I know Miss K has not been on Amiodarone for over a year but recently the use of Grapefruit while taking Amiodarone was brought up on our Living with PJRT facebook group and it brought me to researching it a bit. I remembered when Miss K was on Amiodarone that our EP Cardiologist told us not to give her Grapefruit or any products of Grapefruit while she was taking it, I just listened to him and never gave it to her but I didn't ever look into the reasons why. Below you will find the smallest bit of research I was able to do on the subject, I only hope it is helpful to someone :).
In light of recent confusion about Amiodarone and Grapefruit I have be researching it hoping to help those of you who are still giving your babies Amiodarone :). All in all everything I found was full of words and talk that anyone without a medical degree could never fully understand lol, but I did find one, just one, very dummied down explanation about ingesting Grapefruit or any product of Grapefruit while taking Amiodarone. Here it is, I hope it helps your understanding!
Grapefruit juice appears to completely inhibit the metabolism of amiodarone to its major active metabolite, increases the AUC of amiodarone by 50% and increases the peak serum level by 84%, which may lead to toxicity. However, the effect of amiodarone on the PR and QTc intervals is apparently decreased, possibly due to reduced levels of the active metabolite.
Further study is needed. In the meantime, it may be prudent to suggest to patients that they avoid grapefruit juice.
http://www.medpill.info/amiodarone-and-grapefruit-juice-10176.htm
The studies I read said that in males it harms the testicles and in all patients, male and female, it can harm the urinary tracts and kidneys and the Grapefruit lessens the Amiodarone's effectiveness.
I hate the internet, research can be quite tough for me here lol, if anyone can find anything to read about this that is less confusing than what I found please feel free to share it in the comments here with a link to the site you found it on :).
12.31.2013
11.19.2013
11 Months SVT Free
I should be jumping for joy, happy as ever, smiling ear to ear, joyous, etc., etc., etc....but I'm NOT. I was all those things last month, and the month before, and the month before that. Each month SVT free is a huge accomplishment for this little girl, don't get me wrong I am EXTREMELY grateful for these past months and I pray with everything I have that we can keep this streak going. So why am I so down about it?
A little more than a month ago a fellow PJRT mom made the decision to take her 4 year old PJRT daughter off of all her medications, she had been SVT free for over a year and they felt it was time to see how she did on her own. Almost 6 weeks went by of nothing but good news, I admit, I got my hopes up for her and for Miss K. Any time a child is considered to have outgrown their PJRT I get my hopes up for Miss K's diagnosis. Almost 6 weeks of thinking we had more hope, another PJRT child had most likely outgrown her condition. Almost 6 weeks of no medications and her sweet mama breaks the news that her sweet little girl had been taken to the ER via ambulance having a severe SVT episode. She was put back on her medications and sent home stable, a few days later she was taken to the ER yet again having a severe SVT episode, her medications were adjusted and she spent over 12 hours in the ER as they watched her closely to be sure she would be OK, she was sent home on a higher dose of medications than what they had ended almost 6 weeks before. My heart broke. This terrified me. We are a little more than 6 months away from the date her EP Cardiologist said he would remove all medications if she stays SVT free until that date. What if she follows the same fate this little girl did?
Earlier this week another SVT mom made note in our facebook group that her 3 year old, who has been SVT free for over a year but, like Miss K, is still medicated, had her first SVT episode and was rushed to the hospital. Her medications had to be adjusted and she still had yet another SVT episode a day later. This mama had been hopeful, like us, that her daughter had outgrown her SVT and they had plans to take her off of her medications in the next month or so, now it is apparent she still needs the medications and at a higher dosage.
These two very recent experiences have completely dashed my hopes. I've always felt that we are walking on egg shells, so to speak. I've always had the possibility of an SVT episode on my mind, though pushed back as far as I can hoping I am wrong. Hearing about other children, who are 1-2 years older than Miss K, having such unexpected breakthrough SVT after so long being SVT free is a huge slap of reality right to my face.
Miss K is doing great. She's still experiencing moderate hair loss occasionally, and that's the weird part it's only occasionally, I've begun to think her iron levels may be dipping from lack of proper eating when she gets into her little eating issues and being on the Propranolol during these eating issues and iron dips makes her body take a harder hit than normal which is probably why she looses a lot of hair for a week or two and then stops for a bit. She has a cold right now, nothing serious just the sniffles and a bit of congestion, she fevered yesterday but only just a bit sitting around 99.8 degrees, a bit more tired than usual but otherwise seems fine.
IF Miss K makes it to 1 year SVT free we will be having a big party for her, no matter how long she may or may not stay SVT free, a year is wonderful and I want to make sure we celebrate it. I will not let reality's slap to the face stop me from keeping up hope, she has beaten a lot of odds and shown her EP Cardiologist that she is a very special little girl from day one, maybe, just maybe, she will be that different case that actually has outgrown her PJRT.
A little more than a month ago a fellow PJRT mom made the decision to take her 4 year old PJRT daughter off of all her medications, she had been SVT free for over a year and they felt it was time to see how she did on her own. Almost 6 weeks went by of nothing but good news, I admit, I got my hopes up for her and for Miss K. Any time a child is considered to have outgrown their PJRT I get my hopes up for Miss K's diagnosis. Almost 6 weeks of thinking we had more hope, another PJRT child had most likely outgrown her condition. Almost 6 weeks of no medications and her sweet mama breaks the news that her sweet little girl had been taken to the ER via ambulance having a severe SVT episode. She was put back on her medications and sent home stable, a few days later she was taken to the ER yet again having a severe SVT episode, her medications were adjusted and she spent over 12 hours in the ER as they watched her closely to be sure she would be OK, she was sent home on a higher dose of medications than what they had ended almost 6 weeks before. My heart broke. This terrified me. We are a little more than 6 months away from the date her EP Cardiologist said he would remove all medications if she stays SVT free until that date. What if she follows the same fate this little girl did?
Earlier this week another SVT mom made note in our facebook group that her 3 year old, who has been SVT free for over a year but, like Miss K, is still medicated, had her first SVT episode and was rushed to the hospital. Her medications had to be adjusted and she still had yet another SVT episode a day later. This mama had been hopeful, like us, that her daughter had outgrown her SVT and they had plans to take her off of her medications in the next month or so, now it is apparent she still needs the medications and at a higher dosage.
These two very recent experiences have completely dashed my hopes. I've always felt that we are walking on egg shells, so to speak. I've always had the possibility of an SVT episode on my mind, though pushed back as far as I can hoping I am wrong. Hearing about other children, who are 1-2 years older than Miss K, having such unexpected breakthrough SVT after so long being SVT free is a huge slap of reality right to my face.
Miss K is doing great. She's still experiencing moderate hair loss occasionally, and that's the weird part it's only occasionally, I've begun to think her iron levels may be dipping from lack of proper eating when she gets into her little eating issues and being on the Propranolol during these eating issues and iron dips makes her body take a harder hit than normal which is probably why she looses a lot of hair for a week or two and then stops for a bit. She has a cold right now, nothing serious just the sniffles and a bit of congestion, she fevered yesterday but only just a bit sitting around 99.8 degrees, a bit more tired than usual but otherwise seems fine.
IF Miss K makes it to 1 year SVT free we will be having a big party for her, no matter how long she may or may not stay SVT free, a year is wonderful and I want to make sure we celebrate it. I will not let reality's slap to the face stop me from keeping up hope, she has beaten a lot of odds and shown her EP Cardiologist that she is a very special little girl from day one, maybe, just maybe, she will be that different case that actually has outgrown her PJRT.
10.24.2013
Hair Loss
About 7 or 8 months ago I remember reading a post by a SVT mom talking about hair loss being linked with the use of Propranolol. I never thought much of it since Miss K wasn't having hair loss issues, I felt bad for her but didn't think to remember that post.
Fast forward about 4 months and you find me crying over a clump of Miss K's hair. I was taking a hair band out of her hair, I'm always gentle about this and the hair band was a soft no-pull one, but on this night a chunk of Miss K's hair came out with it. It was perfect, it looked as though I had taken a pair of scissors and cut the hair in a perfect square. There I was holding a lock of precious, sweet hair.
Fast forward another 2 or 3 months and you find me constantly dealing with hand fulls of hair each time I comb Miss K's hair, no matter if it is soft and tangle free or completely riddled with tangles and knots, no matter if it is wet or dry, Miss K's hair is coming out in clumps. She has a bald spot in the front that I thought was just genetics, except that there was hair there one day and then the next there wasn't, but I didn't really notice how fast it had gone nor did I really remember there being hair there at all, now looking back at pictures I see that there was hair there at one time and there's really no reason for her not to have hair there now.
I finally realized something was up. I got on all the facebook support pages I follow and asked around about hair loss being connected with either Propranolol or Digoxin, or maybe even a delayed side effect from Amiodarone, a long shot I know but I have been desperate to find a reason for her hair loss. Most of the mom's that answered had never heard of hair loss being connected to any of the three medications. But a choice few had heard of a link and were willing to share. Turns out I found the mom who mentioned hair loss and Propranolol months ago, she verified that her daughter had a hair loss problem off and on while taking the Propranolol, she couldn't tell why some months were better than others but she could confirm that her daughter's Cardiologist admitted that hair loss is a side effect of Propranolol, uncommon and not well known but still a side effect. Another mom commented that her daughter's Cardiologist also mentioned hair loss as a side effect of Prorpanolol. After reading these comments I dug through some more websites looking for this side effect to be noted somewhere and, amazingly, I finally found it, a site that has hair loss listed as uncommon and not well known but it is a side effect of Propranolol.
I will, of course, be asking our own EP Cardiologist and our Pediatrician, and maybe even our Pharmacist, just to make sure this is really what's going on with Miss K. I will update when I can. I am almost sure the Propranolol is the cause but I also know that low Iron and a lack of certain vitamins and minerals can cause hair loss as well and seeing that Miss K is not the greatest little eater these could certainly be part of the cause.
Fast forward about 4 months and you find me crying over a clump of Miss K's hair. I was taking a hair band out of her hair, I'm always gentle about this and the hair band was a soft no-pull one, but on this night a chunk of Miss K's hair came out with it. It was perfect, it looked as though I had taken a pair of scissors and cut the hair in a perfect square. There I was holding a lock of precious, sweet hair.
Fast forward another 2 or 3 months and you find me constantly dealing with hand fulls of hair each time I comb Miss K's hair, no matter if it is soft and tangle free or completely riddled with tangles and knots, no matter if it is wet or dry, Miss K's hair is coming out in clumps. She has a bald spot in the front that I thought was just genetics, except that there was hair there one day and then the next there wasn't, but I didn't really notice how fast it had gone nor did I really remember there being hair there at all, now looking back at pictures I see that there was hair there at one time and there's really no reason for her not to have hair there now.
I finally realized something was up. I got on all the facebook support pages I follow and asked around about hair loss being connected with either Propranolol or Digoxin, or maybe even a delayed side effect from Amiodarone, a long shot I know but I have been desperate to find a reason for her hair loss. Most of the mom's that answered had never heard of hair loss being connected to any of the three medications. But a choice few had heard of a link and were willing to share. Turns out I found the mom who mentioned hair loss and Propranolol months ago, she verified that her daughter had a hair loss problem off and on while taking the Propranolol, she couldn't tell why some months were better than others but she could confirm that her daughter's Cardiologist admitted that hair loss is a side effect of Propranolol, uncommon and not well known but still a side effect. Another mom commented that her daughter's Cardiologist also mentioned hair loss as a side effect of Prorpanolol. After reading these comments I dug through some more websites looking for this side effect to be noted somewhere and, amazingly, I finally found it, a site that has hair loss listed as uncommon and not well known but it is a side effect of Propranolol.
I will, of course, be asking our own EP Cardiologist and our Pediatrician, and maybe even our Pharmacist, just to make sure this is really what's going on with Miss K. I will update when I can. I am almost sure the Propranolol is the cause but I also know that low Iron and a lack of certain vitamins and minerals can cause hair loss as well and seeing that Miss K is not the greatest little eater these could certainly be part of the cause.
10.15.2013
10 Months SVT FREE!
And we're walking on egg shells. Waiting for the ball to drop. Panicking. Preparing. And all at the same time while we're also thanking God, rejoicing, feeling blessed, hoping and praying.
Almost a whole year SVT free. We never thought we'd see this. Of course, we know we need to consider the fact that Miss K has only gained 1 pound in this whole past year and just maybe her medications are just working really great because she's not getting heavier. But we can always hope that maybe she has outgrown her PJRT, or is slowly outgrowing it at any rate.
Miss K is still taking 3.2mL Propanolol 3 times a day and 1.2mL Digoxin 2 times a day.
The life of an SVT baby:
Syringes all over the house, both dirty and clean.
Medications piled up in her room, out of reach of course, but still visible so we don't forget to give them.
Empty medication bottles and boxes throughout the house, always at least one in the trash can on trash day.
An alarm set on both Mommy and Daddy's phones so we don't forget her afternoon Propanolol.
Stethoscopes in every room, though they are rarely used lately they are still there.
Heart rate App on both Mommy and Daddy's phones (cardiograph app).
Our favorite local pharmacy knowing Mommy's face and name, knowing exactly what I am there for each month.
Our favorite local pharmacist knowing and usually remembering without fail that Mommy prefers the Propanolol in 2 small bottles rather than 1 big bottle and that she prefers the prescription label for the Digoxin be placed on the bottle rather than the box.
Miss K understanding, and allowing, us to "hear" her by placing our ear to her chest and listening for a few seconds. (done about twice a day)
Miss K understanding, and allowing, us to place a hand over her heart and holding still long enough for us to feel her little heart beat. (done a few times a day)
Miss K knowing the word "medicine" and knowing exactly what it means.
Miss K having medications such a huge part of her daily routine to the point of her reminding us when it's time for medicine even when we forget.
Miss K finding play syringes in a dress-up doctors kit and telling her baby doll "time for medicine!" while putting said syringe into her baby doll's mouth and pushing the plunger.
Miss K finding play stethoscopes in a dress-up doctors kit and placing it on her own chest to listen and then placing it on her baby dolls chest, somehow putting it in the correct location every time.
Having to tell Grandma "No" for sugary sweets and drinks even though the other grandkids all have them at the moment.
Finding Sugar Free popsicles and treats in one Grandma's house set aside especially for Miss K.
Having to remind Grandpa's and Uncle's "no tipping upside down!" and "no tossing high into the air!", these things have NOT caused SVT yet but we aren't willing to chance it so we just plain don't allow it.
Doctors appointment reminders for Cardiology coming in over the phone every few months, set in Mommy's phone calendar, and written on the family calendars all over the house.
Avoiding illness like the plague, more paranoid than the average parent, praying to avoid fevers at all costs, staying home all the time, rarely getting an adventure at any public place especially during cold and flu season.
Being familiar too with Primary Children's Medical Center.
So many more things I could list if I could remember them. But we'll take all of it to get to keep our sweet little princess!
Lately I have been feeling so blessed, and then so guilty, about Miss K's last few quiet months. The guilt comes from knowing a few other sweet PJRT babies who are not as lucky as Miss K yet, they are still enduring a lot of trial and error with their medications and such and dealing with SVT and frequent Cardiologist visits. Though I know we have been there, Miss K was not been spared these trials in the slightest, but I almost feel like it's not fair that she is now mostly healthy and SVT free when they are still struggling daily :(. We pray for them all the time, and worry until we hear good news from them.
Almost a whole year SVT free. We never thought we'd see this. Of course, we know we need to consider the fact that Miss K has only gained 1 pound in this whole past year and just maybe her medications are just working really great because she's not getting heavier. But we can always hope that maybe she has outgrown her PJRT, or is slowly outgrowing it at any rate.
Miss K is still taking 3.2mL Propanolol 3 times a day and 1.2mL Digoxin 2 times a day.
The life of an SVT baby:
Syringes all over the house, both dirty and clean.
Medications piled up in her room, out of reach of course, but still visible so we don't forget to give them.
Empty medication bottles and boxes throughout the house, always at least one in the trash can on trash day.
An alarm set on both Mommy and Daddy's phones so we don't forget her afternoon Propanolol.
Stethoscopes in every room, though they are rarely used lately they are still there.
Heart rate App on both Mommy and Daddy's phones (cardiograph app).
Our favorite local pharmacy knowing Mommy's face and name, knowing exactly what I am there for each month.
Our favorite local pharmacist knowing and usually remembering without fail that Mommy prefers the Propanolol in 2 small bottles rather than 1 big bottle and that she prefers the prescription label for the Digoxin be placed on the bottle rather than the box.
Miss K understanding, and allowing, us to "hear" her by placing our ear to her chest and listening for a few seconds. (done about twice a day)
Miss K understanding, and allowing, us to place a hand over her heart and holding still long enough for us to feel her little heart beat. (done a few times a day)
Miss K knowing the word "medicine" and knowing exactly what it means.
Miss K having medications such a huge part of her daily routine to the point of her reminding us when it's time for medicine even when we forget.
Miss K finding play syringes in a dress-up doctors kit and telling her baby doll "time for medicine!" while putting said syringe into her baby doll's mouth and pushing the plunger.
Miss K finding play stethoscopes in a dress-up doctors kit and placing it on her own chest to listen and then placing it on her baby dolls chest, somehow putting it in the correct location every time.
Having to tell Grandma "No" for sugary sweets and drinks even though the other grandkids all have them at the moment.
Finding Sugar Free popsicles and treats in one Grandma's house set aside especially for Miss K.
Having to remind Grandpa's and Uncle's "no tipping upside down!" and "no tossing high into the air!", these things have NOT caused SVT yet but we aren't willing to chance it so we just plain don't allow it.
Doctors appointment reminders for Cardiology coming in over the phone every few months, set in Mommy's phone calendar, and written on the family calendars all over the house.
Avoiding illness like the plague, more paranoid than the average parent, praying to avoid fevers at all costs, staying home all the time, rarely getting an adventure at any public place especially during cold and flu season.
Being familiar too with Primary Children's Medical Center.
So many more things I could list if I could remember them. But we'll take all of it to get to keep our sweet little princess!
Lately I have been feeling so blessed, and then so guilty, about Miss K's last few quiet months. The guilt comes from knowing a few other sweet PJRT babies who are not as lucky as Miss K yet, they are still enduring a lot of trial and error with their medications and such and dealing with SVT and frequent Cardiologist visits. Though I know we have been there, Miss K was not been spared these trials in the slightest, but I almost feel like it's not fair that she is now mostly healthy and SVT free when they are still struggling daily :(. We pray for them all the time, and worry until we hear good news from them.
9.12.2013
Insomnia
Miss K has had a bad case of insomnia since we took her off of the Amiodarone. It wasn't a huge problem until recently.
Miss K started out just having about 1-2 nights a month of no sleep, she'd play in her crib in her room all night long keeping her Daddy and I awake listening to her but not able to do much about it. And then about 6 months ago she started having sleepless nights about once a week, at which point she was no longer in a crib but in a toddler bed but she was not able to open her bedroom door on her own so we just kept her room 100% toddler proof so she couldn't get hurt and didn't worry about her, we also were running a fan in our room to help Baby Brother sleep so we could barely hear Miss K in her room playing and thus were finally able to sleep through her noise. And then about 4 months ago she started having her sleepless nights about 2-3 times a week. About 3 months ago she learned how to open her door, we resorted to locking the door so she couldn't get out. We needed to keep her in her room so she couldn't hurt herself with mischief she may cause in the rest of the house alone. A little more than a month ago the sleepless nights went from occasional to nearly EVERY night. At her grandmother's house the only way to keep her safe during the night was to put her in a pack and play (play pen) to sleep because no bedrooms are toddler safe enough for her to be wandering them alone, it's canning season so we have been at Grandma's house A LOT. She recently learned how to climb out of a pack and play. This week, after a particularly bad night, she learned how to unlock her bedroom door on her own. I spent a long night listening for her and putting her back into bed all night long as she wandered the house and got into mischief of all kinds. I put up the baby gate AND locked her bedroom door. She climbed the baby gate. We can no longer contain her without drastic measures. She climbs out of cribs, she climbs baby gates, she opens all doors, she unlocks all doors, she can even undo child safe locks on cupboards and drawers. She's TWO years old, at this age Big Brother was an angel, at the time I didn't think so but now I realize he really was an angel, ESPECIALLY compared to Miss K.
We have been running a fan in her room for white noise since she was a baby. We thought maybe that was part of what might be keeping her up at night so we tried a few nights without the fan, turns out she sleeps worse without the fan than she does with it. I tried cutting naps down to 30 min. to an hour, that didn't work so I tried cutting nap out completely, this only resulted in a VERY unhappy little girl since she was no longer getting ANY sleep. I have been rubbing Lavender Essential Oils on the bottoms of her feet and on her forehead every night since she started the insomnia, until recently it actually worked quite well, now it isn't doing ANYTHING for her. We also had "calming bracelets", they worked better than the Lavender oil for a bit, now they also don't work for her. Last night I tried using the Lavender oil in a diffuser AND I rubbed doTERRA's Balance on the bottoms of her feet and her forehead. She actually slept for the first time in a long time, though I have no idea if it was the diffuser or the Balance. Since I borrowed the diffuser from a friend just for the night I will be returning it today and we shall see if it was that or the Balance that made her sleep. If we have yet another bad night I'll be purchasing a diffuser of my own, and if that doesn't work then I'll know it was just Miss K finally tiring out for a bit. My next plan of action to get her sleeping is to try doTERRA's Serenity, and then as a last resort I would like to try Melatonin if her EP Cardiologist clears it as safe, I put a call in to him today to make sure before I try using it and am now waiting on a return call.
As far as keeping her contained goes...our door knobs are lever knobs, not round or oval ones that you turn. We went to The Home Depot and purchased a lever knob safety latch system only to get home and find that if placed inside her door it locks us out permanently and we can only get into her room through her outside window, but it won't fit on the outside of her door because of the door jamb so that was a bust, we will be returning the safety latch tonight. Our other options are to purchase a round knob and replace her lever knob with it, though this only works until she learns to turn a round knob, which puts us to a point of needing to put the knob on backwards so the lock is on the outside. Our only other option is to put an eye hook in on the outside and latching her in, but I'm afraid this will only work until she gets strong enough, or determined enough, to pull the screws out of the door.
Last night Miss K slept, whether from exhaustion or because one of the Essential Oils worked, but she was awake at the crack of dawn wandering the house while the rest of us slept. And, as if she wasn't driving me crazy enough as it was, she decided Big Brother needed to join her in her wanderings, she had him awake soon after she got up, she wandered into his room to climb in his bed with him to wake him so she'd have someone to play with. Big Brother likes his sleep, he wasn't happy to be woken by his little sister before he was ready to be awake.
Miss K started out just having about 1-2 nights a month of no sleep, she'd play in her crib in her room all night long keeping her Daddy and I awake listening to her but not able to do much about it. And then about 6 months ago she started having sleepless nights about once a week, at which point she was no longer in a crib but in a toddler bed but she was not able to open her bedroom door on her own so we just kept her room 100% toddler proof so she couldn't get hurt and didn't worry about her, we also were running a fan in our room to help Baby Brother sleep so we could barely hear Miss K in her room playing and thus were finally able to sleep through her noise. And then about 4 months ago she started having her sleepless nights about 2-3 times a week. About 3 months ago she learned how to open her door, we resorted to locking the door so she couldn't get out. We needed to keep her in her room so she couldn't hurt herself with mischief she may cause in the rest of the house alone. A little more than a month ago the sleepless nights went from occasional to nearly EVERY night. At her grandmother's house the only way to keep her safe during the night was to put her in a pack and play (play pen) to sleep because no bedrooms are toddler safe enough for her to be wandering them alone, it's canning season so we have been at Grandma's house A LOT. She recently learned how to climb out of a pack and play. This week, after a particularly bad night, she learned how to unlock her bedroom door on her own. I spent a long night listening for her and putting her back into bed all night long as she wandered the house and got into mischief of all kinds. I put up the baby gate AND locked her bedroom door. She climbed the baby gate. We can no longer contain her without drastic measures. She climbs out of cribs, she climbs baby gates, she opens all doors, she unlocks all doors, she can even undo child safe locks on cupboards and drawers. She's TWO years old, at this age Big Brother was an angel, at the time I didn't think so but now I realize he really was an angel, ESPECIALLY compared to Miss K.
We have been running a fan in her room for white noise since she was a baby. We thought maybe that was part of what might be keeping her up at night so we tried a few nights without the fan, turns out she sleeps worse without the fan than she does with it. I tried cutting naps down to 30 min. to an hour, that didn't work so I tried cutting nap out completely, this only resulted in a VERY unhappy little girl since she was no longer getting ANY sleep. I have been rubbing Lavender Essential Oils on the bottoms of her feet and on her forehead every night since she started the insomnia, until recently it actually worked quite well, now it isn't doing ANYTHING for her. We also had "calming bracelets", they worked better than the Lavender oil for a bit, now they also don't work for her. Last night I tried using the Lavender oil in a diffuser AND I rubbed doTERRA's Balance on the bottoms of her feet and her forehead. She actually slept for the first time in a long time, though I have no idea if it was the diffuser or the Balance. Since I borrowed the diffuser from a friend just for the night I will be returning it today and we shall see if it was that or the Balance that made her sleep. If we have yet another bad night I'll be purchasing a diffuser of my own, and if that doesn't work then I'll know it was just Miss K finally tiring out for a bit. My next plan of action to get her sleeping is to try doTERRA's Serenity, and then as a last resort I would like to try Melatonin if her EP Cardiologist clears it as safe, I put a call in to him today to make sure before I try using it and am now waiting on a return call.
As far as keeping her contained goes...our door knobs are lever knobs, not round or oval ones that you turn. We went to The Home Depot and purchased a lever knob safety latch system only to get home and find that if placed inside her door it locks us out permanently and we can only get into her room through her outside window, but it won't fit on the outside of her door because of the door jamb so that was a bust, we will be returning the safety latch tonight. Our other options are to purchase a round knob and replace her lever knob with it, though this only works until she learns to turn a round knob, which puts us to a point of needing to put the knob on backwards so the lock is on the outside. Our only other option is to put an eye hook in on the outside and latching her in, but I'm afraid this will only work until she gets strong enough, or determined enough, to pull the screws out of the door.
Last night Miss K slept, whether from exhaustion or because one of the Essential Oils worked, but she was awake at the crack of dawn wandering the house while the rest of us slept. And, as if she wasn't driving me crazy enough as it was, she decided Big Brother needed to join her in her wanderings, she had him awake soon after she got up, she wandered into his room to climb in his bed with him to wake him so she'd have someone to play with. Big Brother likes his sleep, he wasn't happy to be woken by his little sister before he was ready to be awake.
8.28.2013
8.12.2013
Miss K is 2 Years Old
Very bitter sweet. I am so proud of my baby girl for hitting her 2nd birthday and doing so well in the past year! Of course I am happy she is growing and changing into a beautiful little girl. But I am so sad to see the baby leave and the little girl come. She has been our "baby girl" for 2 years, we still call her baby girl around here, but in the past few weeks she has changed a lot in many ways, not only does she no longer act like a baby but she also no longer looks like a baby. She has completely lost the baby looks and gained the little girl looks, but of course she is still adorable.
-XL.jpg)
-F.jpg)
Miss K now weighs 20.4 pounds and is 33.4 inches tall.
She is doing great! We have now made it almost 8 months SVT free, a very amazing big deal for Miss K. The most amazing part is the 2 fevers she has endured and made it through with no SVT, her heart rate barely went up enough for us to even notice a faster rhythm than normal. She has also made it through not 1 but 2 missed doses of Propanolol and had absolutely NO SVT, quite the change from her normal SVT episodes within 24 hours of the missed dose! I posted about missing a dose just before July 24th but I have yet to mention the next missed dose...just this past weekend while visiting her grandparents, Daddy was out of town and Mommy was quite tired and distracted and somehow completely forgot the morning dose of both Propanolol and Digoxin, I didn't realize I had missed them until around 1:30PM, yes that's right it took clear until afternoon and around the time for her usual 2nd dose for the day before I realized we had missed her morning dose. I opted to just consider the Propanolol afternoon dose skipped and gave her what would have been her normal morning dose at that time, then at bedtime I gave her her evening dose of both. I worried that since we had missed a dose barely a week before that she would have SVT from this missed dose but I was pleasantly surprised to never catch any SVT :o). I know without a doubt her EP Cardiologist is going to love hearing this news.
Miss K is our amazingly mischievous little princess. She is into every kind of mischief possible, things her older brother never would have dreamed up doing she is quick to discover and is great at making Mommy go completely nuts throughout the day. She is very active and very fast, before I can get one mess of hers cleaned up she is making/into another mess. She is adorably lovable and full of snuggly hugs. She loves to be snuggled and loved on, when she's not too busy anyway. She is a princess without a doubt. She loves to play dress up, take care of her baby dolls, have her nails painted, have Mommy put eye shadow on her, wear jewelry, have her hair done, were hair bows and flowers, she absolutely loves to wear dresses, and her favorite and most preferred color is PINK.
-XL.jpg)
-F.jpg)
She is doing great! We have now made it almost 8 months SVT free, a very amazing big deal for Miss K. The most amazing part is the 2 fevers she has endured and made it through with no SVT, her heart rate barely went up enough for us to even notice a faster rhythm than normal. She has also made it through not 1 but 2 missed doses of Propanolol and had absolutely NO SVT, quite the change from her normal SVT episodes within 24 hours of the missed dose! I posted about missing a dose just before July 24th but I have yet to mention the next missed dose...just this past weekend while visiting her grandparents, Daddy was out of town and Mommy was quite tired and distracted and somehow completely forgot the morning dose of both Propanolol and Digoxin, I didn't realize I had missed them until around 1:30PM, yes that's right it took clear until afternoon and around the time for her usual 2nd dose for the day before I realized we had missed her morning dose. I opted to just consider the Propanolol afternoon dose skipped and gave her what would have been her normal morning dose at that time, then at bedtime I gave her her evening dose of both. I worried that since we had missed a dose barely a week before that she would have SVT from this missed dose but I was pleasantly surprised to never catch any SVT :o). I know without a doubt her EP Cardiologist is going to love hearing this news.
Miss K is our amazingly mischievous little princess. She is into every kind of mischief possible, things her older brother never would have dreamed up doing she is quick to discover and is great at making Mommy go completely nuts throughout the day. She is very active and very fast, before I can get one mess of hers cleaned up she is making/into another mess. She is adorably lovable and full of snuggly hugs. She loves to be snuggled and loved on, when she's not too busy anyway. She is a princess without a doubt. She loves to play dress up, take care of her baby dolls, have her nails painted, have Mommy put eye shadow on her, wear jewelry, have her hair done, were hair bows and flowers, she absolutely loves to wear dresses, and her favorite and most preferred color is PINK.
8.06.2013
Please forgive the mess...
A week ago I made the huge mistake of trying out a new blog template...it resulted in disaster :o(. The template loaded wrong and ended up deleting all my page elements except a crazy old "about me" section, the blog posts list and, of course, the blog posts themselves. I cannot get any of the other stuff back :o(.
So bear with me in the next few days/weeks as I try to put this blog back together again. Things will change, I guarantee I won't be able to find all the websites and other blogs I had listed :o( at least not for a little while anyway.
On to better news...I will be taking a minute in a day or two (or three or four lol) to update everyone on Miss K now that she's turning 2 this week...yes that's right, Miss K is turning 2 YEARS OLD! I can't believe she's growing up so fast. Check back often for her update :o).
So bear with me in the next few days/weeks as I try to put this blog back together again. Things will change, I guarantee I won't be able to find all the websites and other blogs I had listed :o( at least not for a little while anyway.
On to better news...I will be taking a minute in a day or two (or three or four lol) to update everyone on Miss K now that she's turning 2 this week...yes that's right, Miss K is turning 2 YEARS OLD! I can't believe she's growing up so fast. Check back often for her update :o).
7.28.2013
Bradycardic Episodes Update...
We finally got a call from Miss K's EP Cardiologist, it took a few days because of our state holiday and then I was out of town and outside of mobile service so I didn't get to speak with him directly, I just received the message this afternoon. The Holter Monitor reading came in and he looked through it thoroughly, Miss K does indeed drop her heart rate to the low 50's very occasionally but never for more than a second or so, he said the longest her heart rate was in the 50's was about 1.3 seconds and her average heart rate was 92 BPM. This is all good, everything he expects to see in a child taking 2 Beta Blockers.
I am relieved to hear that she is OK and no SVT was caught with the monitor either, such a huge relief!
As of right now she is to stay on the same 3.2 mL 3x daily Propanolol and 1.2 mL 2x daily Digoxin. She will be seeing him in September for a follow up, I am a bit disappointed to be taking her in since I had hoped to stay away from a visit for a year but her EP Cardiologist feels he should see her at the 6 month mark to see how things are going and talk about future medication changes. He likes to have a game plan and it's time to talk about what we need to do in the future.
On a side note, last week with all the craziness of packing to go on a family camping trip I completely forgot to issue Miss K's afternoon dose of Propanolol Tuesday. We waited on egg shells the next few days, while camping, expecting an SVT episode because she has always had SVT after skipping a dose, I was terrified of being out in the middle of nowhere with no cell phone service and 30 minutes from the nearest hospital knowing that we had skipped a dose and SVT was possibly inevitable. We checked her heart rate constantly throughout the week and weekend and were extremely shocked to never catch any SVT! I am amazed at how far our sweet little girl has come. She is doing so great and kicking her PJRT in the butt :).
And while camping I noticed at least 1 new molar coming in, this means the cause of her tired moments and off times was most likely teething, I'm so glad to have found a reason for her to have been acting out of sorts!
I am relieved to hear that she is OK and no SVT was caught with the monitor either, such a huge relief!
As of right now she is to stay on the same 3.2 mL 3x daily Propanolol and 1.2 mL 2x daily Digoxin. She will be seeing him in September for a follow up, I am a bit disappointed to be taking her in since I had hoped to stay away from a visit for a year but her EP Cardiologist feels he should see her at the 6 month mark to see how things are going and talk about future medication changes. He likes to have a game plan and it's time to talk about what we need to do in the future.
On a side note, last week with all the craziness of packing to go on a family camping trip I completely forgot to issue Miss K's afternoon dose of Propanolol Tuesday. We waited on egg shells the next few days, while camping, expecting an SVT episode because she has always had SVT after skipping a dose, I was terrified of being out in the middle of nowhere with no cell phone service and 30 minutes from the nearest hospital knowing that we had skipped a dose and SVT was possibly inevitable. We checked her heart rate constantly throughout the week and weekend and were extremely shocked to never catch any SVT! I am amazed at how far our sweet little girl has come. She is doing so great and kicking her PJRT in the butt :).
And while camping I noticed at least 1 new molar coming in, this means the cause of her tired moments and off times was most likely teething, I'm so glad to have found a reason for her to have been acting out of sorts!
 |
| Our dirty little princess enjoying playing in the dirt while camping this past weekend. |
7.23.2013
7 Months SVT Free with a Twist...
Yahooo!!! We have made it to 7 months SVT free! Such a great feeling! And she even experienced a 3-4 day stretch of high fever (ranging from 102-104 degrees) with no other symptoms and made it through SVT free :).
On a bad note:
Miss K suddenly started having some off days a few weeks ago, she is a very active child full of mischeif on any normal day but a few weeks back she started having days here and there where she's listless, extra tired, begging to be held and snuggled, and has a huge lack of energy. I'm used to a little girl who never sits still, but lately she has had a lot of days of curling up on the couch with her blanket and begging for a movie, her eyes say a lot about how she feels and during these times of listlessness her eyes say she feels off in some way.
I always pull out the stethoscope and my phone (with my Cardiograph app on it) and check her heart rate during these down times, my first thought when this all started was that she was experiencing SVT, I was quite wrong. Usually during these odd moments her heart rate was below her normal range but not in a bad way, I just thought it was slow because she hadn't been active, that is until a week ago when I checked her heart rate to find her beating in the mid to low 50's. Anything below 80 worries me with her, and until now she's never really dipped below the mid 90's, so 50's was scary. I called the Cardiology nurse and asked her how low of a heart rate was too low, I let her know Miss K was in the mid to low 50's at the moment and I was a bit concerned. She didn't seem too concerned herself though, which calmed me quite a bit, my main reason for calling was to ask Miss K's EP Cardiologist if he thought I should bring her in to see him at the 6 month mark or if he thought she was fine and we could wait a whole year like I had origionally planned. The nurse was baffled by this question, I guess the charts in front of her showed Dr. P still wanted to see her every 2 months and I was 2 months late on fulfilling that request (I'm almost positive she was looking at Miss K's 2011 charts rather than 2012 and 13 charts), she refused to believe me when I told her we were on a 6 month schedule now and that I was given the OK to wait a year if I felt good about it. I ended up hanging up with her strict instructions to call scheduling and get Miss K in for an appointment NOW. I then called scheduling and told them Miss K needed to see Dr. P ASAP, they looked at her charts before bringing up the calendar and then the confusion began. In their notes Dr. P had asked that we come in every 6 months, just like I told the nurse, they didn't want to schedule Miss K to come in until September. I told them the nurse asked that we be seen ASAP so they told me they would call Dr. P themselves and ask him what he perferred we do. I waited all afternoon and into the next morning to hear back from them, instead of scheduling calling me back I got a personal phone call from Dr. P himself. This always worries me, Dr. P only calls me personally when there is something concerning he needs to talk with me about (except when we have lab work done and he's reporting the results, which he always does personally). He was a bit concerned about the low heart rate, though he was speaking with me directly because he wanted to know when the last time we refilled her medications was, he wondered if we had been issued a bad bottle of Digoxin. This was a good possibility since her listless moments started soon after we refilled her medications last. He ruled out Digoxin toxicity over the phone when he read her chart and realized she has been on the same dose since last October, but he wanted to be 100% sure this was not the case so he asked me to bring her in for an EKG the next day as he was worried that she may be having some Bradycardic spells. And knowing children like he does he told me he'd order a Holter Monitor to send us home with because EKG's only show what's going on at that moment and if the child is healthy and fine, or throwing a tantrum, we won't see what the issue is in other situations.
Somehow this was the perfect time to be requested to head down to PCMC. We were already headed down there the next day to bring Baby Brother in for his first Urology visit (more on that below) thus making it easy for us to leave just an hour earlier and pop in at the Cardiology clinic for a quick visit with Dr. P. Miss K just happened to be having one of her off days on this day, a good thing for Dr. P to see. Things went downhill the minute we entered the clinic though (not in a bad medical way I assure you). Miss K was terrified of the room, terrified of the exam table, terrified of the nurse, and even more terrified of the EKG machine and its "stickers" and wires. When we laid her on the table she started screaming, the nurse had quite the struggle getting the stickers placed on her chest and belly as Miss K kicked and screamed through it. We tried everything from snuggling her to encouraging her to touch and hold a sticker herself to putting EKG stickers on her baby doll (this only resulted in more terrified screams as she was afraid of what the stickers would do to her baby). Finally the nurse decided she was part of the problem and she left the room for a minute, apparently this wasn't a big enough part of the issue as Miss K continued to scream and kick and still refused to calm down enough for us to get a good reading. The nurse came back with a stuffed lamb and a sucker in hopes of calming Miss K down with bribery, it didn't work she refused both very adamantly. I offered her snacks from the diaper bag but was also turned down, and she screamed harder when we got the bubbles out and blew a few for her. We finally gave up and took what we could get, her heart rate was ranging from 120's to 140's during this tantrum. Dr. P came in soon after the nurse printed a reading from the EKG machine and assured us he could not see any sign of Digoxin toxicity. He felt she is probably fine and that maybe I was off with my counting of her heart rate or it was just some fluke that was nothing to worry about, he admitted though that maybe she has outgrown the PJRT just enough (but not completely) to maybe not need so much medication so we talked about lowering her dose on one or both the Propanolol and Digoxin after further evaluation. But to ease my mind and to really be sure himself he still sent us home with a Holter Monitor fitted to Miss K. She was not happy about that machine either, she screamed and kicked right out of my arms while the nurse was trying to get it all set up. Somehow she forgot about it very quickly though and amazingly never really touched it through the 24 hours she had to wear it.
I sent the Holter Monitor back yesterday. I have no idea how soon we'll hear from Dr. P with the results, Tomorrow is our state holiday (Pioneer Day) so unless UPS gets the packaged delivered today and Dr. P somehow gets a chance to read it today I will most likely not hear back from him until Thursday or Friday, this poses as a sort of problem though because we will be out of town camping up a canyon and won't have cell phone service so all I can do is hope he calls today or doesn't call us until next Monday. I will keep you all updated with the results.
I promised an explanation about Baby Brother seeing Urology:
I mentioned in previous posts about Baby Brother being born with Hypospadias. Our Pediatrician told us not to pursue it until he was nearly a year old because PCMC wouldn't let anyone do any surgery on a child younger than 12 months (unless it's life saving, of course). I decided to go against him and called and made an appointment with Urology months ago, I knew it would be a long wait to get in and figured we should get the ball rolling now rather than later. This past Friday was our clinic visit to see what the Urologist had to say about the matter. We absolutely loved the guy, he was old and funny and full of information. Turns out he much prefers to do the surgery at around 6 months old, and it's a mild, non invasive surgery so PCMC lets him do so. We barely spoke with him 10 minutes when he was ushering us to his surgery nurse to schedule Baby Brother for his very first (and hopefully last) surgery. He will be going in to have his Hypospadias corrected on September 6th. To say I'm nervous would be an understatement. I'm terrified of handing my baby over to be put under anesthesia and cut on. The next 6 weeks are going to be nerve wracking for me, I'm going to have to try to stay busy to keep from thinking about it.
On a bad note:
Miss K suddenly started having some off days a few weeks ago, she is a very active child full of mischeif on any normal day but a few weeks back she started having days here and there where she's listless, extra tired, begging to be held and snuggled, and has a huge lack of energy. I'm used to a little girl who never sits still, but lately she has had a lot of days of curling up on the couch with her blanket and begging for a movie, her eyes say a lot about how she feels and during these times of listlessness her eyes say she feels off in some way.
I always pull out the stethoscope and my phone (with my Cardiograph app on it) and check her heart rate during these down times, my first thought when this all started was that she was experiencing SVT, I was quite wrong. Usually during these odd moments her heart rate was below her normal range but not in a bad way, I just thought it was slow because she hadn't been active, that is until a week ago when I checked her heart rate to find her beating in the mid to low 50's. Anything below 80 worries me with her, and until now she's never really dipped below the mid 90's, so 50's was scary. I called the Cardiology nurse and asked her how low of a heart rate was too low, I let her know Miss K was in the mid to low 50's at the moment and I was a bit concerned. She didn't seem too concerned herself though, which calmed me quite a bit, my main reason for calling was to ask Miss K's EP Cardiologist if he thought I should bring her in to see him at the 6 month mark or if he thought she was fine and we could wait a whole year like I had origionally planned. The nurse was baffled by this question, I guess the charts in front of her showed Dr. P still wanted to see her every 2 months and I was 2 months late on fulfilling that request (I'm almost positive she was looking at Miss K's 2011 charts rather than 2012 and 13 charts), she refused to believe me when I told her we were on a 6 month schedule now and that I was given the OK to wait a year if I felt good about it. I ended up hanging up with her strict instructions to call scheduling and get Miss K in for an appointment NOW. I then called scheduling and told them Miss K needed to see Dr. P ASAP, they looked at her charts before bringing up the calendar and then the confusion began. In their notes Dr. P had asked that we come in every 6 months, just like I told the nurse, they didn't want to schedule Miss K to come in until September. I told them the nurse asked that we be seen ASAP so they told me they would call Dr. P themselves and ask him what he perferred we do. I waited all afternoon and into the next morning to hear back from them, instead of scheduling calling me back I got a personal phone call from Dr. P himself. This always worries me, Dr. P only calls me personally when there is something concerning he needs to talk with me about (except when we have lab work done and he's reporting the results, which he always does personally). He was a bit concerned about the low heart rate, though he was speaking with me directly because he wanted to know when the last time we refilled her medications was, he wondered if we had been issued a bad bottle of Digoxin. This was a good possibility since her listless moments started soon after we refilled her medications last. He ruled out Digoxin toxicity over the phone when he read her chart and realized she has been on the same dose since last October, but he wanted to be 100% sure this was not the case so he asked me to bring her in for an EKG the next day as he was worried that she may be having some Bradycardic spells. And knowing children like he does he told me he'd order a Holter Monitor to send us home with because EKG's only show what's going on at that moment and if the child is healthy and fine, or throwing a tantrum, we won't see what the issue is in other situations.
Somehow this was the perfect time to be requested to head down to PCMC. We were already headed down there the next day to bring Baby Brother in for his first Urology visit (more on that below) thus making it easy for us to leave just an hour earlier and pop in at the Cardiology clinic for a quick visit with Dr. P. Miss K just happened to be having one of her off days on this day, a good thing for Dr. P to see. Things went downhill the minute we entered the clinic though (not in a bad medical way I assure you). Miss K was terrified of the room, terrified of the exam table, terrified of the nurse, and even more terrified of the EKG machine and its "stickers" and wires. When we laid her on the table she started screaming, the nurse had quite the struggle getting the stickers placed on her chest and belly as Miss K kicked and screamed through it. We tried everything from snuggling her to encouraging her to touch and hold a sticker herself to putting EKG stickers on her baby doll (this only resulted in more terrified screams as she was afraid of what the stickers would do to her baby). Finally the nurse decided she was part of the problem and she left the room for a minute, apparently this wasn't a big enough part of the issue as Miss K continued to scream and kick and still refused to calm down enough for us to get a good reading. The nurse came back with a stuffed lamb and a sucker in hopes of calming Miss K down with bribery, it didn't work she refused both very adamantly. I offered her snacks from the diaper bag but was also turned down, and she screamed harder when we got the bubbles out and blew a few for her. We finally gave up and took what we could get, her heart rate was ranging from 120's to 140's during this tantrum. Dr. P came in soon after the nurse printed a reading from the EKG machine and assured us he could not see any sign of Digoxin toxicity. He felt she is probably fine and that maybe I was off with my counting of her heart rate or it was just some fluke that was nothing to worry about, he admitted though that maybe she has outgrown the PJRT just enough (but not completely) to maybe not need so much medication so we talked about lowering her dose on one or both the Propanolol and Digoxin after further evaluation. But to ease my mind and to really be sure himself he still sent us home with a Holter Monitor fitted to Miss K. She was not happy about that machine either, she screamed and kicked right out of my arms while the nurse was trying to get it all set up. Somehow she forgot about it very quickly though and amazingly never really touched it through the 24 hours she had to wear it.
I sent the Holter Monitor back yesterday. I have no idea how soon we'll hear from Dr. P with the results, Tomorrow is our state holiday (Pioneer Day) so unless UPS gets the packaged delivered today and Dr. P somehow gets a chance to read it today I will most likely not hear back from him until Thursday or Friday, this poses as a sort of problem though because we will be out of town camping up a canyon and won't have cell phone service so all I can do is hope he calls today or doesn't call us until next Monday. I will keep you all updated with the results.
I promised an explanation about Baby Brother seeing Urology:
I mentioned in previous posts about Baby Brother being born with Hypospadias. Our Pediatrician told us not to pursue it until he was nearly a year old because PCMC wouldn't let anyone do any surgery on a child younger than 12 months (unless it's life saving, of course). I decided to go against him and called and made an appointment with Urology months ago, I knew it would be a long wait to get in and figured we should get the ball rolling now rather than later. This past Friday was our clinic visit to see what the Urologist had to say about the matter. We absolutely loved the guy, he was old and funny and full of information. Turns out he much prefers to do the surgery at around 6 months old, and it's a mild, non invasive surgery so PCMC lets him do so. We barely spoke with him 10 minutes when he was ushering us to his surgery nurse to schedule Baby Brother for his very first (and hopefully last) surgery. He will be going in to have his Hypospadias corrected on September 6th. To say I'm nervous would be an understatement. I'm terrified of handing my baby over to be put under anesthesia and cut on. The next 6 weeks are going to be nerve wracking for me, I'm going to have to try to stay busy to keep from thinking about it.
Subscribe to:
Posts (Atom)