We thought we made it, we thought we might get to say "No SVT episodes since January" come her next Cardiology appointment, we were so hopeful...
Last night was a huge disappointment for us. At bedtime I gave Miss K her Propanolol and for some strange reason she panicked trying to swallow, this is not something new to us. When Miss K was a tiny baby she would panic while swallowing it every time we gave it to her, and every time she'd do this it would cause her to go into SVT. For the last 5 months she has gotten used to it and even when she has panicked it hasn't caused SVT at all. Last night was rough, I don't know what happened but when I gave her the Propanolol she really panicked, and I mean REALLY, she stopped breathing for at least 30 seconds (a lot longer than she ever has before) and gasped and choked on the Propanolol. We got her calmed down, she was quite happy through it all strangely enough, and finished giving it to her she took the second half of it like a champ. I think she was just so happy when I gave her the first half that she was too distracted and didn't know what was going on until it hit her throat. FYI: if you've never tasted Propanolol you should know that it tastes like very strong cough medicine, it hits your throat like a ton of bricks, my best explanation is that when it hits your throat it's a lot like your very first shot of Whiskey (yes I have had Whiskey, don't judge, it was 100% medicinal), it makes you choke and gag like crazy, it can even take your breath away. About 10 minutes later I had her Daddy listen to her heart, I just felt like something wasn't right and you can guarantee when I feel this way and I know I'm right I will refuse to be the first to listen to her because it scares me to death. Her Daddy handed me the stethoscope and said "It's beating WAY fast" so I had to listen as well much to my dismay. Her heart was beating faster than I've heard it beat since her first episode in January, when I timed it I lost track multiple times and had to start over, in the end I estimated that it was beating in the 230 range or higher. Of course it scared me, it scared me to death, I really don't think I'll EVER get over that. Miss K was still happy and playing, she was actually full of giggles and smiles and just all out being a real goofball so you wouldn't have known anything was wrong without listening to her heart. The first Physical Maneuver I tried was to tip her upside down, the first try was for 5 seconds...No luck. Second try was for 10 seconds...Still no luck. One more try for 15 seconds...And again no luck. I tried to make her bear down by putting her knees to her chest and pushing hard...No luck :o(. Then I panicked more, I thought for sure we were going to end up in the hospital with a happy, seemingly healthy, baby getting an IV and Adenosine. On a whim I tried blowing in her face, since this did not work the last 2 times she was in SVT I wasn't confident it would work this time and was about ready to just skip it and move on to an ice bag...Amazingly blowing in Miss K's face worked like a charm, as soon as she got her breath back she was out of SVT and ready to go to bed. Needless to say we were quite relieved, but also quite stressed. We both spent the night listening for her to cry and checking in on her to make sure she was breathing and her heart was beating normal.
Her next Cardiology appointment is next Tuesday, she made it 3 months SVT free just like the last stretch, she got our hopes all up, I can't understand why just the week before her appointment she had to have an episode. I don't know what her Cardiologist is going to say about it, at least this time we know something put her in it and we know what that something was but I don't know if he'll see it as OK or if he'll really dislike it.
We were hoping and praying to get her off her Amiodarone SOON, I even was (and am still) hoping he might start weaning her off of it at this next appointment. My goal is still to get her Amiodarone free before or on her birthday. She has been on the same dose of Amiodarone (6 ML once daily) since she was 6 weeks old, she has gained over 10 pounds since then and at her 4 month appointment her Cardiologist mentioned that she was finally weighing what she should weigh for her dose (at 6 weeks old they had her on a dose WAY higher than recommended for her weight). So it's obvious that she's been taking less than what is OK for her current weight for almost 4 months now. That to me was a sign that we were weaning her slowly as it is and that she was doing great, the last SVT episode didn't cause her Cardiologist to up her Amiodarone dose, he upped the Propanolol instead and she's done wonderfully with it.
My hopes now are that her Cardiologist will start thinking about weaning anyway, that her weight to dose ratio will show that she's taking WAY less Amiodarone than she can and that it will show that she's been slowly weaning off of it just by not needing a higher dose with weight gain. I really don't think he'll up the dose at this upcoming appointment, but I'm not so sure it's likely he'll take her off of it like I hoped.
Maybe she'll be off the Amiodarone by her birthday....maybe.
4.10.2012
4.05.2012
Eye Doctor...
Monday we went in for another eye appointment, this time with a different Ophthalmologist. I felt we needed to see someone else since I wasn't satisfied with the first Ophthalmologist's opinion. I liked the first Doctor, he was very nice and talked and flirted with Miss K and made us feel comfortable but I didn't feel he knew enough about Miss K's situation. He also felt that I was there on my own fears and that I was overreacting about Miss K being on Amiodarone, even after I told him that Miss K's Cardiologist had sent us in. I felt like his assessment was very short and more geared towards making me feel better instead of really checking for any possible signs that the Amiodarone may be affecting her eyes (see Side Effects). When we left his office I decided to keep the appointment that we had previously made with another Ophthalmologist (when I had called to make the appointment they couldn't get her in for 2 months and her Cardiologist and I wished to get her in sooner, thus the reason we saw someone else).
The Ophthalmologist we saw this time was GREAT. Turns out he knew the first Doctor we saw and he was kind of surprised I was getting a second opinion from him but after I explained that I did like the Doctor but I didn't think he really knew enough about the situation then he understood and was more than happy to do a second assessment. He was great with Miss K and very fun to talk to. He did a little more in depth assessment of Miss K's eyes and gave her a clean bill of eye health. He was so much more understanding about our fears, he works in a Children's Hospital and sees the worst of the worst so he's a lot more careful about what he's looking for, he knows the absolute bad that can happen. He also knows Miss K's Cardiologist so he knew I was there on "Doctor's orders" not my own fears. He has requested we bring Miss K back in 3 months if she's still on the Amiodarone so he can keep a close eye on her, though he's not really concerned about Amiodarone side effects in her eyes, he says it's VERY rare in infants and small children especially if the child's family has no eye disease in the family, but like I said he's seen the worst of the worst so he's more than happy to watch her closely.
I'm so relieved to hear that her eyes are great, the Ophthalmologist was actually quite impressed (and I think excited) to see her perfect eye development, that makes a Mom fell great :o).
The Ophthalmologist we saw this time was GREAT. Turns out he knew the first Doctor we saw and he was kind of surprised I was getting a second opinion from him but after I explained that I did like the Doctor but I didn't think he really knew enough about the situation then he understood and was more than happy to do a second assessment. He was great with Miss K and very fun to talk to. He did a little more in depth assessment of Miss K's eyes and gave her a clean bill of eye health. He was so much more understanding about our fears, he works in a Children's Hospital and sees the worst of the worst so he's a lot more careful about what he's looking for, he knows the absolute bad that can happen. He also knows Miss K's Cardiologist so he knew I was there on "Doctor's orders" not my own fears. He has requested we bring Miss K back in 3 months if she's still on the Amiodarone so he can keep a close eye on her, though he's not really concerned about Amiodarone side effects in her eyes, he says it's VERY rare in infants and small children especially if the child's family has no eye disease in the family, but like I said he's seen the worst of the worst so he's more than happy to watch her closely.
I'm so relieved to hear that her eyes are great, the Ophthalmologist was actually quite impressed (and I think excited) to see her perfect eye development, that makes a Mom fell great :o).
3.29.2012
Any Thoughts? Advice? Suggestions?
I'm not sure if this is heart related or not so I thought I'd throw it out there and see if anyone else has noticed the same thing with their heart babies. Miss K is well known for holding her breath a lot, not when crying or any time she's upset and not to the point of passing out (I know a lot of healthy children who do this and know it's quite common), she just does it while playing or jabbering most often when blowing raspberries or spitting at us she'll just keep blowing and blowing to the point that we would normally need to take a breath and start over again, we've counted and she usually doesn't stop to take a breath for over 15 seconds. It doesn't seem to bother her in any way. She is also known for doing it while breastfeeding, it's like she forgets to take a breath or forgets what she's doing and she'll suddenly start choking and gasping for air, this is something that was at it's worst when she was just a few months old now that she's 7 months she's been doing it less and it's not as dramatic or traumatizing but still worrisome for me.
About a week ago I went to PCMC to refill Miss K's Amiodarone and we found that she only had a 10 day amount left on her prescription allowance but she had about 28 days before her next Cardiology appointment, it was a simple, and commonly made, miscalculation on the Cardiologits part when he first prescribed it back in September, we should have been able to get 30 day refills each time we went in until at least the end of April but he was short just a month. The pharmacy sent him a fax so he could prescribe it again but it was going to take a few days for him to get the fax and send in the prescription order and then the pharmacy needs 24 hours to mix the Amiodarone. I wasn't happy to hear this since we are 40 minutes away from PCMC and they are the closest pharmacy that is capable of mixing compound medications, I had made a special trip to fill it and I wasn't looking forward to making the trip again in a mere 10 days. I called Miss K's Cardiologist on my way home and asked what he thought, if maybe since he might be taking her off the Amiodarone at her next appointment we could just not refill it when it ran out and see how she does until the appointment date, I was kind of surprised to hear him tell me "no, she needs to stay on the Amiodarone until I see her". So we planned to go back in 10 days to refill again for a 30 day amount. Luckily we are a little ahead of ourselves on refill time with both the Amiodarone and the Propanolol, so instead of us having just 10 days or so before needing to go back we ended up with 18 days worth of Amiodarone left, so now I'm stuck with a tough decision. Miss K now has 9 days left of Amiodarone, her next Cardiology appointment is in 20 days, that leaves us with 11 days. The Amiodarone is kind of expensive to fill, especially on our already stretched budget, I really don't want to pay for a 30 day refill with only 11 days before her Cardiology appointment and have him take her off of it thus wasting that expensive stuff, but there's still the chance he may keep her on it for another few months. I guess I'm asking for suggestions or advice...I can see if the pharmacy will just give us the amount needed to make it to her Cardiology appointment thus saving us a little money and then go back for another refill on appointment day if needed or I can just get the full refill in 9 days and if the Cardiologist takes her off of it keep what's left in case she doesn't do well without it and we need to put her back on it. It wouldn't be such a tough decision for me if: A) the Amiodarone wasn't so expensive and B) the pharmacy wasn't so far away with a 24 hour notice requirement for compound refills.
About a week ago I went to PCMC to refill Miss K's Amiodarone and we found that she only had a 10 day amount left on her prescription allowance but she had about 28 days before her next Cardiology appointment, it was a simple, and commonly made, miscalculation on the Cardiologits part when he first prescribed it back in September, we should have been able to get 30 day refills each time we went in until at least the end of April but he was short just a month. The pharmacy sent him a fax so he could prescribe it again but it was going to take a few days for him to get the fax and send in the prescription order and then the pharmacy needs 24 hours to mix the Amiodarone. I wasn't happy to hear this since we are 40 minutes away from PCMC and they are the closest pharmacy that is capable of mixing compound medications, I had made a special trip to fill it and I wasn't looking forward to making the trip again in a mere 10 days. I called Miss K's Cardiologist on my way home and asked what he thought, if maybe since he might be taking her off the Amiodarone at her next appointment we could just not refill it when it ran out and see how she does until the appointment date, I was kind of surprised to hear him tell me "no, she needs to stay on the Amiodarone until I see her". So we planned to go back in 10 days to refill again for a 30 day amount. Luckily we are a little ahead of ourselves on refill time with both the Amiodarone and the Propanolol, so instead of us having just 10 days or so before needing to go back we ended up with 18 days worth of Amiodarone left, so now I'm stuck with a tough decision. Miss K now has 9 days left of Amiodarone, her next Cardiology appointment is in 20 days, that leaves us with 11 days. The Amiodarone is kind of expensive to fill, especially on our already stretched budget, I really don't want to pay for a 30 day refill with only 11 days before her Cardiology appointment and have him take her off of it thus wasting that expensive stuff, but there's still the chance he may keep her on it for another few months. I guess I'm asking for suggestions or advice...I can see if the pharmacy will just give us the amount needed to make it to her Cardiology appointment thus saving us a little money and then go back for another refill on appointment day if needed or I can just get the full refill in 9 days and if the Cardiologist takes her off of it keep what's left in case she doesn't do well without it and we need to put her back on it. It wouldn't be such a tough decision for me if: A) the Amiodarone wasn't so expensive and B) the pharmacy wasn't so far away with a 24 hour notice requirement for compound refills.
3.21.2012
A Cute Photo...
I was reading about a cute baby boy named Ryker who is dealing with Heteratoxy, born in March 2012, and came across a cute little picture of him that reminded me of Miss K so I found one of Miss K's hospital pictures and guess what? They are very similar photos lol! Here is Miss K in her first few days of life :o):
3.16.2012
Story Time...
Since I don't have much to update about (always a great thing with Miss K) and it's been quite a while since I posted last I thought I'd share a few stories :o).
In January I had a lady schedule to come to my home for a workshop to learn more about Heritage Makers. She brought a few friends along and we had a lot of fun talking and sharing life stories. When Miss K woke up from her nap and came out to see everyone the lady asked if she had met us before, other than at the county fair where she had learned about my business. I told her she looked familiar as well but I didn't know why, I assumed it was because I was remembering meeting her at the fair. Then she asked how old Miss K was and commented on how cute she was, etc., as always her smallish size was brought up and I explained she had a heart condition, that's when the lady realized where she had seen us before, she asked if we had brought Miss K into the local ER before and I said "yes, she was in SVT at 280 BPM" and she said "I was the one who did her work up in the ER!" Then she turned to her friends and said "this is that baby that came in last summer! The one who scared us all to death!" and the other ladies, who just happened to be nurses at the same hospital as well, all said "yeah! We remember that story! You guys were sure she wasn't going to make it!" Miss K has been quite the talk of the town since her scary SVT beginning!
About a month or two ago we were at Home Depot picking up some supplies. At checkout the girl was so nice and talkative. She saw the baby carrier in the shopping cart and asked if she could see the baby. Our conversation went sort of like this (though for sure not word for word, lol):
Checker: Boy or girl?
Me: Girl (lifting the cover)
Checker: Aww! She's so cute! And so tiny!
Me: She's actually kind of chunky, almost 16 pounds!
Checker: How old?
Me: Almost 6 months.
Checker: Awww, my baby girl is almost 13 months, I can't believe how big she is now, seeing younger babies always makes me miss the tiny baby she was.
Me: Yeah, she was quite tiny to begin with.
Checker: My baby was 5 pounds 14 ounces.
Me: Wow! My baby was 5.12!
Checker: My baby was delivered via emergency c-section.
Me: Mine too! Her heart was beating too fast.
Checker: My baby's was too! Does your baby have SVT?
Me: Yes she does! Your's does too?
Checker: Yes! She was life flighted to Primary Children's last fall in heart failure.
Me: I'm so sorry! Is she alright?
Checker: She's great, she's now on heart medications.
Me: Our little one is too.
We held up the line of customers behind me while she gave me her Facebook name so we could be friends and keep up with each other. Quite the coincidence to run into another SVT mom right here in town! Even more crazy that her baby is not much older than ours. It makes me wonder what is in the water here, lol!
We were in the Pediatrician's office last week to make sure Miss K's congestion wasn't moving to her ears or a product of an illness. While there the Doctor we were seeing (her primary Pediatrician wasn't available early enough for us) asked what medications she was currently taking, as always when I told him she was on Amiodarone and Propanolol he was quite shocked. I told him she had SVT and he got all excited, not uncommon lol. He told me a crazy story about a baby girl who came in to see him last fall, she was all flushed and didn't look like she felt well at all and when he listened to her lungs and heart he was shocked to find that her heart sounded like a little humming bird it was beating so fast. He realized this baby was possibly in heart failure and in his words "I took a deep breath and calmed myself before telling the mom that I thought she should probably take her baby over to the ER." He then said that within minutes of her leaving the Pediatricians office life flight flew in and took the baby girl to Primary Children's, the baby was in heart failure due to SVT. Turns out I'm pretty sure this baby he was talking about is the same baby who's mother I talked to in Home Depot!
We had to take Daddy to the after hours clinic to have a Strep Test done last week. While there the Doctor (who was new to us, we had never visited him before) was curious as to why exactly we wanted a Strep Test if Daddy wasn't having for sure Strep Throat symptoms, we let him know Miss K had a heart condition and we needed to keep her as healthy as possible. He completely understood and of course, being a doctor he wanted to know what her condition was. We told him she had SVT and he immediately got curious. He then asked, "wait, is she the baby that was in the ER here last summer?" Lol, we definitely started to laugh and told him yes she was, he was amazed to see she seemed to be doing great. I asked him if he was in the ER at the time and he told us that he was not, he had just gotten off shift in the after hours clinic when it was paged out to everyone. Yup, Miss K was definitely the talk of the town.
Miss K is doing great :o). Our next upcoming visits are in April, first to see another Ophthalmologist for a second opinion about her eyes (from Amiodarone side effects) just as a precaution to make Mommy feel better, then we'll see her Cardiologist a few weeks after for her bi-monthly checkup and then in May we'll have Miss K's regular well baby check for 9 months (wow, can she really be coming up on her 9 month mark? Time goes WAY too fast!). I feel great about how things are going and I'm confident these upcoming appointments are going to go very well for us :o).
In January I had a lady schedule to come to my home for a workshop to learn more about Heritage Makers. She brought a few friends along and we had a lot of fun talking and sharing life stories. When Miss K woke up from her nap and came out to see everyone the lady asked if she had met us before, other than at the county fair where she had learned about my business. I told her she looked familiar as well but I didn't know why, I assumed it was because I was remembering meeting her at the fair. Then she asked how old Miss K was and commented on how cute she was, etc., as always her smallish size was brought up and I explained she had a heart condition, that's when the lady realized where she had seen us before, she asked if we had brought Miss K into the local ER before and I said "yes, she was in SVT at 280 BPM" and she said "I was the one who did her work up in the ER!" Then she turned to her friends and said "this is that baby that came in last summer! The one who scared us all to death!" and the other ladies, who just happened to be nurses at the same hospital as well, all said "yeah! We remember that story! You guys were sure she wasn't going to make it!" Miss K has been quite the talk of the town since her scary SVT beginning!
About a month or two ago we were at Home Depot picking up some supplies. At checkout the girl was so nice and talkative. She saw the baby carrier in the shopping cart and asked if she could see the baby. Our conversation went sort of like this (though for sure not word for word, lol):
Checker: Boy or girl?
Me: Girl (lifting the cover)
Checker: Aww! She's so cute! And so tiny!
Me: She's actually kind of chunky, almost 16 pounds!
Checker: How old?
Me: Almost 6 months.
Checker: Awww, my baby girl is almost 13 months, I can't believe how big she is now, seeing younger babies always makes me miss the tiny baby she was.
Me: Yeah, she was quite tiny to begin with.
Checker: My baby was 5 pounds 14 ounces.
Me: Wow! My baby was 5.12!
Checker: My baby was delivered via emergency c-section.
Me: Mine too! Her heart was beating too fast.
Checker: My baby's was too! Does your baby have SVT?
Me: Yes she does! Your's does too?
Checker: Yes! She was life flighted to Primary Children's last fall in heart failure.
Me: I'm so sorry! Is she alright?
Checker: She's great, she's now on heart medications.
Me: Our little one is too.
We held up the line of customers behind me while she gave me her Facebook name so we could be friends and keep up with each other. Quite the coincidence to run into another SVT mom right here in town! Even more crazy that her baby is not much older than ours. It makes me wonder what is in the water here, lol!
We were in the Pediatrician's office last week to make sure Miss K's congestion wasn't moving to her ears or a product of an illness. While there the Doctor we were seeing (her primary Pediatrician wasn't available early enough for us) asked what medications she was currently taking, as always when I told him she was on Amiodarone and Propanolol he was quite shocked. I told him she had SVT and he got all excited, not uncommon lol. He told me a crazy story about a baby girl who came in to see him last fall, she was all flushed and didn't look like she felt well at all and when he listened to her lungs and heart he was shocked to find that her heart sounded like a little humming bird it was beating so fast. He realized this baby was possibly in heart failure and in his words "I took a deep breath and calmed myself before telling the mom that I thought she should probably take her baby over to the ER." He then said that within minutes of her leaving the Pediatricians office life flight flew in and took the baby girl to Primary Children's, the baby was in heart failure due to SVT. Turns out I'm pretty sure this baby he was talking about is the same baby who's mother I talked to in Home Depot!
We had to take Daddy to the after hours clinic to have a Strep Test done last week. While there the Doctor (who was new to us, we had never visited him before) was curious as to why exactly we wanted a Strep Test if Daddy wasn't having for sure Strep Throat symptoms, we let him know Miss K had a heart condition and we needed to keep her as healthy as possible. He completely understood and of course, being a doctor he wanted to know what her condition was. We told him she had SVT and he immediately got curious. He then asked, "wait, is she the baby that was in the ER here last summer?" Lol, we definitely started to laugh and told him yes she was, he was amazed to see she seemed to be doing great. I asked him if he was in the ER at the time and he told us that he was not, he had just gotten off shift in the after hours clinic when it was paged out to everyone. Yup, Miss K was definitely the talk of the town.
Miss K is doing great :o). Our next upcoming visits are in April, first to see another Ophthalmologist for a second opinion about her eyes (from Amiodarone side effects) just as a precaution to make Mommy feel better, then we'll see her Cardiologist a few weeks after for her bi-monthly checkup and then in May we'll have Miss K's regular well baby check for 9 months (wow, can she really be coming up on her 9 month mark? Time goes WAY too fast!). I feel great about how things are going and I'm confident these upcoming appointments are going to go very well for us :o).
2.23.2012
A New Routine
Miss K is finally cutting teeth :o). And since her first tooth tried to come through it came to my attention that it is now time to start thinking about taking care of those precious teeth. I found out how bad compound medications are for teeth :o(, and to top it off Miss K needs flavoring in her Amiodarone, said flavoring is actually just regular snow cone syrup, packed FULL of sugar :o(. We're giving Miss K a double whamy so to speak, her teeth are doomed :o(. So we've added a new step to our routine. Immediately after administering any of her medications we are now brushing her gums with a baby tooth and gum cleanser kit. Luckily Miss k likes it, she thinks it's funny :o).
At her 6 month Well Baby check up her pediatrician prescribed vitamins with fluoride in them, he did the same for my son when he was 6 months, it's something our pediatrician likes to do for breastfed babies to makes sure they're getting what they need. We're going to be VERY diligent getting Miss K to take her vitamins however we can so that she can get the Fluoride to keep her teeth strong.
Here's to hoping we can protect her little teeth from rotting out of her gums because of the Amiodarone and flavoring!
At her 6 month Well Baby check up her pediatrician prescribed vitamins with fluoride in them, he did the same for my son when he was 6 months, it's something our pediatrician likes to do for breastfed babies to makes sure they're getting what they need. We're going to be VERY diligent getting Miss K to take her vitamins however we can so that she can get the Fluoride to keep her teeth strong.
Here's to hoping we can protect her little teeth from rotting out of her gums because of the Amiodarone and flavoring!
2.21.2012
A Visit with an Ophthalmologist
The eye center Miss K's Cardiologist referred her to couldn't get her in until April, her cardiologist wanted her seen ASAP. I made the decision to get the name of a Pediatric Ophthalmologist from Miss K's Pediatrician instead, hoping they could get her in sooner, and was in luck, they were able to get her in within the week. Today was the day.
I was a little nervous about seeing this Eye Doctor, I had no idea if he would know anything about the medication Amiodarone, or if he would know what he was even looking for.
Now that the appointment has come and gone I'm still not sure the Doctor knew what he was looking for, he knew quite a bit about Amiodarone surprisingly. The appointment only took an hour, that was including waiting 30 minutes for Miss K's eyes to dilate, this seemed odd to me since the eye center her Cardiologist recommended said Miss K's appointment would take 2-5 hours??? The Eye Doctor took a few minutes to look at Miss K and then told me he didn't understand why I was there, he said she was too young for us to know anything about any side effects showing in her eyes and that he didn't think there was anything to worry about with her. He then asked if I had any personal reason to have her seen by him, of course my only reason was because her cardiologist wanted her seen ASAP. So this Eye Doctor's plan is to look up Miss K's Amiodarone ratios (her dose to weight ratio and the milligrams to milliliters ratio of her compound mix) and see what the clinical outcomes say about the possible side effects in the eyes, he said if there was anything relevant to Miss K's situation that he'd call me, otherwise she's fine.
Now I'm trying to decide if we can cancel Miss K's scheduled appointment in April with the other eye center or if I should keep it for a second, possibly more informed, opinion. I'm not quite sure what to do...I really feel that Miss K's eyes are just fine, but I want to make sure my feelings are correct and today's eye doctor didn't really help me out here.
I was a little nervous about seeing this Eye Doctor, I had no idea if he would know anything about the medication Amiodarone, or if he would know what he was even looking for.
Now that the appointment has come and gone I'm still not sure the Doctor knew what he was looking for, he knew quite a bit about Amiodarone surprisingly. The appointment only took an hour, that was including waiting 30 minutes for Miss K's eyes to dilate, this seemed odd to me since the eye center her Cardiologist recommended said Miss K's appointment would take 2-5 hours??? The Eye Doctor took a few minutes to look at Miss K and then told me he didn't understand why I was there, he said she was too young for us to know anything about any side effects showing in her eyes and that he didn't think there was anything to worry about with her. He then asked if I had any personal reason to have her seen by him, of course my only reason was because her cardiologist wanted her seen ASAP. So this Eye Doctor's plan is to look up Miss K's Amiodarone ratios (her dose to weight ratio and the milligrams to milliliters ratio of her compound mix) and see what the clinical outcomes say about the possible side effects in the eyes, he said if there was anything relevant to Miss K's situation that he'd call me, otherwise she's fine.
Now I'm trying to decide if we can cancel Miss K's scheduled appointment in April with the other eye center or if I should keep it for a second, possibly more informed, opinion. I'm not quite sure what to do...I really feel that Miss K's eyes are just fine, but I want to make sure my feelings are correct and today's eye doctor didn't really help me out here.
2.14.2012
And Yet Another SVT Episode :o(
Miss K had a bad afternoon yesterday. It started at about 1pm after her morning nap, she woke up smiling but it didn't last long. She was fussy and hard to make happy until her afternoon nap, I thought she was just tired and would sleep her usual 3 hours to wake up happy for the evening but I was SO wrong :o(. Miss K only slept 30 minutes and woke up screaming, I rocked her and bounced her and tried everything I could think of to get her back to sleep, she got her self really worked up, I checked her heart rate constantly throughout this spurt of crankiness and was happy to hear it beating at a good steady, slow pace of about 120 BPM like normal the whole time. After almost an hour of rocking and bouncing she finally calmed down and fell into a very light sleep. I spent the next hour keeping her big brother VERY quiet so as not to wake the screaming, cranky girl again. When her Daddy got home she woke up immediately and wasn't happy about it, no matter how quiet my husband is the kids just know he's home and asleep or not they want to be with him. Miss K spent the rest of the evening being crabby and fussy. At bedtime I was trying to make her happy so she wouldn't keep her brother up, I noticed her heart seemed to be beating out of her chest under my hand so I grabbed the stethoscope for about the hundredth time yesterday and sure enough it was racing. I am happy to say that it wasn't beating so fast we couldn't count it and I was able to keep count for a whole minute, I came up with about 192 BPM. It was hard to know exactly what to do for her, we've never been through an episode like this before. Miss K was fine, just fussy and acting like she didn't feel well and her heart wasn't in "true SVT" as her Cardiologist would say. True SVT is a heart rate over 210 BPM. So her Daddy and I just decided to ride it out and see what happened, we listened to her heart about every 2-3 minutes to make sure it didn't beat any faster. At 10pm we were able to give her her Propanolol and then I could feed her for the night, while eating Miss K finally relaxed completely and soon after that her heart rate slowed to it's normal 120's and she fell asleep. It was a stressful moment for us, we knew she was fine but the whole not knowing if she would stay below 200 BPM or if she was inevitably going to race above 200 BPM and pass out like her first episode of this year was nerve racking. I'll be logging this episode in her little log book and hope and pray she doesn't have any more or worse episodes. Any "true SVT" episodes that end up being scary will inevitably mean a medication adjustment, most likely upping her Amiodarone, which is something we DO NOT wish to do if we can avoid it.
2.07.2012
Home 2-7-2012 Miss K is 6 Months Old!
Miss K had her 6 month Cardiology check up today. It went well so say the least...I'll leave out the whole complaint of it taking us over 4 hours to get through the visit and back home again, let's just say: I thought taking her to the nearest center her cardiologist is in would take 1/2 the time as taking her to the usual place we go to, I was wrong it took the same amount of time, the only difference was we didn't spend 3 hours of our total time driving, but instead we spent that time waiting and waiting, not quite sure what's worse?
Anyway, on to today's results and decisions!
Miss K is doing great heart wise. Her little heart was beating at 128 BPM today at her appointment, which is great :o). My only personal concern was her weight, she weighed 8 ounces less today than she did 2 weeks ago, I'm hoping that's not true and that their scales are just weighing differently than the pediatricians, we'll see tomorrow at her 6 month well baby check :o).
We decided to keep her on the Amiodarone a little longer. As her Mommy I just don't feel like she's ready to be off of it, her cardiologist agreed though he was more than willing to take her off of it today if I wanted him to. So essentially it was my decision to keep her on it. Those 2 SVT episodes last month really scared me into it. But the good news is that we decided to keep her on the same dose instead of adjusting it, YAY! We're thinking maybe she can be weaned slowly off the Amiodarone for good if we keep the dose the same and let her outgrow it, as long as she doesn't have a lot more SVT episodes that is. I mentioned 2 weeks ago that her cardiologist upped her dose of Propanolol over the phone due to her recent SVT episodes, so the plan is to try just adjusting the Propanolol in the future IF she does have more episodes. If Miss K quits having SVT episodes by her 1st birthday then we'll stop the Amiodarone and see if she can do without it. As of today Miss K is taking 6 ML's Amiodarone once daily and 2 ML's Propanolol every 8 hours.
Because we're keeping Miss K on the Amiodarone we are being referred to an Ophthalmologist to check her eyes and make sure the Amiodarone isn't harming them (see Side Effects).
All my concerns were considered. Most were explained and talked about, some I was told to ask the Pediatrician as they didn't seem to be heart related.
Miss K CAN take Tylenol, thank heavens! Now I can feel good about making her ear pain go away orally! The numbing ear drops do work but I feel Tylenol would work better.
Her sweating while eating did not concern the cardiologist, he felt sure it was caused by her congestion and that her heart is just fine. I mentioned that when she sweats profusely (from being too warm) she get's really stinky, sweaty stinky, and I asked if anyone else has mentioned that issue who was taking Propanolol and/or Amiodarone, the answer was "no, not that they knew of" so I guess Miss K could just be a stinky sweater (I sure hope not though!).
I asked about her joints popping, and if this could be due to medications, the answer was "no", we need to bring it up with the pediatrician tomorrow. Hopefully this is nothing to be concerned about but we'll see!
I asked about antibiotic interactions with her heart medications. The answer was "anything the pediatricians usually use is safe, there are 3 or 4 that could be issued but they're not in the top choices for pediatricians to use", luckily Miss K's pediatrician is VERY observant and careful and I don't need to remember the names of those "3 or 4" antibiotics, lol! But I feel better knowing that giving her antibiotics for her ears isn't going to interfere with her medications.
I asked about her Thrush issues. This is something we've been battling with her for about 4 months now, it comes and goes. We've tried treating it with Nystatin but it didn't work, I tried Probiotics and they did not work either, last resort was Gentian Violet and it did work but as soon as it wore off on the 3rd day of application the Thrush came back :o( so Miss K has been treated with it 3 times now and is ready for it again. As for the heart medications being the culprit, the answer was "not likely", Miss K is just one of those babies who gets it and keeps it :o(. She should outgrow it in time. I asked because her Pediatrician mentioned one of her heart medications could be the reason the Thrush wouldn't go away, not that it is the cause, just that it could be helping keep it around.
I asked about our method of giving Miss K her Propanolol. She LOVES to spit this one out and refuses to swallow it. One day out of desperation I found that if I gave her a "chaser" dose of Gripe Water (please note, this link says Gripe water may contain Alcohol, the brands of Gripe Water I use DO NOT contain Alcohol, if you find one that does I would NOT suggest using it for your infant) she would swallow the Propanolol without complaint, she LOVES the taste of Gripe Water for some reason. I was only concerned that there may be an ingredient that could interact with her heart medications. The cardiologist couldn't find any reason I shouldn't do it so we will definitely keep it up!
My last, and biggest, concern was her Potassium levels. In the beginning when she was hospitalized she had a large muscle twitch in her right side that the Neurologist attributed to possible seizure activity though they really didn't think it was seizures she was having. They put her on Keppra just in case and asked that we have an MRI done a few months later. When I was looking back in my journal about those few weeks I noticed that these "twitches" were happening at the same time they found her Potassium levels were too high, so I looked it up on the WWW ;o) and read up about signs and symptoms of Potassium levels being off and found that there was a slight possibility that Miss K's "twitching" could have been caused by the high levels of Potassium in her system. Last week Miss K started this funny little head thing, something that in a normal, perfectly healthy baby, wouldn't draw anyone's attention. It's VERY likely it's just a new little quirk about Miss K, the first time I noticed it she had a headband on, she hates headbands so I think that maybe she was just trying to rub it off. I'm still a little concerned and will be asking her pediatrician about it tomorrow but the Cardiologist didn't think it was anything to worry about. When I mentioned the Potassium levels he was more than willing to order a Potassium check along with her other usual blood work.
Amazingly the Cardiologist called me about 2 hours after I got home to tell me that her blood work all came back and it's all PERFECT, I did a little dance :o), I'm always stressed about what her blood work looks like, I panic when he calls thinking "this is the day that he tells me the Amiodarone is killing her", so when he tells me it all looks great I can't help but dance and sing :o).
Anyway, on to today's results and decisions!
Miss K is doing great heart wise. Her little heart was beating at 128 BPM today at her appointment, which is great :o). My only personal concern was her weight, she weighed 8 ounces less today than she did 2 weeks ago, I'm hoping that's not true and that their scales are just weighing differently than the pediatricians, we'll see tomorrow at her 6 month well baby check :o).
We decided to keep her on the Amiodarone a little longer. As her Mommy I just don't feel like she's ready to be off of it, her cardiologist agreed though he was more than willing to take her off of it today if I wanted him to. So essentially it was my decision to keep her on it. Those 2 SVT episodes last month really scared me into it. But the good news is that we decided to keep her on the same dose instead of adjusting it, YAY! We're thinking maybe she can be weaned slowly off the Amiodarone for good if we keep the dose the same and let her outgrow it, as long as she doesn't have a lot more SVT episodes that is. I mentioned 2 weeks ago that her cardiologist upped her dose of Propanolol over the phone due to her recent SVT episodes, so the plan is to try just adjusting the Propanolol in the future IF she does have more episodes. If Miss K quits having SVT episodes by her 1st birthday then we'll stop the Amiodarone and see if she can do without it. As of today Miss K is taking 6 ML's Amiodarone once daily and 2 ML's Propanolol every 8 hours.
Because we're keeping Miss K on the Amiodarone we are being referred to an Ophthalmologist to check her eyes and make sure the Amiodarone isn't harming them (see Side Effects).
All my concerns were considered. Most were explained and talked about, some I was told to ask the Pediatrician as they didn't seem to be heart related.
Miss K CAN take Tylenol, thank heavens! Now I can feel good about making her ear pain go away orally! The numbing ear drops do work but I feel Tylenol would work better.
Her sweating while eating did not concern the cardiologist, he felt sure it was caused by her congestion and that her heart is just fine. I mentioned that when she sweats profusely (from being too warm) she get's really stinky, sweaty stinky, and I asked if anyone else has mentioned that issue who was taking Propanolol and/or Amiodarone, the answer was "no, not that they knew of" so I guess Miss K could just be a stinky sweater (I sure hope not though!).
I asked about her joints popping, and if this could be due to medications, the answer was "no", we need to bring it up with the pediatrician tomorrow. Hopefully this is nothing to be concerned about but we'll see!
I asked about antibiotic interactions with her heart medications. The answer was "anything the pediatricians usually use is safe, there are 3 or 4 that could be issued but they're not in the top choices for pediatricians to use", luckily Miss K's pediatrician is VERY observant and careful and I don't need to remember the names of those "3 or 4" antibiotics, lol! But I feel better knowing that giving her antibiotics for her ears isn't going to interfere with her medications.
I asked about her Thrush issues. This is something we've been battling with her for about 4 months now, it comes and goes. We've tried treating it with Nystatin but it didn't work, I tried Probiotics and they did not work either, last resort was Gentian Violet and it did work but as soon as it wore off on the 3rd day of application the Thrush came back :o( so Miss K has been treated with it 3 times now and is ready for it again. As for the heart medications being the culprit, the answer was "not likely", Miss K is just one of those babies who gets it and keeps it :o(. She should outgrow it in time. I asked because her Pediatrician mentioned one of her heart medications could be the reason the Thrush wouldn't go away, not that it is the cause, just that it could be helping keep it around.
I asked about our method of giving Miss K her Propanolol. She LOVES to spit this one out and refuses to swallow it. One day out of desperation I found that if I gave her a "chaser" dose of Gripe Water (please note, this link says Gripe water may contain Alcohol, the brands of Gripe Water I use DO NOT contain Alcohol, if you find one that does I would NOT suggest using it for your infant) she would swallow the Propanolol without complaint, she LOVES the taste of Gripe Water for some reason. I was only concerned that there may be an ingredient that could interact with her heart medications. The cardiologist couldn't find any reason I shouldn't do it so we will definitely keep it up!
My last, and biggest, concern was her Potassium levels. In the beginning when she was hospitalized she had a large muscle twitch in her right side that the Neurologist attributed to possible seizure activity though they really didn't think it was seizures she was having. They put her on Keppra just in case and asked that we have an MRI done a few months later. When I was looking back in my journal about those few weeks I noticed that these "twitches" were happening at the same time they found her Potassium levels were too high, so I looked it up on the WWW ;o) and read up about signs and symptoms of Potassium levels being off and found that there was a slight possibility that Miss K's "twitching" could have been caused by the high levels of Potassium in her system. Last week Miss K started this funny little head thing, something that in a normal, perfectly healthy baby, wouldn't draw anyone's attention. It's VERY likely it's just a new little quirk about Miss K, the first time I noticed it she had a headband on, she hates headbands so I think that maybe she was just trying to rub it off. I'm still a little concerned and will be asking her pediatrician about it tomorrow but the Cardiologist didn't think it was anything to worry about. When I mentioned the Potassium levels he was more than willing to order a Potassium check along with her other usual blood work.
Amazingly the Cardiologist called me about 2 hours after I got home to tell me that her blood work all came back and it's all PERFECT, I did a little dance :o), I'm always stressed about what her blood work looks like, I panic when he calls thinking "this is the day that he tells me the Amiodarone is killing her", so when he tells me it all looks great I can't help but dance and sing :o).
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