It's been a long 3 days for this Momma! I.am.exhausted. All I can do at this point is pray I can stay healthy through this!
Big Brother got a bad cold over the weekend, he never fevered but had a very bad, though inconsistent, cough and bad congestion and runny nose. Sadly this cold resulted in a possible ear infection, I took him into the Pediatrician just to be sure he didn't have something really nasty that Miss K might get when we found his ear was starting to show signs of infection :o(. On the good side it did get Big Brother on Amoxacillin, as much as I hate medicating my children for any reason I really don't wish to have one suffering during Christmas or worse end up in Urgent/After Hours care away from home. Putting Big Brother on Amoxacillin now, even though he doesn't have an infection yet, will help us through the holidays. Usually the Pediatrician would have had me watch him close for a week and schedule a follow up for next week to make sure the ear did not turn into an infected sight but our Pediatrician is all awesomeness and insisted he did not want us in Urgent care with an ear infection on Christmas :o).
Worse...Daddy came home feeling quite sick Monday evening. He spent the night with severe chills that literally shook our bed all night long, and he coughed all night long and vomited and complained of muscle aches, a headache, and a sore throat. Tuesday he was up and gone before any of us got up, he had to take a 2 hour trip to see a job sight. I hoped this meant he would be just fine but I was beyond wrong. He came home from the trip hours before quitting time and curled up on the couch to die. I sent him to the after hours clinic to see what he had, we have to keep Miss K healthy if we can! The Dr. there told him it was definitely Viral and she was quite positive it is Influenza, even though all of us got the Flu shot back in October :o(. So the Dr. took a nose culture and sent it in to be tested promising to call him this morning and let him know what the results were. He spent all Tuesday afternoon, evening and night on the couch with chills and a fever and commenced with the coughing, nose blowing, congestion, and vomiting...and added Diarrhea to the symptoms. It's amazing how one virus can cause every symptom in the book to happen all at once! This morning found Daddy still on the couch, way too sick to go in to work. We never heard from the Dr. all day about his test results so this evening Daddy called the clinic and asked, they told him they'd call back in a bit...we waited 2 hours and called again to finally hear that he does indeed have Influenza :o(. And the Dr. that saw him was not on call tonight so he couldn't talk to her, she promised to prescribe Tamaflu for the rest of us in the house to protect us from his virus but because she wasn't in the clinic tonight we have to wait until morning to get that taken care of. I have no confidence this will happen so if we haven't heard back from her by 9:00am I will be calling my Obstetrician and asking him if he can prescribe Tamaflu for me and then I will also be calling our Pediatrician in hopes of him being able to prescribe it for both kids, to heck with the after hours clinic Dr.!
Miss K woke up running a high fever of 101 this morning :o(. She was miserable all day long with a constant fever that I have not been able to keep below 99.9. She also has congestion, though not as bad as Big Brother or Daddy yet, and her nose is running like a faucet, she has a cough as well. We can see in her eyes that she does not feel well at all. And my poor baby girl slept all day long today, I think she was awake maybe 4 hours total today. I felt so bad when we couldn't let her fall asleep when she wanted to for bedtime, she had to stay awake until we were in the clear to give her her Propanolol and Digoxin, poor baby kept trying to fall asleep sitting up in the middle of the floor :o(. On the good side I was able to get 1/2 a container of Pedialyte in her today, and a tiny bit of water and some milk :o). And she IS eating, she ate every meal today, even porked out on dinner like she was half starved. Hopefully she wakes up feeling better in the morning, and hopefully I can get tons of liquids in her tomorrow as well. Another plus is that she has not had SVT today :o), praying with everything I have that she doesn't have any tomorrow or the next day either! Daddy took the prayers one step further and called our Home Teachers and asked if they could come give Miss K a Priesthood blessing. They came late tonight and gave her a wonderful blessing :o), also made Daddy feel so bad that he is too sick to do this for her himself :o(.
I have made no less than 4 trips to the grocery store in 2 days. Every time I think we have everything we need to take care of everyone we find I am wrong and I am sent out once again...tonight Daddy needed Pepto Bismal badly, and we could have used another bottle of Ibuprophine for Miss K but I have had enough of the store for a bit and refused to leave the house yet again. Daddy will suffer, but he'll live I am sure and we have just enough Ibuprophine to make it through tomorrow morning so I don't feel bad.
I have been spraying Lysol on every surface for 3 days now, including any pillows and the couch every time Daddy touches them. I literally mean every surface has been sprayed multiple times. I also have had hand sanitizer sitting on the dining table all week, I use it every time I touch one of the sickies or something they have touched. I also require Daddy and Big Brother use it every time they touch anywhere on their face and after they use the restroom and, of course, after they touch Miss K and anything she has touched. I have become the sanitizer Natzi! But I refuse to get this illness, I am 32 weeks pregnant and I have a household to run, there is no way I can afford getting as sick as they have all been. It's just too bad I couldn't stop the kids from sharing their toys and germs, poor Miss K still ended up getting sick even with everything I have done :o(.
I think after all this is said and done I will need a vacation...alone. "I need", "I want", "I don't feel good", "I hurt"...all phrases I have heard constantly for 3 days now from 2 kids AND a husband. It get's tiring real fast. Not to mention the lack of sleep I have to endure through it all and no time to sit down and take care of myself for a minute. I may end up getting sick just because I'm being ran to my whits end!
12.19.2012
12.17.2012
It's been quiet with Miss K :o)
We've been having a great past few weeks! I hope I don't jinx it, *knock on wood*!
I really feel the Digoxin is working :o).
With the baby coming in just 7 weeks we decided we needed a trial run with Grandma and Grandpa to prepare them and Miss K for the 3-4 day stay at their house after the birth of the baby. This very paranoid and nervous mama left her sweet baby girl in the hands of Grandma and Grandpa for a whole night this past weekend. I admit, I ended up worrying and missing the kids a lot less than I thought I would! The time with just Daddy and I was so quiet and badly needed. But I did call Grandma just before bedtime to remind her to give Miss K her Propanolol and Digoxin and then I called again first thing in the morning to make sure she got them again. That was my main concern was the medications being forgotten, of course I also worried a bit about an SVT episode but that worry wasn't too great since she's been doing so good lately. Turns out both kids did wonderful with my parents :o). We will have another sleep over in January for a second trial run, I'm hoping to have a Pulse Ox device by then, or at least by the time the baby comes, so that I won't worry so much.
Big Brother ended up getting sick this past weekend :o(. Our first illness since early spring, I can't believe we've made it this long staying healthy and strong! But now, just a week before Christmas, Big Brother is very congested, has a runny nose and a nasty inconsistent cough. So far he has only been a bit warm, not really getting a temperature high enough to be considered a fever thank heavens! I am working as hard as I can to keep Miss K from getting his cold. But I do feel confident that as long as the cold doesn't come with a fever Miss K will do fine with it heart wise. So now we wait and see, see if I can keep her healthy by some miracle, and see if Big Brother makes it through fever free, and then of course see if Miss K can make it through fever free if she does end up getting it.
Here's to hoping I won't be back posting anything negative for a long while yet!
Praying for a quiet and enjoyable Christmas for everyone :o).
I really feel the Digoxin is working :o).
With the baby coming in just 7 weeks we decided we needed a trial run with Grandma and Grandpa to prepare them and Miss K for the 3-4 day stay at their house after the birth of the baby. This very paranoid and nervous mama left her sweet baby girl in the hands of Grandma and Grandpa for a whole night this past weekend. I admit, I ended up worrying and missing the kids a lot less than I thought I would! The time with just Daddy and I was so quiet and badly needed. But I did call Grandma just before bedtime to remind her to give Miss K her Propanolol and Digoxin and then I called again first thing in the morning to make sure she got them again. That was my main concern was the medications being forgotten, of course I also worried a bit about an SVT episode but that worry wasn't too great since she's been doing so good lately. Turns out both kids did wonderful with my parents :o). We will have another sleep over in January for a second trial run, I'm hoping to have a Pulse Ox device by then, or at least by the time the baby comes, so that I won't worry so much.
Big Brother ended up getting sick this past weekend :o(. Our first illness since early spring, I can't believe we've made it this long staying healthy and strong! But now, just a week before Christmas, Big Brother is very congested, has a runny nose and a nasty inconsistent cough. So far he has only been a bit warm, not really getting a temperature high enough to be considered a fever thank heavens! I am working as hard as I can to keep Miss K from getting his cold. But I do feel confident that as long as the cold doesn't come with a fever Miss K will do fine with it heart wise. So now we wait and see, see if I can keep her healthy by some miracle, and see if Big Brother makes it through fever free, and then of course see if Miss K can make it through fever free if she does end up getting it.
Here's to hoping I won't be back posting anything negative for a long while yet!
Praying for a quiet and enjoyable Christmas for everyone :o).
11.30.2012
Newborn Heart Defect Screen Awareness Day
I had big plans to post something new about today all day long to get the word out there but with 2 busy kids this was put on the back burner lol. So, since we're already 1/2 way through the day I'll stick to just one post.
This is a quick video about Newborn Pulse Ox screening. If you or someone you know is expecting a baby please watch and share this! It could potentially save a little one's life. Pulse Ox screening is very simple, very non-invasive, and very quick. There is no reason NOT to do this for our babies.
I don't remember if I've mentioned here that we are expecting our third baby in February. Yes, quite a shock for us! Our little family of 4 is growing to 5 in just a few short months! I have done tons of research and after having 2 babies already I know what I want and what I expect at the birth of this third precious one. One thing is certain: I WILL BE ASKING...NO, DEMANDING...THE NEWBORN NURSERY PUT A PULSE OXIMETER ON THIS NEW LITTLE ONE WITHIN 24 HOURS OF BIRTH. I don't expect to deliver another heart baby, this one should be perfectly healthy and fine like it's big brother but you absolutely can never be positively sure about this. I am terrified of taking a new baby home without knowing that the Pulse Ox test is perfect.
Please watch this video :o), save a baby's life :o).
This is a quick video about Newborn Pulse Ox screening. If you or someone you know is expecting a baby please watch and share this! It could potentially save a little one's life. Pulse Ox screening is very simple, very non-invasive, and very quick. There is no reason NOT to do this for our babies.
I don't remember if I've mentioned here that we are expecting our third baby in February. Yes, quite a shock for us! Our little family of 4 is growing to 5 in just a few short months! I have done tons of research and after having 2 babies already I know what I want and what I expect at the birth of this third precious one. One thing is certain: I WILL BE ASKING...NO, DEMANDING...THE NEWBORN NURSERY PUT A PULSE OXIMETER ON THIS NEW LITTLE ONE WITHIN 24 HOURS OF BIRTH. I don't expect to deliver another heart baby, this one should be perfectly healthy and fine like it's big brother but you absolutely can never be positively sure about this. I am terrified of taking a new baby home without knowing that the Pulse Ox test is perfect.
Please watch this video :o), save a baby's life :o).
11.20.2012
HaPpY DaNcE!!!!
Miss K had a hard weekend. She had a high fever for 3 days and was just miserable but had no other symptoms, we were clueless as to what she was fighting. And as always, the fever caused SVT...twice. We made it 2 weeks without SVT and we were so happy! And then it ended with 2 episodes in 2 days caused by a fever. I wasn't worried, didn't think I'd even count these episodes and certainly didn't plan on calling the EP Cardiologist to tell him about them. But Saturday night Miss K had a suspicious lump appear on her leg, where she had recently gotten a vaccination shot. I wasn't sure if it was her Chicken Pox Vaccine or the MMR Vaccine but seeing this made me quite sure that was the source of her fever for whatever reason. We waited and watched Miss K through Saturday night and all day Sunday. She happened to wake up Sunday morning fever free and feeling great! But the lump was still there, bright red and suspicious looking. Monday was much the same as Sunday but I decided to call her Pediatrician anyway, they got us in to see the physicians assistant early in the morning. The PA was a bit concerned about the lump and the fever but when I told her about the SVT she grew the most concerned and opted to go chat with our pediatrician about what to do. It turns out the fever and the red lump on Miss K's leg were related, it was a perfectly normal reaction to the MMR Vaccine and nothing to worry about. But the pediatrician was very concerned about the SVT episodes. He said that clearly the Digoxin was not working and that this weekend was a good trial run to let us know sooner, rather than later, that Miss K needed to be back on the Amiodarone ASAP before she caught a nasty virus. Apparently there are a few really nasty cold and flu viruses going around town and he's seen way too many cases with extremely high fevers and horrible symptoms. He was worried about Miss K dealing with actual symptoms of a virus as well as a fever and SVT on top of it all and predicted finding her hospitalized because of complications. He ordered me to call the EP Cardiologist that day and tell him about our weekend.
So I worried. And I called the EP Cardiologist as soon as we got home. I also cried and stressed. I was certain Miss K would be fine and that SVT with a fever was just her normal. Something we can't control. Period. But the pediatricians reaction had me doubting my instincts.
It took 2 days for the EP Cardiologist to get back with me. He finally called me himself thank heavens. His reaction: Miss K is fine. The Digoxin is working in his opinion, it's a great sign that we made it 2 weeks SVT free after such a long stretch of weekly SVT episodes. The fever induced SVT means nothing to him. He said it's to be expected with a PJRT child. He did not need to be reminded that while on the Amiodarone Miss K was having SVT with fevers. He feels that no matter what medication we have her on she will still have SVT with a fever and it's not something we can control at all. He did mention that putting her on the Amiodarone would help to better control the SVT but he doesn't feel it's necessary, the risks of being on it far outweigh the risks of not being on it.
I cannot even begin to describe my feelings while I spoke to this wonderful man! I instantly teared up hearing that he knew Miss K was fine. It was such a relief to be told Miss K will not be hospitalized any time soon and that the Digoxin is more than likely working just fine.
I admit...I did a happy dance...a rather embarrassing happy dance ;o). I'm glad I was all alone to have my moment of celebration so as to avoid being laughed lol :o).
Here's to a long weekend with family and feasting, worry free! I hope everyone has a wonderful Thanksgiving full of family, friends and happiness!
So I worried. And I called the EP Cardiologist as soon as we got home. I also cried and stressed. I was certain Miss K would be fine and that SVT with a fever was just her normal. Something we can't control. Period. But the pediatricians reaction had me doubting my instincts.
It took 2 days for the EP Cardiologist to get back with me. He finally called me himself thank heavens. His reaction: Miss K is fine. The Digoxin is working in his opinion, it's a great sign that we made it 2 weeks SVT free after such a long stretch of weekly SVT episodes. The fever induced SVT means nothing to him. He said it's to be expected with a PJRT child. He did not need to be reminded that while on the Amiodarone Miss K was having SVT with fevers. He feels that no matter what medication we have her on she will still have SVT with a fever and it's not something we can control at all. He did mention that putting her on the Amiodarone would help to better control the SVT but he doesn't feel it's necessary, the risks of being on it far outweigh the risks of not being on it.
I cannot even begin to describe my feelings while I spoke to this wonderful man! I instantly teared up hearing that he knew Miss K was fine. It was such a relief to be told Miss K will not be hospitalized any time soon and that the Digoxin is more than likely working just fine.
I admit...I did a happy dance...a rather embarrassing happy dance ;o). I'm glad I was all alone to have my moment of celebration so as to avoid being laughed lol :o).
Here's to a long weekend with family and feasting, worry free! I hope everyone has a wonderful Thanksgiving full of family, friends and happiness!
11.13.2012
Miss K Update
Miss K's EP Cardiologist was in the Cath Lab all day the day I called to speak with him about Miss K's more frequent SVT episodes so he never called back. I called the next morning to make sure we hadn't been forgotten and within an hour he returned my phone call.
And the verdict is...
Miss K is now taking 1.2 mL Digoxin twice daily along with her Propanolol 3.2 mL 3 times daily.
The conversation was a bit discouraging and brought a lot of questions to mind.
The EP Cardiologist is hoping the Digoxin will help make her SVT less frequent and easier to manage but he isn't guaranteeing it, he actually doesn't think it's going to do much for her but he's willing to try it as it's the easiest option to try first.
IF the Digoxin doesn't work, and we will know within a week if it's going to, he is going to schedule to have Miss K hospitalized at Primary Children's Medical Center ASAP. She will be hospitalized for observation only as they start her back on the Amiodarone at a very low dose, most likely back to the small dose she was on when we stopped giving it to her. The reason for hospitalization is to keep her on constant EKG monitoring to make sure she doesn't react to the Amiodarone any differently than she was when she was on it before. They have to make sure her heart rate stays at a steady and safe pace without any extra beats or anything dangerous.
I have cried over this for a few days. I'm trying to be hopeful the Digoxin will work, I really want it to work. But the EP Cardiologist was so sure it isn't going to work that he has discouraged me.
The thought of hospitalizing Miss K for any amount of time is terrifying and a bit depressing for me. He estimated it could take 3-5 days before she can be released...with Miss K's track record I am scared it will actually end up being 1-2 weeks or more. I mean seriously, how can I be hopeful that 3-5 days is going to be it when we were told 24 hours was all she needed a year ago and we ended up there for nearly 4 weeks?!?
The bills alone are terrifying to me. If it needs to be done it needs to happen before the end of the year so we can take advantage of our insurance deductible being maxed out, this would help immensely. But doing it before the end of the year puts us at risk of ending up staying in the hospital through the holidays, very much not something I'm not willing to risk.
Having a 3 year old son at home and being 7 months pregnant is also terrifying. I really can't imagine sitting in a hospital room for days, or weeks, with my baby while my 3 year old is being taken care of by someone besides me and while I'm trying to deal with pregnancy hormones. We have a lot of family who can help us with our son, the issue we'll be dealing with is that Big Brother is in Preschool two days a week and I am paying more than we can afford to have him there, we cannot have him skip days as they are not refundable. Whomever gets to watch him for the duration of Miss K's stay is going to need to take time off work and away from their own families to come sit with him at our home so they can take him to school and try to keep up some kind of regular routine so he won't have a flip out moment about having Mommy and Miss K gone together again.
And the most terrifying thing for me is sitting in a cramped hospital room with my wiggly, very busy, very mischiveous, 15 month old baby girl. There is no way they are going to get her to leave an IV in, and we know they will require an IV for her stay. They will not get her to stay in a bed for any amount of time other than sleeping. She is the most dramatic baby when it comes to eating and I can't imagine trying to get her to eat there in the hospital. All I can see is stress. And tears.
We can use all the prayers we can get that we can avoid the hospitalization option!!!! I have days I feel good about the Digoxin and other days I cry thinking "it's not going to work just because we're due for another trial in our lives and this is it."
On a bit of a lighter note. Daddy and I have been in search of a good, reliable Pulse Ox device to purchase. We have not had much trouble finding them but we have had trouble finding a good price that fits our budget. The ones that are most affordable are not as reliable with pediatric patients as we need it to be. It took us over a year to finally decide to break down and purchase one. We were not in a hurry before since Miss K was so young and we were not inclined to leave her with anyone for any amount of time because I was breastfeeding her and also her SVT episodes were very infrequent, averaging one about every 3 months or more. But now that she is giving us SVT troubles again, and she's old enough for us to be more prone to leaving her, and Daddy and I have not had enough date nights or time away from the kids lately, as well as the fact that baby #3 is on it's way come February and we WILL be leaving Miss K and Big Brother with family during the delivery and for nearly a week afterwards (I have c-section deliveries so the hospital stay is at least 3 days, usually 4), we are needing something to help us be more comfortable leaving Miss K with someone for more than an hour or two. Having a Pulse Ox in the diaper bag with clear instructions on how and when to use it and what to do if her heart rate is too high is likely to make Daddy and I at least a bit more comfortable with the thought of leaving Miss K with a sitter. A stethoscope is great but only when the person using it knows what Miss K's heart sounds like when in SVT and it's not a sound that's easy enough to describe. Getting Miss K to sit and be quiet for a whole minute in order to count out the beats is nearly impossible so we are not willing to just rely on a stethoscope for family and sitters watching her.
And the verdict is...
Miss K is now taking 1.2 mL Digoxin twice daily along with her Propanolol 3.2 mL 3 times daily.
The conversation was a bit discouraging and brought a lot of questions to mind.
The EP Cardiologist is hoping the Digoxin will help make her SVT less frequent and easier to manage but he isn't guaranteeing it, he actually doesn't think it's going to do much for her but he's willing to try it as it's the easiest option to try first.
IF the Digoxin doesn't work, and we will know within a week if it's going to, he is going to schedule to have Miss K hospitalized at Primary Children's Medical Center ASAP. She will be hospitalized for observation only as they start her back on the Amiodarone at a very low dose, most likely back to the small dose she was on when we stopped giving it to her. The reason for hospitalization is to keep her on constant EKG monitoring to make sure she doesn't react to the Amiodarone any differently than she was when she was on it before. They have to make sure her heart rate stays at a steady and safe pace without any extra beats or anything dangerous.
I have cried over this for a few days. I'm trying to be hopeful the Digoxin will work, I really want it to work. But the EP Cardiologist was so sure it isn't going to work that he has discouraged me.
The thought of hospitalizing Miss K for any amount of time is terrifying and a bit depressing for me. He estimated it could take 3-5 days before she can be released...with Miss K's track record I am scared it will actually end up being 1-2 weeks or more. I mean seriously, how can I be hopeful that 3-5 days is going to be it when we were told 24 hours was all she needed a year ago and we ended up there for nearly 4 weeks?!?
The bills alone are terrifying to me. If it needs to be done it needs to happen before the end of the year so we can take advantage of our insurance deductible being maxed out, this would help immensely. But doing it before the end of the year puts us at risk of ending up staying in the hospital through the holidays, very much not something I'm not willing to risk.
Having a 3 year old son at home and being 7 months pregnant is also terrifying. I really can't imagine sitting in a hospital room for days, or weeks, with my baby while my 3 year old is being taken care of by someone besides me and while I'm trying to deal with pregnancy hormones. We have a lot of family who can help us with our son, the issue we'll be dealing with is that Big Brother is in Preschool two days a week and I am paying more than we can afford to have him there, we cannot have him skip days as they are not refundable. Whomever gets to watch him for the duration of Miss K's stay is going to need to take time off work and away from their own families to come sit with him at our home so they can take him to school and try to keep up some kind of regular routine so he won't have a flip out moment about having Mommy and Miss K gone together again.
And the most terrifying thing for me is sitting in a cramped hospital room with my wiggly, very busy, very mischiveous, 15 month old baby girl. There is no way they are going to get her to leave an IV in, and we know they will require an IV for her stay. They will not get her to stay in a bed for any amount of time other than sleeping. She is the most dramatic baby when it comes to eating and I can't imagine trying to get her to eat there in the hospital. All I can see is stress. And tears.
We can use all the prayers we can get that we can avoid the hospitalization option!!!! I have days I feel good about the Digoxin and other days I cry thinking "it's not going to work just because we're due for another trial in our lives and this is it."
On a bit of a lighter note. Daddy and I have been in search of a good, reliable Pulse Ox device to purchase. We have not had much trouble finding them but we have had trouble finding a good price that fits our budget. The ones that are most affordable are not as reliable with pediatric patients as we need it to be. It took us over a year to finally decide to break down and purchase one. We were not in a hurry before since Miss K was so young and we were not inclined to leave her with anyone for any amount of time because I was breastfeeding her and also her SVT episodes were very infrequent, averaging one about every 3 months or more. But now that she is giving us SVT troubles again, and she's old enough for us to be more prone to leaving her, and Daddy and I have not had enough date nights or time away from the kids lately, as well as the fact that baby #3 is on it's way come February and we WILL be leaving Miss K and Big Brother with family during the delivery and for nearly a week afterwards (I have c-section deliveries so the hospital stay is at least 3 days, usually 4), we are needing something to help us be more comfortable leaving Miss K with someone for more than an hour or two. Having a Pulse Ox in the diaper bag with clear instructions on how and when to use it and what to do if her heart rate is too high is likely to make Daddy and I at least a bit more comfortable with the thought of leaving Miss K with a sitter. A stethoscope is great but only when the person using it knows what Miss K's heart sounds like when in SVT and it's not a sound that's easy enough to describe. Getting Miss K to sit and be quiet for a whole minute in order to count out the beats is nearly impossible so we are not willing to just rely on a stethoscope for family and sitters watching her.
11.08.2012
Miss K is 15 Months
Time sure flies...I wish we could hit pause for just a bit and keep them little a bit longer than they tend to stay little on their own :o(.
Miss K is doing well. She had her 15 month Well baby exam today with her Pediatrician. She now weighs 18 pounds and is 30 inches tall, seems they are a lot more accurate with these measurements than the Cardiologist is ;o). She is perfectly healthy and developing right on track in every way.
Her Pediatrician was concerned about the frequent SVT episodes. I have been putting off calling the Cardiologist hoping that they will stop with time but she is still having about one a week. The Pediatrician told me to call today. He's worried that the longer we let her heart go into SVT regularly the harder it is going to get to control it with medication, he's afraid her heart is going to get in the habit of SVT episodes :o(.
So I put a call into the Cardiologist as soon as we got home. I'm waiting to see what he says to the nurse, so far I've talked to her and let her know what's going on and she has yet to call me back, I will update this post as soon as I know what we're going to be doing. Hopefully we just up the Propanolol a bit more first before he suggests anything more aggressive. Stay tuned!
Miss K is doing well. She had her 15 month Well baby exam today with her Pediatrician. She now weighs 18 pounds and is 30 inches tall, seems they are a lot more accurate with these measurements than the Cardiologist is ;o). She is perfectly healthy and developing right on track in every way.
Her Pediatrician was concerned about the frequent SVT episodes. I have been putting off calling the Cardiologist hoping that they will stop with time but she is still having about one a week. The Pediatrician told me to call today. He's worried that the longer we let her heart go into SVT regularly the harder it is going to get to control it with medication, he's afraid her heart is going to get in the habit of SVT episodes :o(.
So I put a call into the Cardiologist as soon as we got home. I'm waiting to see what he says to the nurse, so far I've talked to her and let her know what's going on and she has yet to call me back, I will update this post as soon as I know what we're going to be doing. Hopefully we just up the Propanolol a bit more first before he suggests anything more aggressive. Stay tuned!
10.28.2012
Breakthrough SVT Log...
I have a feeling there's going to be a lot more SVT in the near future. Rather than post and re-post about each and every one of them I'm just going to add them here as they happen, no worries I'll date them :o), this IS a journal for me as much as an update for all of you so keeping track is very important to me.
Friday, October 26:
Miss K had another SVT episode :o(. We have not missed any Propanolol doses and she has been getting the new dose of 3.2 mL 3 times a day for a little more than a week. The SVT was, yet again, unexplained :o(. We're not sure how long she was in it before I caught it, she had been spending the afternoon/evening with Daddy while I worked my day at the boutique. Daddy doesn't know how to tell when Miss K is in SVT and he never catches it on his own. I don't know how to explain how I know she's in SVT, she doesn't show any real physical signs that are for sure "I'm in SVT" signs. She just seems off to me, a bit out of sorts. And she is normally crying for no apparent reason, just wining and moping around carrying her blanket. She also does this when she just plain doesn't feel well but somehow my "mommy instincts" can pick out whether she is in SVT or not when acting like this. When I got home I could hear Miss K crying in her room while getting a diaper change, Daddy came out with her completely baffled and told me she was refusing to eat her dinner and that her diaper was clean and dry, he didn't know what was wrong. I took her from him and just knew to check her heart. She was in SVT and she actually sat still long enough for me to count it out, it was over 200 BPM. Luckily the physical maneuver that makes her bear down worked on the first try and then she was fine, tired but fine. This is turning into a once a week occurrence lately :o(.
Sunday, November 4:
Miss K had another SVT episode IN CHURCH! And this time I was paying attention and figured something out...temper tantrums can cause SVT! She was being insistent on playing with a Crayola marker but she only wanted to play with it, not color and she kept pulling the lid off and drawing on her pretty little dress so I took it away. She tried to throw a huge tantrum and got so worked up it just threw her into SVT. I knew she was in it when she went from near tantrum screaming to painful crying :o(. I carried her out into the Mother's room and checked to make sure I was correct in my thinking she was in SVT, once confirmed I did the "bear down" physical maneuver, it took 2 tries this time :o( I hope that's not a sign that it may stop working in the future :o(. She was fine the rest of church, other than being extremely tired because of the time change, in her mind it was nap time but we still had an hour left of meetings so she really gave us a hard time. Looking back on the last SVT in church episode I realized that it was the same situation as today when she went into SVT, she was upset over having something taken away and started to throw a huge tantrum when her screaming turned to cries of pain.
Friday, November 16:
Miss K has been taking 1.2 mL Digoxin twice a day with 3.2 mL Propanolol 3 times a day for 4 days now. Her EP Cardiologist told us if there was going to be any change in the frequency and duration of her SVT episodes we would notice within 3 days or so, a week at most. I don't think I'm going to call in tonight's SVT episode though. Miss K started running a low fever last night and woke up this morning with no change, it stayed around 99 degrees Fahrenheit all morning but this afternoon it went up to just over 100 :o(. Miss K is well known for having SVT with high fevers so I am attributing tonight's episode to that. She cried "that cry" as she went into it and then she was just fussy and a bit whiny, she wasn't doing anything to cause the SVT, it just happened out of nowhere. We let her stay in it for about 15-20 minutes before making her bear down to stop the SVT. Daddy got to try it this time without my help or instruction and was very pleased he was able to get her out of the SVT without me :o). I really hope this episode was truly caused by her fever. I know she shouldn't be having any at all, fever or not, but how can we think a high fever isn't going to cause SVT with a PJRT child when everyone's heart rate is quite a bit faster than normal when they are fevering? We're still on the lookout for more episodes though, we check her constantly throughout the day. I'm happy to say we made it over 2 weeks without SVT this time and with her running a fever it just makes it more believable that the new medication "cocktail" may actually be working.
Saturday, November 17:
I'm sitting at the Boutique, where I put in occasional shifts, when my phone rings...it's Daddy calling to tell me Miss K is running a fever again, about 102 degrees Fahrenheit :o(. We have no idea why she's running a fever these past two days, why is it kids do this on the weekends when they can't see their doctor? So anyway, he then continues to tell me that she went down for nap just after 1:00pm and he went in to get her up at 4:00pm, she didn't want to get up and was trying to go back to sleep so he checked her heart to find she was in SVT :o(. He doesn't know if she went into it before, during or waking up from her nap so we have no idea how long she was in SVT before he made her bear down to break the episode :o(. This makes me nervous. I'm still sure it's the fever causing the SVT, we DID have 3 episodes in one day the last time she had a fever so 1 episode every day that she's fevering isn't much of a surprise to me. But now I'm trying to remain calm as I try to decide if I need to call the EP Cardiologist on Monday and let him know what's going on. I know he'll want to know that she's having SVT but I don't know if he'll consider these episodes something to worry about or not since she's running a high fever. I just wish we knew WHY she's running a fever, teeth are always an option but I don't think that's very likely right now as she's already gotten all 4 new molars, I think she's done with teeth for at least a few months. Here's to praying I'm not back on here any time soon to report more :o(. Keep praying with us that we can keep her out of the hospital!
Thursday, November 22:
Yes, Thanksgiving day :o(. Actually it was in the evening. We were at my parents for the holiday. Miss K decided to throw a temper tantrum for her Grandma and it caused SVT. It was good timing in a sense, but also bad seeing as it's been less than 5 days since her last episode. So Grandma got to put her ear to Miss K's chest and hear what SVT sounds like in her, the first time in over a year since Grandma or Grandpa has heard her heart beating too fast. I also got to show Grandma and Grandpa how to help Miss K bear down and break the SVT episode. The next time I speak to the EP Cardiologist I'll ask him what he thinks about her temper tantrums causing SVT. It's not all the time, just certain tantrums she throws when she's extremely ticked off about something, this doesn't happen very often, actually so far it's only happened in church and now at Grandma's lol.
Tuesday, November 27:
Another one :o(. And we have no idea why. We also have no idea when she went into it. I have had a very busy and distracted day, one of those days where the kids do whatever they want and make a huge mess of the house and I don't even notice, as long as they are playing and happy and not bothering me or hurting anything. So sometime this morning during the chaos of the kids happily terrorizing the house and me being distracted with my work Miss K went into SVT. Daddy came home for lunch around 12:30, he wasn't home long when Miss K started wining and begging to be held, but still wining even while being held. We thought she was just hungry since she hadn't eaten much for breakfast and it had been 3 hours since then but when I'd ask her if she wanted to eat she'd just wine some more instead of signing "eat" like she usually does. I put my ear to her chest and heard the quick beats of SVT :o(. She came out of it instantly with the "bear down" physical maneuver. I'm concerned since it's only been 5 days since her last episode, they seem to be happening more and more frequently. Her EP cardiologist wasn't concerned the last time we spoke but I feel he just might be concerned if I called again...I'm not sure if we should wait a bit longer or if we should see if she just needs a dosing adjustment. I'll keep everyone updated on what we end up deciding. Until then hopefully I won't be back on this thread posting another episode anytime soon :o(.
Saturday, December 22:
We very nearly made it 1 month episode free! But this illness Miss K has ruined it for us. She did so well for the first 3 days but suddenly couldn't handle it any longer. This morning she had another SVT episode, her fever is pretty low, low enough to be nearly non-existent. Yesterday she started pulling on her ears and crying, I hoped it was not an ear infection, I was way too sick to really pay much attention to her behavior through the day and didn't get her in to see the Pediatrician :o(. This morning with the SVT episode and the tugging on her ears combined I decided she needed to be seen, ear infections tend to cause SVT with her as easily as a fever does. So as of right now Daddy has Miss K over at the After Hours Clinic getting her checked out. I hate that I am too sick to take her myself. I had to write a note listing everything Daddy needs to mention to the Doctor while there so that he doesn't forget anything important and so that she can be treated correctly for her situation. I only hope it all goes well! One of my biggest worries is that her heart rate is most likely a lot higher than they are used to seeing in a child her age so I told Daddy over and over as he went out the door that he needed to tell them that as long as her heart rate is below 200 BPM she is fine and does not need the Emergency Room, I hope they listen to him! I will update on what the Doctor says when Daddy and Miss K get back...
*Update: Daddy and Miss K came back with a prescription for Amoxicillin for Miss K. Her ears were quite a bit red, not enough for them to normally treat immediately but with Christmas in a few days they are treating her so that we don't end up in the Emergency Room with her in lots of ear pain. The doctor also told Daddy that Miss K is quite dehydrated :o(. We were doing well getting her to drink but, having this flu myself I know, water doesn't taste all that great so she is refusing it. I got pedialyte but she only drank half the container and got tired of that taste, we offered her gatorade and she didn't like it :o(. So after going to the doctor and finding she is indeed dehydrated we broke out the apple juice, we're watering it down so she's getting at least some water in her. Knowing she's dehydrated enough for a doctor to make note of it lets us know that's why she had SVT this morning, dehydration can cause it as well. So now our drug cocktail is a very long list daily for the next 10 days! Propanolol 3x a day, Digoxin 2x a day, Tamaflu 2x a day, Amoxicillin 2x a day, and Tylenolol and Ibuprophine as needed as well as Little Remedies Honey Cough Elixer as needed. Poor kid is stuck taking medications all day long! Though after a long afternoon nap and having started the Amoxicillin as soon as she got home she seems to be on the mend already :o).
Friday, October 26:
Miss K had another SVT episode :o(. We have not missed any Propanolol doses and she has been getting the new dose of 3.2 mL 3 times a day for a little more than a week. The SVT was, yet again, unexplained :o(. We're not sure how long she was in it before I caught it, she had been spending the afternoon/evening with Daddy while I worked my day at the boutique. Daddy doesn't know how to tell when Miss K is in SVT and he never catches it on his own. I don't know how to explain how I know she's in SVT, she doesn't show any real physical signs that are for sure "I'm in SVT" signs. She just seems off to me, a bit out of sorts. And she is normally crying for no apparent reason, just wining and moping around carrying her blanket. She also does this when she just plain doesn't feel well but somehow my "mommy instincts" can pick out whether she is in SVT or not when acting like this. When I got home I could hear Miss K crying in her room while getting a diaper change, Daddy came out with her completely baffled and told me she was refusing to eat her dinner and that her diaper was clean and dry, he didn't know what was wrong. I took her from him and just knew to check her heart. She was in SVT and she actually sat still long enough for me to count it out, it was over 200 BPM. Luckily the physical maneuver that makes her bear down worked on the first try and then she was fine, tired but fine. This is turning into a once a week occurrence lately :o(.
Sunday, November 4:
Miss K had another SVT episode IN CHURCH! And this time I was paying attention and figured something out...temper tantrums can cause SVT! She was being insistent on playing with a Crayola marker but she only wanted to play with it, not color and she kept pulling the lid off and drawing on her pretty little dress so I took it away. She tried to throw a huge tantrum and got so worked up it just threw her into SVT. I knew she was in it when she went from near tantrum screaming to painful crying :o(. I carried her out into the Mother's room and checked to make sure I was correct in my thinking she was in SVT, once confirmed I did the "bear down" physical maneuver, it took 2 tries this time :o( I hope that's not a sign that it may stop working in the future :o(. She was fine the rest of church, other than being extremely tired because of the time change, in her mind it was nap time but we still had an hour left of meetings so she really gave us a hard time. Looking back on the last SVT in church episode I realized that it was the same situation as today when she went into SVT, she was upset over having something taken away and started to throw a huge tantrum when her screaming turned to cries of pain.
Friday, November 16:
Miss K has been taking 1.2 mL Digoxin twice a day with 3.2 mL Propanolol 3 times a day for 4 days now. Her EP Cardiologist told us if there was going to be any change in the frequency and duration of her SVT episodes we would notice within 3 days or so, a week at most. I don't think I'm going to call in tonight's SVT episode though. Miss K started running a low fever last night and woke up this morning with no change, it stayed around 99 degrees Fahrenheit all morning but this afternoon it went up to just over 100 :o(. Miss K is well known for having SVT with high fevers so I am attributing tonight's episode to that. She cried "that cry" as she went into it and then she was just fussy and a bit whiny, she wasn't doing anything to cause the SVT, it just happened out of nowhere. We let her stay in it for about 15-20 minutes before making her bear down to stop the SVT. Daddy got to try it this time without my help or instruction and was very pleased he was able to get her out of the SVT without me :o). I really hope this episode was truly caused by her fever. I know she shouldn't be having any at all, fever or not, but how can we think a high fever isn't going to cause SVT with a PJRT child when everyone's heart rate is quite a bit faster than normal when they are fevering? We're still on the lookout for more episodes though, we check her constantly throughout the day. I'm happy to say we made it over 2 weeks without SVT this time and with her running a fever it just makes it more believable that the new medication "cocktail" may actually be working.
Saturday, November 17:
I'm sitting at the Boutique, where I put in occasional shifts, when my phone rings...it's Daddy calling to tell me Miss K is running a fever again, about 102 degrees Fahrenheit :o(. We have no idea why she's running a fever these past two days, why is it kids do this on the weekends when they can't see their doctor? So anyway, he then continues to tell me that she went down for nap just after 1:00pm and he went in to get her up at 4:00pm, she didn't want to get up and was trying to go back to sleep so he checked her heart to find she was in SVT :o(. He doesn't know if she went into it before, during or waking up from her nap so we have no idea how long she was in SVT before he made her bear down to break the episode :o(. This makes me nervous. I'm still sure it's the fever causing the SVT, we DID have 3 episodes in one day the last time she had a fever so 1 episode every day that she's fevering isn't much of a surprise to me. But now I'm trying to remain calm as I try to decide if I need to call the EP Cardiologist on Monday and let him know what's going on. I know he'll want to know that she's having SVT but I don't know if he'll consider these episodes something to worry about or not since she's running a high fever. I just wish we knew WHY she's running a fever, teeth are always an option but I don't think that's very likely right now as she's already gotten all 4 new molars, I think she's done with teeth for at least a few months. Here's to praying I'm not back on here any time soon to report more :o(. Keep praying with us that we can keep her out of the hospital!
Thursday, November 22:
Yes, Thanksgiving day :o(. Actually it was in the evening. We were at my parents for the holiday. Miss K decided to throw a temper tantrum for her Grandma and it caused SVT. It was good timing in a sense, but also bad seeing as it's been less than 5 days since her last episode. So Grandma got to put her ear to Miss K's chest and hear what SVT sounds like in her, the first time in over a year since Grandma or Grandpa has heard her heart beating too fast. I also got to show Grandma and Grandpa how to help Miss K bear down and break the SVT episode. The next time I speak to the EP Cardiologist I'll ask him what he thinks about her temper tantrums causing SVT. It's not all the time, just certain tantrums she throws when she's extremely ticked off about something, this doesn't happen very often, actually so far it's only happened in church and now at Grandma's lol.
Tuesday, November 27:
Another one :o(. And we have no idea why. We also have no idea when she went into it. I have had a very busy and distracted day, one of those days where the kids do whatever they want and make a huge mess of the house and I don't even notice, as long as they are playing and happy and not bothering me or hurting anything. So sometime this morning during the chaos of the kids happily terrorizing the house and me being distracted with my work Miss K went into SVT. Daddy came home for lunch around 12:30, he wasn't home long when Miss K started wining and begging to be held, but still wining even while being held. We thought she was just hungry since she hadn't eaten much for breakfast and it had been 3 hours since then but when I'd ask her if she wanted to eat she'd just wine some more instead of signing "eat" like she usually does. I put my ear to her chest and heard the quick beats of SVT :o(. She came out of it instantly with the "bear down" physical maneuver. I'm concerned since it's only been 5 days since her last episode, they seem to be happening more and more frequently. Her EP cardiologist wasn't concerned the last time we spoke but I feel he just might be concerned if I called again...I'm not sure if we should wait a bit longer or if we should see if she just needs a dosing adjustment. I'll keep everyone updated on what we end up deciding. Until then hopefully I won't be back on this thread posting another episode anytime soon :o(.
Saturday, December 22:
We very nearly made it 1 month episode free! But this illness Miss K has ruined it for us. She did so well for the first 3 days but suddenly couldn't handle it any longer. This morning she had another SVT episode, her fever is pretty low, low enough to be nearly non-existent. Yesterday she started pulling on her ears and crying, I hoped it was not an ear infection, I was way too sick to really pay much attention to her behavior through the day and didn't get her in to see the Pediatrician :o(. This morning with the SVT episode and the tugging on her ears combined I decided she needed to be seen, ear infections tend to cause SVT with her as easily as a fever does. So as of right now Daddy has Miss K over at the After Hours Clinic getting her checked out. I hate that I am too sick to take her myself. I had to write a note listing everything Daddy needs to mention to the Doctor while there so that he doesn't forget anything important and so that she can be treated correctly for her situation. I only hope it all goes well! One of my biggest worries is that her heart rate is most likely a lot higher than they are used to seeing in a child her age so I told Daddy over and over as he went out the door that he needed to tell them that as long as her heart rate is below 200 BPM she is fine and does not need the Emergency Room, I hope they listen to him! I will update on what the Doctor says when Daddy and Miss K get back...
*Update: Daddy and Miss K came back with a prescription for Amoxicillin for Miss K. Her ears were quite a bit red, not enough for them to normally treat immediately but with Christmas in a few days they are treating her so that we don't end up in the Emergency Room with her in lots of ear pain. The doctor also told Daddy that Miss K is quite dehydrated :o(. We were doing well getting her to drink but, having this flu myself I know, water doesn't taste all that great so she is refusing it. I got pedialyte but she only drank half the container and got tired of that taste, we offered her gatorade and she didn't like it :o(. So after going to the doctor and finding she is indeed dehydrated we broke out the apple juice, we're watering it down so she's getting at least some water in her. Knowing she's dehydrated enough for a doctor to make note of it lets us know that's why she had SVT this morning, dehydration can cause it as well. So now our drug cocktail is a very long list daily for the next 10 days! Propanolol 3x a day, Digoxin 2x a day, Tamaflu 2x a day, Amoxicillin 2x a day, and Tylenolol and Ibuprophine as needed as well as Little Remedies Honey Cough Elixer as needed. Poor kid is stuck taking medications all day long! Though after a long afternoon nap and having started the Amoxicillin as soon as she got home she seems to be on the mend already :o).
10.23.2012
Starting to think...
the Amiodarone was doing a bit more good than bad for Miss K :o(.
We had yet another unexplained SVT episode last night. It's always terrifying to pick Miss K up and be able to feel her heart practically beating out of her chest, I really doubt I'll ever get over the terrified Mom part of this!
We waited it out hoping that maybe, just maybe this once she might come out of it on her own but we didn't get any such luck :o(. Her EP Cardiologist still does not want us letting her stay in it for more than 10-15 minutes at a time before breaking it using a Physical Maneuver. I dreaded using the Ice last night so I tried blowing in her face, then hanging her upside down, when neither of these worked I told Daddy to get the bag of peas out. But while Daddy was digging in the freezer I remembered another Maneuver the nurses had taught us, one I've never tried before because of Miss K's herniated umbilical, since that has healed I just forgot about this one. This maneuver forces the person to "bear down", like they're trying to have a bowel movement or, in the case of a pregnant woman, like they're pushing a baby out during labor and delivery. You gently tuck baby's knees in and then gently roll them up to their chest pushing gently, but firmly into their body. Miss K went red in the face and cried out and then I released her, waited a second and listened to her heart and she was just fine! I hope this one works the next time as well!
I'm getting nervous, Miss K is starting to have her breakthrough SVT more and more often and it's getting harder and harder to break :o(. Hopefully we can stick to the Propanolol. And hopefully we can make it 6 months before going back to the EP Cardiologist. After last night I'm not setting my hopes too high though, we may end up scheduling an appointment within the next month or so if she keeps having more and more episodes. And there is a possibility the EP Cardiologist might put her back on Amiodarone or he may suggest trying Flecainide, like we talked about a few months back.
We could sure use all the prayers we can get that Miss K will get out of this little "rut" and get back to being SVT free again, without help from more medications.
We had yet another unexplained SVT episode last night. It's always terrifying to pick Miss K up and be able to feel her heart practically beating out of her chest, I really doubt I'll ever get over the terrified Mom part of this!
We waited it out hoping that maybe, just maybe this once she might come out of it on her own but we didn't get any such luck :o(. Her EP Cardiologist still does not want us letting her stay in it for more than 10-15 minutes at a time before breaking it using a Physical Maneuver. I dreaded using the Ice last night so I tried blowing in her face, then hanging her upside down, when neither of these worked I told Daddy to get the bag of peas out. But while Daddy was digging in the freezer I remembered another Maneuver the nurses had taught us, one I've never tried before because of Miss K's herniated umbilical, since that has healed I just forgot about this one. This maneuver forces the person to "bear down", like they're trying to have a bowel movement or, in the case of a pregnant woman, like they're pushing a baby out during labor and delivery. You gently tuck baby's knees in and then gently roll them up to their chest pushing gently, but firmly into their body. Miss K went red in the face and cried out and then I released her, waited a second and listened to her heart and she was just fine! I hope this one works the next time as well!
I'm getting nervous, Miss K is starting to have her breakthrough SVT more and more often and it's getting harder and harder to break :o(. Hopefully we can stick to the Propanolol. And hopefully we can make it 6 months before going back to the EP Cardiologist. After last night I'm not setting my hopes too high though, we may end up scheduling an appointment within the next month or so if she keeps having more and more episodes. And there is a possibility the EP Cardiologist might put her back on Amiodarone or he may suggest trying Flecainide, like we talked about a few months back.
We could sure use all the prayers we can get that Miss K will get out of this little "rut" and get back to being SVT free again, without help from more medications.
10.16.2012
Miss K is 14 Months...
We had Miss K's 14 month Cardiology check up today. It went great!
Her EP Cardiologist was concerned about her latest episodes. Knowing Miss K was experiencing high fevers and missed 2 consecutive doses of Propanolol at the time she had 3 SVT episodes in one day made him feel a bit better, it's always good when we have a reasonable explanation as to WHY she was in SVT. But the other two breakthrough SVT episodes she experienced, the one about a month ago and then Sunday's "fun" experience concerned him a bit. He also isn't happy with the fact that nothing except the ice treatment is breaking the SVT, and that she has not ever converted back to normal rhythm on her own. His first statement was "I don't want to put her back on the Amiodarone", to which I of course replied "NO! We don't even want to think about that." Upon discussion we decided Miss K really is just showing us that the Amiodarone is officially out of her system (click here)and that she has outgrown the dose of Propanolol she is currently on. She has gained 2 pounds since the last dose adjustment so that makes perfect sense to all of us.
Miss K is now taking 3.2 ML Propanolol 3 times a day (up from 2.8 ML 3 times daily). So much for hoping to get her down to twice a day instead :o(. But the good news is the EP Cardiologist does not wish to see her again for 6 months, the longest stretch we have ever taken between visits! This is a good sign :o), not to mention good for our budget lol. Any concerns we may have in the next 6 months, or any new breakthrough episodes we feel need to be addressed can and will be done over the phone with him, as well as any dose adjustments.
My favorite part about this visit...the EP Cardiologists reaction when he first walked into the exam room :o). Miss K was standing in the middle of the room with some toys and his eyes got big and a bit teary and he said "Oh my, is this really (Miss K)? She has grown up so much! She is getting big way too fast. How old is she now?" I told him she's 14 months, he replied "No way! I just want to keep her little, I keep thinking of her as 9 or 10 months old, is she walking?!" He was amazed when I told him she is indeed walking...and talking...and growing up way too fast. He kept repeating that she was growing and changing way too fast for him and how sad it is that we can't just keep them tiny forever, he kept reminiscing about his first visits with her and how tiny and adorable she was, and of course he never failed to mention how adorable she still is ;o). It's wonderful to have a Doctor who cares this much about his patients.
So much for our plans to take Miss K off the Propanolol in 6 months or so...Today the Cardiologist made it sound as though she may be on it for at least another year :o(. This PJRT is really kicking Miss K's behind, They call it "persistent or Permanent" with good reason.
Her EP Cardiologist was concerned about her latest episodes. Knowing Miss K was experiencing high fevers and missed 2 consecutive doses of Propanolol at the time she had 3 SVT episodes in one day made him feel a bit better, it's always good when we have a reasonable explanation as to WHY she was in SVT. But the other two breakthrough SVT episodes she experienced, the one about a month ago and then Sunday's "fun" experience concerned him a bit. He also isn't happy with the fact that nothing except the ice treatment is breaking the SVT, and that she has not ever converted back to normal rhythm on her own. His first statement was "I don't want to put her back on the Amiodarone", to which I of course replied "NO! We don't even want to think about that." Upon discussion we decided Miss K really is just showing us that the Amiodarone is officially out of her system (click here)and that she has outgrown the dose of Propanolol she is currently on. She has gained 2 pounds since the last dose adjustment so that makes perfect sense to all of us.
Miss K is now taking 3.2 ML Propanolol 3 times a day (up from 2.8 ML 3 times daily). So much for hoping to get her down to twice a day instead :o(. But the good news is the EP Cardiologist does not wish to see her again for 6 months, the longest stretch we have ever taken between visits! This is a good sign :o), not to mention good for our budget lol. Any concerns we may have in the next 6 months, or any new breakthrough episodes we feel need to be addressed can and will be done over the phone with him, as well as any dose adjustments.
My favorite part about this visit...the EP Cardiologists reaction when he first walked into the exam room :o). Miss K was standing in the middle of the room with some toys and his eyes got big and a bit teary and he said "Oh my, is this really (Miss K)? She has grown up so much! She is getting big way too fast. How old is she now?" I told him she's 14 months, he replied "No way! I just want to keep her little, I keep thinking of her as 9 or 10 months old, is she walking?!" He was amazed when I told him she is indeed walking...and talking...and growing up way too fast. He kept repeating that she was growing and changing way too fast for him and how sad it is that we can't just keep them tiny forever, he kept reminiscing about his first visits with her and how tiny and adorable she was, and of course he never failed to mention how adorable she still is ;o). It's wonderful to have a Doctor who cares this much about his patients.
So much for our plans to take Miss K off the Propanolol in 6 months or so...Today the Cardiologist made it sound as though she may be on it for at least another year :o(. This PJRT is really kicking Miss K's behind, They call it "persistent or Permanent" with good reason.
10.15.2012
Breakthrough SVT...
...in Church! Yesterday was not a very good day for us.
It's no fun dealing with SVT away from home but dealing with it away from home and in church is even less fun! We weren't even in our own church ward (at home), we were visiting family for a baby blessing therefore attending church in Daddy's sisters ward, 2 hours from home.
The episode started about 10 minutes into the meeting, we have no idea what set it off all we know is when it started because she started screaming frantically for no apparent reason and I had to take her out into the hallway where she was pretty much inconsolable. We decided to wait it out and see if she could convert on her own, seeing as we didn't have any ice bags to treat her (See Physical Maneuvers) and Daddy did try to blow in her face and then tried tipping her upside down out in the hall during the meeting and neither of these methods worked. She was in SVT through the whole hour long meeting and not liking it, all her vitals stayed perfect but she cried and cried from pain :o(.
When the meeting was over we all headed over to Daddy's sisters house for a luncheon. Daddy and I gave Miss K her afternoon dose of Propanolol in hopes that it might help break the SVT. We waited 15 minutes, as long as we dared, but she was still in SVT. So I broke down and asked my sister in law for a frozen bag of peas. Daddy and I took Miss K into a quiet room away from everyone and sat down to do the ice treatment. Miss K did pretty OK with it this time, it's so tough doing this to a baby that's old enough to get her feelings hurt over us doing something so mean :o(, she cries huge crocodile tears and is hard to calm afterwards :o(. But it did break the SVT and she was great the rest of the afternoon.
I'm so glad she sees her EP Cardiologist tomorrow! I have a huge feeling these past episodes have been a sign that the Amiodarone is truly out of her system now (click here), not a bad thing at all just that her body is now in a place where it needs to get used to working with just the Propanolol. I think we may end up adjusting her Propanolol dose tomorrow to accommodate for the lack of Amiodarone as well as a bit of weight gain since her last dose adjustment.
I'll update again tomorrow! Keep us in your prayers, we're hoping her EP Cardiologist doesn't think she needs to be on something new, or worse, back to the Amiodarone.
It's no fun dealing with SVT away from home but dealing with it away from home and in church is even less fun! We weren't even in our own church ward (at home), we were visiting family for a baby blessing therefore attending church in Daddy's sisters ward, 2 hours from home.
The episode started about 10 minutes into the meeting, we have no idea what set it off all we know is when it started because she started screaming frantically for no apparent reason and I had to take her out into the hallway where she was pretty much inconsolable. We decided to wait it out and see if she could convert on her own, seeing as we didn't have any ice bags to treat her (See Physical Maneuvers) and Daddy did try to blow in her face and then tried tipping her upside down out in the hall during the meeting and neither of these methods worked. She was in SVT through the whole hour long meeting and not liking it, all her vitals stayed perfect but she cried and cried from pain :o(.
When the meeting was over we all headed over to Daddy's sisters house for a luncheon. Daddy and I gave Miss K her afternoon dose of Propanolol in hopes that it might help break the SVT. We waited 15 minutes, as long as we dared, but she was still in SVT. So I broke down and asked my sister in law for a frozen bag of peas. Daddy and I took Miss K into a quiet room away from everyone and sat down to do the ice treatment. Miss K did pretty OK with it this time, it's so tough doing this to a baby that's old enough to get her feelings hurt over us doing something so mean :o(, she cries huge crocodile tears and is hard to calm afterwards :o(. But it did break the SVT and she was great the rest of the afternoon.
I'm so glad she sees her EP Cardiologist tomorrow! I have a huge feeling these past episodes have been a sign that the Amiodarone is truly out of her system now (click here), not a bad thing at all just that her body is now in a place where it needs to get used to working with just the Propanolol. I think we may end up adjusting her Propanolol dose tomorrow to accommodate for the lack of Amiodarone as well as a bit of weight gain since her last dose adjustment.
I'll update again tomorrow! Keep us in your prayers, we're hoping her EP Cardiologist doesn't think she needs to be on something new, or worse, back to the Amiodarone.
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