to Virginia.
Although I hadn't had the amnio yet, we knew that there was a chance that Scooter would have the genetic problem Hopper had, so The Hubster told his commanding officer that he would be leaving active duty. To be home for only 2 weeks in a 2 year period was too much for our family, and when the results from the amniocentesis came in a few short weeks later, we were very thankful he'd made the decision to get out.
I can't describe how thankful I've been over the years. It's been so very difficult at times for us to go through what we've gone through together. I can't imagine having to have done it alone.
Scooter was born on my birthday that July. She was and is the best birthday gift I could have ever hoped for. She was absolutely gorgeous! She was a healthy 8 pounds 1 oz and had thick dark hair that stuck to her head in swirls. She looked like she'd had a professional finger wave done before making her grand entrance into the world by c-section.
I was a bit preoccupied with things like a pesky surgery, so The Hubster had the privilege of cutting her umbilical cord and accompanying her to have her vitals checked and to be looked over by a doctor. Like most babies, she was crying. It sounded more like a young kitten mewing than a cry, though. We found out later that it was due to tracheomalacia, a condition similar to her sister's laryngomalacia.
And while the weak cry that our youngest had was a bit distracting to The Hubster, it wasn't the situation that had his attention. For when she opened her little mouth all the way when crying, he noticed that she had a little hole above the uvula in the back of her throat. He said it looked slightly off, but it also looked somewhat normal.
Still. It took him off guard enough that he couldn't remember, if he had a hole above his own uvula. So while the nurses were busy with Scooter, and he was washing up in order to hold her, he looked in the chrome paper towel dispenser above the sink with his mouth wide open. There was no hole in his throat.
Scooter had a cleft of her soft palate, and we needed to head back up to Norfolk to have it evaluated.
So just a week or so after having Scooter by c-section, we were back on the road to Virginia.
Tuesday, April 5, 2011
That which changed our Life Before. Part 2
When Hopper was born, she squeaked. She squeaked when she breathed in. She squeaked when she breathed out. It wasn't a soft little squeak like a mouse would make. It was much louder. Like a squeaky door hinge. She was diagnosed with a Stridor that was the result of Laryngomalacia. And by the time we were in the doctor's office in Norfolk 2.5 years later, The Hubster and I didn't hear it anymore. Well, we could hear it when she cried, but there was such a huge improvement that we really didn't hear it.
So when the pediatric cardiac surgeon came through the door and asked who was squeaking, The Hubster and I didn't even know what to say. He said that he could hear it through the closed door of the exam room across the hall in his office with the door closed. We were in shock. We honestly had gotten so used to it that we didn't even notice it anymore. Mom was shocked that we didn't hear it, because she said that she was surprised at how loud it still was after all these years.
The surgeon was unwilling to operate until we saw an ear, nose and throat doctor to find out what was causing the squeak. Because Hopper should have outgrown it by the age she was at the time. So we went to the ENT the next morning.
We were told that Hopper not only had the Laryngomalacia, which she had mostly outgrown, but also had paralyzed vocal cords. They could still vibrate, but they didn't open and close like they should, and that's why she squeaked. We were told that she should have had a tracheotomy tube at birth, and that we were lucky she was alive and doing as well as she was.
Boy, did that explain a lot! Like how she would turn blue and pass out when she cried when she was tiny. I took her to the pediatrician about it when she was little, and he said she was holding her breath to get attention and had a bit of a temper. That didn't sound quite right to me, but what did I know? I was overwhelmed with therapy and doctor appointments and dealing with The Hubster's 15 month deployment, so I didn't question it. I didn't insist on more testing to make sure, like I would now. I had to trust that the doctor knew what he was talking about. I thank the Good Lord that He protected Hopper. Things could have been so much worse.
The ENT told us that although we had been lucky up until that point that we still needed to be on guard. We had to make sure Hopper never got overheated or cried too hard, because her vocal cords could swell shut. If her vocal cords did swell shut, she would need to have an emergency tracheotomy.
So much for being able to breathe.
It was bad enough that she had a seizure once when she turned blue and passed out. The fact that we could have lost her shook us to the core. So when we went back to the surgeon later that day with the results, we were relieved to find out that he would not be performing heart surgery on Hopper. He said the risk of intubation far outweighed the risk of the heart defect that needed repaired. She would eventually need to have the surgery, but it could wait until her vocal cords grew enough there was no danger of intubation.
We felt like we could breathe again.
At least for a time.
So when the pediatric cardiac surgeon came through the door and asked who was squeaking, The Hubster and I didn't even know what to say. He said that he could hear it through the closed door of the exam room across the hall in his office with the door closed. We were in shock. We honestly had gotten so used to it that we didn't even notice it anymore. Mom was shocked that we didn't hear it, because she said that she was surprised at how loud it still was after all these years.
The surgeon was unwilling to operate until we saw an ear, nose and throat doctor to find out what was causing the squeak. Because Hopper should have outgrown it by the age she was at the time. So we went to the ENT the next morning.
We were told that Hopper not only had the Laryngomalacia, which she had mostly outgrown, but also had paralyzed vocal cords. They could still vibrate, but they didn't open and close like they should, and that's why she squeaked. We were told that she should have had a tracheotomy tube at birth, and that we were lucky she was alive and doing as well as she was.
Boy, did that explain a lot! Like how she would turn blue and pass out when she cried when she was tiny. I took her to the pediatrician about it when she was little, and he said she was holding her breath to get attention and had a bit of a temper. That didn't sound quite right to me, but what did I know? I was overwhelmed with therapy and doctor appointments and dealing with The Hubster's 15 month deployment, so I didn't question it. I didn't insist on more testing to make sure, like I would now. I had to trust that the doctor knew what he was talking about. I thank the Good Lord that He protected Hopper. Things could have been so much worse.
The ENT told us that although we had been lucky up until that point that we still needed to be on guard. We had to make sure Hopper never got overheated or cried too hard, because her vocal cords could swell shut. If her vocal cords did swell shut, she would need to have an emergency tracheotomy.
So much for being able to breathe.
It was bad enough that she had a seizure once when she turned blue and passed out. The fact that we could have lost her shook us to the core. So when we went back to the surgeon later that day with the results, we were relieved to find out that he would not be performing heart surgery on Hopper. He said the risk of intubation far outweighed the risk of the heart defect that needed repaired. She would eventually need to have the surgery, but it could wait until her vocal cords grew enough there was no danger of intubation.
We felt like we could breathe again.
At least for a time.
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