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).
10.28.2012
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.
9.26.2012
SVT
What a bad week we have been having :o(, I hope it gets better after this "hump day" rather than staying the same or, I pray not, worse!
Sunday night Daddy couldn't find the syringe we usually use to give Miss K her Propanolol so he pulled a "new" one from the cupboard. He failed to check and make sure it wasn't plugged though. Propanolol is crazy weird, when left spilled on something or left in an unused syringe for days it will harden like hard candy and it takes boiling water and lots of patience to get it out. The syringe Daddy happened to choose was one of the old ones we hadn't used in a while that did not get rinsed out therefore it was plugged...and he didn't notice. So Sunday night he thought he gave Miss K her Propanolol but instead he gave her absolutely nothing, the syringe did not fill even though it looked like it did since Propanolol is clear as water. That's 1 skipped dose. Then Monday morning I gave her Propanolol in the same syringe, not knowing it was a different one than what we had been using before therefore I also did not check it. That's 2 skipped doses in one 24 hour period, back to back. Her afternoon dose was when I figured it out, I "filled" the syringe and gave it to her...but realized she never swallowed, she just smacked her lips and gave me a funny look like "what was that supposed to be Mom?" so at this point I inspected the syringe I was using and figured out what had happened. I got a new, clean syringe out and gave her a real dose of Propanolol and then prayed she would do OK without the other two doses.
Monday I also realized Miss K did not feel well and was acting like she had an ear infection so I got her in to see her Pediatrician. She showed all the classic signs through the whole appointment but when examined she had no redness or inflamation, not in her ears or her throat. Her Pediatrician did notice that her back gums are swollen and she for sure has molars coming in, he attributed her symptoms to this and gave her a clean bill of health. He even said her heart sounded perfect.
Monday night Miss K spent the night playing in her crib, literally all night. No crying just sweet talking and playing.
Tuesday morning Miss K woke up with a fever, the first fever she has ever had. It was at 101 F. I gave her Ibuprophine and the fever came down pretty quickly but she spent the day miserable and crying. She even fell asleep in the middle of the front room floor while playing, something she normally would NEVER do. She took an hour nap but woke up with the fever all over again. Her heart rate stayed at a steady 150-160 throughout the day while she was awake and active, and while sleeping it was in the 130's. Her normal active heart rate is 100-110 and her normal resting heart rate is between 80-90. I gave her Tylenol to help with the returned fever and called PCMC. At this point it was after hours so I had to have the on call Pediatric Cardiologist paged. I asked him about the high heart rate and told him her symptoms all day, he assured me she was fine and that it was just high because of the fever and possibly dehydration. It made me feel somewhat better hearing this and I felt comfortable putting her to bed last night with another dose of Ibuprophine knowing that she should be OK.
Again Miss K spent the night playing in her crib off and on, she didn't sleep much at all.
This morning she woke up with a lower fever of about 99 F. I held off giving her anything for it so that it could burn off whatever illness she may be fighting. But around 11:00am she started to get fussy again and just wanted to be held. I picked her up for the dozenth time that morning to find that her heart felt like it was beating out of her chest. I check her to find that she was in SVT :o(. It took me almost 5 minutes to get her out of it. Then I gave her some Ibuprophine for the fever and whatever pain she was obviously in. An hour later, after constant tears and miserable crying, I found that she was in SVT yet again. This time she was upset and the only thing she thought could make her happy was sleep but I couldn't let her sleep until I knew she was out of SVT. I tried our usual Physical Maneuvers with no success. After 10 minutes of trying Daddy came home for lunch and suggested we give in and try the icebag treatment. I hate this one. But I gave in and pulled out the frozen peas, poured some into a ziplock baggie and we sat on the floor together with Miss K. Daddy held her in his arms and I placed the bag on her head, I decided to try the nicer version and just put the bag on her forehead and the bridge of her nose rather than the recommended suffocation version. We got lucky and it did work, on the first try. It really upset her though and had her crying so hard she had the hiccups :o(.
After all that stress was over I rocked her to sleep and put her down for a very early nap, where she is right now. I've been checking on her constantly and at this moment I know for a fact that her heart rate is in the 120's.
The 2 missed doses were very bad timing. Miss K has a hard time being sick and it never fails when she doesn't feel well she has SVT episodes. We just had to top it off with a high fever, something that makes every person (healthy or not) have a higher heart rate than normal. Poor baby :o(.
**Added Note:
Miss K had 1 more SVT episode before the end of the day. 3 in one day...Wow. This last episode required the ice treatment again. It was tough since Miss K knew what was coming and started to fight it immediately, she cried and was heartbroken that we would do such a mean thing again :o(. But it did work. Miss K ended the day with a much better active heart rate of about 120.
Sunday night Daddy couldn't find the syringe we usually use to give Miss K her Propanolol so he pulled a "new" one from the cupboard. He failed to check and make sure it wasn't plugged though. Propanolol is crazy weird, when left spilled on something or left in an unused syringe for days it will harden like hard candy and it takes boiling water and lots of patience to get it out. The syringe Daddy happened to choose was one of the old ones we hadn't used in a while that did not get rinsed out therefore it was plugged...and he didn't notice. So Sunday night he thought he gave Miss K her Propanolol but instead he gave her absolutely nothing, the syringe did not fill even though it looked like it did since Propanolol is clear as water. That's 1 skipped dose. Then Monday morning I gave her Propanolol in the same syringe, not knowing it was a different one than what we had been using before therefore I also did not check it. That's 2 skipped doses in one 24 hour period, back to back. Her afternoon dose was when I figured it out, I "filled" the syringe and gave it to her...but realized she never swallowed, she just smacked her lips and gave me a funny look like "what was that supposed to be Mom?" so at this point I inspected the syringe I was using and figured out what had happened. I got a new, clean syringe out and gave her a real dose of Propanolol and then prayed she would do OK without the other two doses.
Monday I also realized Miss K did not feel well and was acting like she had an ear infection so I got her in to see her Pediatrician. She showed all the classic signs through the whole appointment but when examined she had no redness or inflamation, not in her ears or her throat. Her Pediatrician did notice that her back gums are swollen and she for sure has molars coming in, he attributed her symptoms to this and gave her a clean bill of health. He even said her heart sounded perfect.
Monday night Miss K spent the night playing in her crib, literally all night. No crying just sweet talking and playing.
Tuesday morning Miss K woke up with a fever, the first fever she has ever had. It was at 101 F. I gave her Ibuprophine and the fever came down pretty quickly but she spent the day miserable and crying. She even fell asleep in the middle of the front room floor while playing, something she normally would NEVER do. She took an hour nap but woke up with the fever all over again. Her heart rate stayed at a steady 150-160 throughout the day while she was awake and active, and while sleeping it was in the 130's. Her normal active heart rate is 100-110 and her normal resting heart rate is between 80-90. I gave her Tylenol to help with the returned fever and called PCMC. At this point it was after hours so I had to have the on call Pediatric Cardiologist paged. I asked him about the high heart rate and told him her symptoms all day, he assured me she was fine and that it was just high because of the fever and possibly dehydration. It made me feel somewhat better hearing this and I felt comfortable putting her to bed last night with another dose of Ibuprophine knowing that she should be OK.
Again Miss K spent the night playing in her crib off and on, she didn't sleep much at all.
This morning she woke up with a lower fever of about 99 F. I held off giving her anything for it so that it could burn off whatever illness she may be fighting. But around 11:00am she started to get fussy again and just wanted to be held. I picked her up for the dozenth time that morning to find that her heart felt like it was beating out of her chest. I check her to find that she was in SVT :o(. It took me almost 5 minutes to get her out of it. Then I gave her some Ibuprophine for the fever and whatever pain she was obviously in. An hour later, after constant tears and miserable crying, I found that she was in SVT yet again. This time she was upset and the only thing she thought could make her happy was sleep but I couldn't let her sleep until I knew she was out of SVT. I tried our usual Physical Maneuvers with no success. After 10 minutes of trying Daddy came home for lunch and suggested we give in and try the icebag treatment. I hate this one. But I gave in and pulled out the frozen peas, poured some into a ziplock baggie and we sat on the floor together with Miss K. Daddy held her in his arms and I placed the bag on her head, I decided to try the nicer version and just put the bag on her forehead and the bridge of her nose rather than the recommended suffocation version. We got lucky and it did work, on the first try. It really upset her though and had her crying so hard she had the hiccups :o(.
After all that stress was over I rocked her to sleep and put her down for a very early nap, where she is right now. I've been checking on her constantly and at this moment I know for a fact that her heart rate is in the 120's.
The 2 missed doses were very bad timing. Miss K has a hard time being sick and it never fails when she doesn't feel well she has SVT episodes. We just had to top it off with a high fever, something that makes every person (healthy or not) have a higher heart rate than normal. Poor baby :o(.
**Added Note:
Miss K had 1 more SVT episode before the end of the day. 3 in one day...Wow. This last episode required the ice treatment again. It was tough since Miss K knew what was coming and started to fight it immediately, she cried and was heartbroken that we would do such a mean thing again :o(. But it did work. Miss K ended the day with a much better active heart rate of about 120.
9.18.2012
It Seems I Spoke too Soon :o(.
Miss K had a breakthrough SVT episode this morning :o(. Her first one in 3 months :o(. Since January she's been quite good at having an episode once every 3 months, I should have been prepared for it instead of surprised this time.
Since last Thursday (9-13-12) we have been dealing with allergies, poor Miss K is miserable and can hardly breath through the congestion :o(. She was VERY congested last year starting a few days after coming home from PCMC, around this same time. We hoped, along with her Pediatrician, that it was not fall allergies but instead a reaction to being out in the open with all the dust and pollen that she was not used to due to being hospitalized for so long in a VERY sterile environment. No such luck. Our first adventure into an open area packed full of pollen and fall changes and Miss K woke up the next morning unable to breath and sneezing every 5 minutes.
So today the SVT could have been caused by any number of things. I seriously doubt it is due to the Amiodarone being fully out of her system though and I doubt she will ever be put back on it again for any reason. I also don't think she'll need her Propanolol dose adjusted, she hasn't gained hardly a few ounces since the last adjustment, but we'll see what she does in the next month before she goes back to see the EP Cardiologist. When she had her episode she a) was having a moment of extreme congestion and was being forced to breath from her mouth constantly, b) had just tripped over a toy and hurt herself causing one of those "fun" crying so hard she forgets to breath moments, and c) had just gained the hiccups from the crying, and not normal hiccups but the painful kind that sound like the poor kid is belching a huge bubble between hiccuping.
I could feel her heart with my hand, it felt fine that way though maybe a tiny bit fast. So I checked with the stethoscope to find that she was indeed in SVT, though I'm not sure if it was True SVT (True SVT is a heart rate over 210 BPM) or if she was just beating a little too fast for her normal heart rate as I didn't take the time to count it out but it surely didn't sound fast enough to be at 210+ BPM. I cradled her and blew in her face, the little stinker smiled and giggled through the Physical Maneuver lol and I was sure it wasn't going to work but she surprised me, when I listened with the stethoscope again she was beating at her normal heart rate. It took a mere 5 seconds from finding her in SVT to getting her out of it. I wish I was brave enough to wait it out and see if she could come out of it on her own, but I'm just not. I still fear she is still more likely to get stuck in it the longer she's allowed to keep that rate and that I'll end up taking her to the ER for help getting her out of it so I jump on the Physical Maneuvers as soon as I know she's in SVT and don't give her little heart a chance to try converting on it's own :o(.
I am disappointed, even though I shouldn't be surprised and should never have gotten my hopes up. I was looking forward to trying to take her off of the Propanolol, or at least bringing her down to 2 doses a day instead of 3, within the next 4-6 months but reality has hit today and I'm realizing this is most likely not a possibility for at least another 12 months if not longer :o(. Giving her the Propanolol really isn't the real issue...the real issue is that the longer she has to have the Propanolol and is actually having breakthrough SVT, no matter how often, the more likely it is that she will be getting a Catheter Ablation in the near future and that actually scares me to death. I know some will say I shouldn't worry and that their child or other children they know have had one and did great but I also know what I have been told by the EP Cardiologist and what I have read about Ablations, they are not invasive therefore not as dangerous as say Open Heart Surgery is but they are still dangerous in that the surgeon could cauterize the wrong area or could miss and hit a vital part of the heart causing serious damage. It terrifies me.
1 more month until Miss K's EP Cardiology appointment and hopefully you won't be hearing from us again until then, at least not bad news anyway ;o). Here's to hoping!
Since last Thursday (9-13-12) we have been dealing with allergies, poor Miss K is miserable and can hardly breath through the congestion :o(. She was VERY congested last year starting a few days after coming home from PCMC, around this same time. We hoped, along with her Pediatrician, that it was not fall allergies but instead a reaction to being out in the open with all the dust and pollen that she was not used to due to being hospitalized for so long in a VERY sterile environment. No such luck. Our first adventure into an open area packed full of pollen and fall changes and Miss K woke up the next morning unable to breath and sneezing every 5 minutes.
So today the SVT could have been caused by any number of things. I seriously doubt it is due to the Amiodarone being fully out of her system though and I doubt she will ever be put back on it again for any reason. I also don't think she'll need her Propanolol dose adjusted, she hasn't gained hardly a few ounces since the last adjustment, but we'll see what she does in the next month before she goes back to see the EP Cardiologist. When she had her episode she a) was having a moment of extreme congestion and was being forced to breath from her mouth constantly, b) had just tripped over a toy and hurt herself causing one of those "fun" crying so hard she forgets to breath moments, and c) had just gained the hiccups from the crying, and not normal hiccups but the painful kind that sound like the poor kid is belching a huge bubble between hiccuping.
I could feel her heart with my hand, it felt fine that way though maybe a tiny bit fast. So I checked with the stethoscope to find that she was indeed in SVT, though I'm not sure if it was True SVT (True SVT is a heart rate over 210 BPM) or if she was just beating a little too fast for her normal heart rate as I didn't take the time to count it out but it surely didn't sound fast enough to be at 210+ BPM. I cradled her and blew in her face, the little stinker smiled and giggled through the Physical Maneuver lol and I was sure it wasn't going to work but she surprised me, when I listened with the stethoscope again she was beating at her normal heart rate. It took a mere 5 seconds from finding her in SVT to getting her out of it. I wish I was brave enough to wait it out and see if she could come out of it on her own, but I'm just not. I still fear she is still more likely to get stuck in it the longer she's allowed to keep that rate and that I'll end up taking her to the ER for help getting her out of it so I jump on the Physical Maneuvers as soon as I know she's in SVT and don't give her little heart a chance to try converting on it's own :o(.
I am disappointed, even though I shouldn't be surprised and should never have gotten my hopes up. I was looking forward to trying to take her off of the Propanolol, or at least bringing her down to 2 doses a day instead of 3, within the next 4-6 months but reality has hit today and I'm realizing this is most likely not a possibility for at least another 12 months if not longer :o(. Giving her the Propanolol really isn't the real issue...the real issue is that the longer she has to have the Propanolol and is actually having breakthrough SVT, no matter how often, the more likely it is that she will be getting a Catheter Ablation in the near future and that actually scares me to death. I know some will say I shouldn't worry and that their child or other children they know have had one and did great but I also know what I have been told by the EP Cardiologist and what I have read about Ablations, they are not invasive therefore not as dangerous as say Open Heart Surgery is but they are still dangerous in that the surgeon could cauterize the wrong area or could miss and hit a vital part of the heart causing serious damage. It terrifies me.
1 more month until Miss K's EP Cardiology appointment and hopefully you won't be hearing from us again until then, at least not bad news anyway ;o). Here's to hoping!
9.16.2012
1 Month...
...since Miss K was taken off of the Amiodarone and...
She has done unbelievably awesome!
Just a few short weeks after taking her off the medication we noticed some things different in her behavior and health, good things :o):
She is WAY less constipated (see Side Effects). The poor thing has been so constipated since getting the Amiodarone and Propanolol into her system. We finally had to resort to giving her Miralax for relief when the Prunes and Applesauce quit working :o(. But within a few weeks of being off the Amiodarone she started having more regular bowl movements. They are still not as soft as they should be for her age but they are not as hard and definitely not as painful as they used to be. We have been able to cut the Miralax down to as needed instead of daily :o).
She is less sleepy! It was so hard for her to transition from 2 naps a day to just 1 but we had to do it because she just wasn't going to bed at a decent hour at night while taking 2 naps. While on the Amiodarone she just wanted to sleep, a lot. Since taking her off of it she has been just fine with taking only 1 nap daily and going to sleep at a great hour for bed time :o).
She has been so much happier through the day, very hard to believe for this baby since she has ALWAYS been the happiest baby around but she has gotten HAPPIER. We've had less crying and tantrums than before, and I completely attribute this to no longer being as tired as she used to be.
Within a week of being off the Amiodarone I did notice her heart rate went up. She used to be in the steady 90's when resting/sleeping and around 105 BPM when active but after taking her off the Amiodarone her heart rate went to around 107 BPM resting/sleeping and around 110-115 when active. And when she'd get upset/worked up while on the Amiodarone her heart rate always stayed around 105 BPM, now when she gets upset/worked up her heart beats quite a bit faster at around 125 BPM but this is FAR from being SVT in any way so I have not worried, it's actually more normal for a baby/child to have a higher heart rate while upset. At first I worried but then I remembered something important from the beginning of our journey with Miss K...her EP Cardiologist was never truly satisfied with Miss K's heart rate before, he was a bit concerned about how slow it was and confided in us that it was either the Amiodarone or a combination of both medications that was making her heart rate so low. Her QT Intervals were a bit long as well. Since we haven't had an EKG since taking her off of the Amiodarone we don't know how her QT Intervals are now but it actually seems reassuring that her heart rate is faster now. I feel her EP Cardiologist is going to be happy with how her heart is doing without the Amiodarone.
And of course having one less medication to give in the day is so much easier on all of us! The fact that it is the most dangerous medication that she is no longer taking makes us even more happy about all of this :o).
We have an appointment to see her EP Cardiologist near the end of October. It was supposed to be scheduled 1 month after her last one in August but they only had 2 appointment availabilities when I called, one in September and one in October, the October one just seemed more appropriate. I wanted her to be off the Amiodarone long enough to show real results when we went back in and this will be the case going in 2 1/2 months after stopping it. We are excited to see what the EP Cardiologist has to say.
She has done unbelievably awesome!
Just a few short weeks after taking her off the medication we noticed some things different in her behavior and health, good things :o):
She is WAY less constipated (see Side Effects). The poor thing has been so constipated since getting the Amiodarone and Propanolol into her system. We finally had to resort to giving her Miralax for relief when the Prunes and Applesauce quit working :o(. But within a few weeks of being off the Amiodarone she started having more regular bowl movements. They are still not as soft as they should be for her age but they are not as hard and definitely not as painful as they used to be. We have been able to cut the Miralax down to as needed instead of daily :o).
She is less sleepy! It was so hard for her to transition from 2 naps a day to just 1 but we had to do it because she just wasn't going to bed at a decent hour at night while taking 2 naps. While on the Amiodarone she just wanted to sleep, a lot. Since taking her off of it she has been just fine with taking only 1 nap daily and going to sleep at a great hour for bed time :o).
She has been so much happier through the day, very hard to believe for this baby since she has ALWAYS been the happiest baby around but she has gotten HAPPIER. We've had less crying and tantrums than before, and I completely attribute this to no longer being as tired as she used to be.
Within a week of being off the Amiodarone I did notice her heart rate went up. She used to be in the steady 90's when resting/sleeping and around 105 BPM when active but after taking her off the Amiodarone her heart rate went to around 107 BPM resting/sleeping and around 110-115 when active. And when she'd get upset/worked up while on the Amiodarone her heart rate always stayed around 105 BPM, now when she gets upset/worked up her heart beats quite a bit faster at around 125 BPM but this is FAR from being SVT in any way so I have not worried, it's actually more normal for a baby/child to have a higher heart rate while upset. At first I worried but then I remembered something important from the beginning of our journey with Miss K...her EP Cardiologist was never truly satisfied with Miss K's heart rate before, he was a bit concerned about how slow it was and confided in us that it was either the Amiodarone or a combination of both medications that was making her heart rate so low. Her QT Intervals were a bit long as well. Since we haven't had an EKG since taking her off of the Amiodarone we don't know how her QT Intervals are now but it actually seems reassuring that her heart rate is faster now. I feel her EP Cardiologist is going to be happy with how her heart is doing without the Amiodarone.
And of course having one less medication to give in the day is so much easier on all of us! The fact that it is the most dangerous medication that she is no longer taking makes us even more happy about all of this :o).
We have an appointment to see her EP Cardiologist near the end of October. It was supposed to be scheduled 1 month after her last one in August but they only had 2 appointment availabilities when I called, one in September and one in October, the October one just seemed more appropriate. I wanted her to be off the Amiodarone long enough to show real results when we went back in and this will be the case going in 2 1/2 months after stopping it. We are excited to see what the EP Cardiologist has to say.
9.04.2012
It's Been a Sad Month...
Since my last post almost a month ago recognizing Miss K's 1st birthday we have had a lot of sad news from the heart warriors world :o(.
I started following quite a few heart warrior babies via Facebook when Miss K was born. It's sad that it took having a heart baby of my own for me to realize what a large heart baby community there is. I started showing my support to a few of my favorites that I found on Facebook.
I'm sad to say that on Miss K's birthday my day actually started out with tears as I read on Facebook that Baby Pierce had passed unexpectedly in his sleep :o(. I was broken hearted over his sweet Momma's loss of her Heteratoxy warrior. Pierce fought long and hard and made it barely past his first birthday. I had been following Pierce since January when I found his page through another heart warrior.
Today I got on Facebook to check up on another favorite heart warrior Liam Lyon whom I have been following since about November 2011. I was shocked and sad to find the most recent status update saying that "Liam has his wings and Heaven has a new angel, that bright shining star up above, Liam has changed us forever. Fly high baby boy - so many friends there waiting - until we see you again, Grandma Nanci said it best - we're shattered. Your support has been overwhelming and we read many of your postings to him so he knew how much he was loved. We still BeLiEvE in Miracles." Again my day started out in tears :o(. Another baby lost to a CHD, Liam had Hypoplastic Left Heart Syndrome that was complicated by a surgery gone wrong when he was just a few months old. Liam was one strong little Lyon and he fought long and hard to stay here with his family.
My prayers go out to these two sweet families. I pray for comfort and peace through their losses and hope that they know their precious baby boys are with their Father in Heaven, healed and whole again watching over them and feeling their continuous love.
For those of you who read this blog I ask that you please keep a third baby heart warrior in your prayers today. Miracle Ryker whom I have been following on Facebook since his birth in early spring of this year. Ryker has Heteratoxy. Ryker and his family are from Northern Utah and amazingly I sat next to his parents in Primary Children's Medical Center one day as I was there for a Cardiology checkup for Miss K, they were there for another of many many fetal echo's on their unborn son. I feel a connection to this family that I cannot explain. About a month ago I saw some beautiful family pictures that a photographer donated her time and talents to take of this wonderful family and their son and I fell in love with them. This brought on a crazy idea that I decided to run with, I contacted the photographer and asked her if she would be willing to release the photos to Ryker's mother to use on my website Heritage Makers, she said yes with enthusiasm :o). I got on my Heritage Makers account to see how much HM money I had in there that I could donate to Ryker's family and found there wasn't much there but I so badly wanted to have a canvas donated to them for those beautiful photos so I got on two of my upline leaders Facebook pages and asked for help. The amount of responses was amazing to me and I was able to pull together $220 to be used on Heritage Makers between me and quite a few other Heritage Makers consultants. This is plenty for Ryker's family to have more than one canvas or a book or two to go with their canvas. I am excited to say that upon contacting Ryker's mommy, Rachel, to let her know what I wanted to do for her she jumped with joy. She checked out my website and fell in love and couldn't wait to get started. Within a week or two I received a phone call from Rachel herself thanking me for the donation and asking for all the details on how to get started on creating her canvas. We ended up chatting for over 45 minutes talking about our babies and relating experiences. It turns out Rachel was also born with SVT! She didn't have it corrected until quite later in life, after finding that the SVT was irritated during labor and delivery of her daughter. She went in and had a Catheter Ablation done and hasn't had SVT since. She was very understanding of Miss K's condition and she offered her support and encouragement to us, she wanted to make sure I knew that Miss K would be OK and would live a long healthy life just like she is :o). Rachel is such a sweet person :o). Maybe some day I can meet her in person...I can hope right? :o) This family needs our prayers today because Ryker is having a tough time, I don't have any details right now as the family is very occupied and hasn't had a chance to update on Facebook but when they say he's having a rough time and could use all the prayers he can get he must really need support. Please pray with us that he will stay strong and pull through like every other time.
I started following quite a few heart warrior babies via Facebook when Miss K was born. It's sad that it took having a heart baby of my own for me to realize what a large heart baby community there is. I started showing my support to a few of my favorites that I found on Facebook.
I'm sad to say that on Miss K's birthday my day actually started out with tears as I read on Facebook that Baby Pierce had passed unexpectedly in his sleep :o(. I was broken hearted over his sweet Momma's loss of her Heteratoxy warrior. Pierce fought long and hard and made it barely past his first birthday. I had been following Pierce since January when I found his page through another heart warrior.
Today I got on Facebook to check up on another favorite heart warrior Liam Lyon whom I have been following since about November 2011. I was shocked and sad to find the most recent status update saying that "Liam has his wings and Heaven has a new angel, that bright shining star up above, Liam has changed us forever. Fly high baby boy - so many friends there waiting - until we see you again, Grandma Nanci said it best - we're shattered. Your support has been overwhelming and we read many of your postings to him so he knew how much he was loved. We still BeLiEvE in Miracles." Again my day started out in tears :o(. Another baby lost to a CHD, Liam had Hypoplastic Left Heart Syndrome that was complicated by a surgery gone wrong when he was just a few months old. Liam was one strong little Lyon and he fought long and hard to stay here with his family.
My prayers go out to these two sweet families. I pray for comfort and peace through their losses and hope that they know their precious baby boys are with their Father in Heaven, healed and whole again watching over them and feeling their continuous love.
For those of you who read this blog I ask that you please keep a third baby heart warrior in your prayers today. Miracle Ryker whom I have been following on Facebook since his birth in early spring of this year. Ryker has Heteratoxy. Ryker and his family are from Northern Utah and amazingly I sat next to his parents in Primary Children's Medical Center one day as I was there for a Cardiology checkup for Miss K, they were there for another of many many fetal echo's on their unborn son. I feel a connection to this family that I cannot explain. About a month ago I saw some beautiful family pictures that a photographer donated her time and talents to take of this wonderful family and their son and I fell in love with them. This brought on a crazy idea that I decided to run with, I contacted the photographer and asked her if she would be willing to release the photos to Ryker's mother to use on my website Heritage Makers, she said yes with enthusiasm :o). I got on my Heritage Makers account to see how much HM money I had in there that I could donate to Ryker's family and found there wasn't much there but I so badly wanted to have a canvas donated to them for those beautiful photos so I got on two of my upline leaders Facebook pages and asked for help. The amount of responses was amazing to me and I was able to pull together $220 to be used on Heritage Makers between me and quite a few other Heritage Makers consultants. This is plenty for Ryker's family to have more than one canvas or a book or two to go with their canvas. I am excited to say that upon contacting Ryker's mommy, Rachel, to let her know what I wanted to do for her she jumped with joy. She checked out my website and fell in love and couldn't wait to get started. Within a week or two I received a phone call from Rachel herself thanking me for the donation and asking for all the details on how to get started on creating her canvas. We ended up chatting for over 45 minutes talking about our babies and relating experiences. It turns out Rachel was also born with SVT! She didn't have it corrected until quite later in life, after finding that the SVT was irritated during labor and delivery of her daughter. She went in and had a Catheter Ablation done and hasn't had SVT since. She was very understanding of Miss K's condition and she offered her support and encouragement to us, she wanted to make sure I knew that Miss K would be OK and would live a long healthy life just like she is :o). Rachel is such a sweet person :o). Maybe some day I can meet her in person...I can hope right? :o) This family needs our prayers today because Ryker is having a tough time, I don't have any details right now as the family is very occupied and hasn't had a chance to update on Facebook but when they say he's having a rough time and could use all the prayers he can get he must really need support. Please pray with us that he will stay strong and pull through like every other time.
8.07.2012
Miss K is 1 Year Old!
I can't believe how fast time has flown. My teeny, tiny 5 pound 12 ounce baby girl is now a chubby 17 pound 4 ounce one year old :o(, I love to watch her grow and change but I also just want her to stay little forever. We feel so blessed for all the prayers we have had answered and all the love and support we have had from Miss K's very beginning.
In the past year we have dealt with a lot starting with Miss K's heart condition, her 4 days in NICU after birth, her 3 weeks in PCMC after her release from NICU, seizures, herniated umbilical, monthly and every other month Cardiology appointments, constant and painful blood draws, medication 4 times daily, Thrush, Yeast Infections, Eczema, constant constipation from her medications among many other minor side effects (see also Amiodarone Side Effects), and more. But we made it through it all! Through everything Miss K has always been happy and smiling, nothing can get her down! She is our light, she brings so much happiness and love into our home.
So onto her Cardiology check up today :o). Miss K's EP Cardiologist was impressed with her today, and he is happy with her progress. He asked me if it was OK if we stopped giving her the Amiodarone, of course I responded with a resounding "YES!" and he laughed and told me to stop giving it to her. We are supposed to keep what is left just in case but she does not need to take it anymore. It will take at least a month for it to run out of her system completely and could take up to 2 weeks before we will truly know if she is done with it. He says that occasional SVT episodes while off the Amiodarone, as long as they are short and she is coming out of them mostly on her own, are a good thing. It will teach her heart that it doesn't need the Amiodarone anymore and hopefully help it to not depend on it anymore if it needs that help. And NO BLOOD DRAW today (see Side Effects)!!! We were so happy to just leave the exam room and be gone instead of heading down to the dreaded lab :o).
The EP Cardiologist also talked about taking her off of the Propanolol sometime in the next 6 months O_O. He smiled and told me he completely understood when I told him "I'm more than fine with taking her off of the Amiodarone, I know she'll do great, but the day you actually are serious about taking her off of the Propanolol I'm going to be scared to death and may try to talk you out of it." He said the parents who's child was in SVT 30 minutes to a day tops and never deal with it again are always a lot more eager to get rid of the medications than the parents, like us, who had to go through weeks in the hospital trying to get their child to stay out of SVT for at least a few hours/days. He told me he understood my fears of ending up right back where we started, which really isn't my fear, I know that if she isn't ready to be taken off the Propanolol we won't end up in the hospital I'll just be on the phone with him getting the OK to start giving it to her again and she'll be fine once it's back in her system. It's the fear of her having SVT period that makes me hesitate, I really don't want her going into it at all and knowing that the Propanolol is what is keeping her out of it makes me very hesitant. But it is exciting to hear him talk about trying to wean her in the next 6 months after having him tell us that she will not outgrow the PJRT and that she will end up taking the Propanolol until she can have the Catheter Ablation at 45-65 pounds.
We have some great parties planned to celebrate Miss K's first birthday :o). She is going to feel quite spoiled. Tomorrow she will officially be a year old and we will have a small cake with her grandparents from both sides and a few really great friends who adore her. This coming weekend we will have a HUGE birthday bash to really celebrate her birthday, and her big brother's who's birthday is in a mere 2 weeks, this party will be with my whole family. And in 2 weeks we will have another HUGE birthday bash with Daddy's family to celebrate both Miss K's first birthday and her big brother's 3rd birthday yet again :o).
Just a little look back on how far we have come with Miss K:
In the past year we have dealt with a lot starting with Miss K's heart condition, her 4 days in NICU after birth, her 3 weeks in PCMC after her release from NICU, seizures, herniated umbilical, monthly and every other month Cardiology appointments, constant and painful blood draws, medication 4 times daily, Thrush, Yeast Infections, Eczema, constant constipation from her medications among many other minor side effects (see also Amiodarone Side Effects), and more. But we made it through it all! Through everything Miss K has always been happy and smiling, nothing can get her down! She is our light, she brings so much happiness and love into our home.
So onto her Cardiology check up today :o). Miss K's EP Cardiologist was impressed with her today, and he is happy with her progress. He asked me if it was OK if we stopped giving her the Amiodarone, of course I responded with a resounding "YES!" and he laughed and told me to stop giving it to her. We are supposed to keep what is left just in case but she does not need to take it anymore. It will take at least a month for it to run out of her system completely and could take up to 2 weeks before we will truly know if she is done with it. He says that occasional SVT episodes while off the Amiodarone, as long as they are short and she is coming out of them mostly on her own, are a good thing. It will teach her heart that it doesn't need the Amiodarone anymore and hopefully help it to not depend on it anymore if it needs that help. And NO BLOOD DRAW today (see Side Effects)!!! We were so happy to just leave the exam room and be gone instead of heading down to the dreaded lab :o).
The EP Cardiologist also talked about taking her off of the Propanolol sometime in the next 6 months O_O. He smiled and told me he completely understood when I told him "I'm more than fine with taking her off of the Amiodarone, I know she'll do great, but the day you actually are serious about taking her off of the Propanolol I'm going to be scared to death and may try to talk you out of it." He said the parents who's child was in SVT 30 minutes to a day tops and never deal with it again are always a lot more eager to get rid of the medications than the parents, like us, who had to go through weeks in the hospital trying to get their child to stay out of SVT for at least a few hours/days. He told me he understood my fears of ending up right back where we started, which really isn't my fear, I know that if she isn't ready to be taken off the Propanolol we won't end up in the hospital I'll just be on the phone with him getting the OK to start giving it to her again and she'll be fine once it's back in her system. It's the fear of her having SVT period that makes me hesitate, I really don't want her going into it at all and knowing that the Propanolol is what is keeping her out of it makes me very hesitant. But it is exciting to hear him talk about trying to wean her in the next 6 months after having him tell us that she will not outgrow the PJRT and that she will end up taking the Propanolol until she can have the Catheter Ablation at 45-65 pounds.
We have some great parties planned to celebrate Miss K's first birthday :o). She is going to feel quite spoiled. Tomorrow she will officially be a year old and we will have a small cake with her grandparents from both sides and a few really great friends who adore her. This coming weekend we will have a HUGE birthday bash to really celebrate her birthday, and her big brother's who's birthday is in a mere 2 weeks, this party will be with my whole family. And in 2 weeks we will have another HUGE birthday bash with Daddy's family to celebrate both Miss K's first birthday and her big brother's 3rd birthday yet again :o).
Just a little look back on how far we have come with Miss K:
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| August 8, 2011. Just mere minutes after birth. Those purple little feet and hands make me so sad. |
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| About an hour after birth once they figured out why her coloring was off, now she's nice and pink though looking sad with all that stuff on her :o(. |
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| Almost 24 hours old, still nice and pink and doing well :o). |
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| 6 days old and day 2 at home and doing great! |
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| 7 days old, hours after being admitted to PCMC. |
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| One of the first days in PICU at PCMC. |
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| PICU |
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| Home? You mean this isn't home? And I get to see this place called "home" tonight?!? |
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| Day 4 home from PCMC and nearly 1 month old. |
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| 2 months old. |
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| 3 months |
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| Always smiling at 4 months |
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| 5 months, it's amazing how most of the time blogger will turn my photos for me but then just once it doesn't and I can't fix it. |
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| 6 months |
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| 7 months, her famous cheesy toothless grin. |
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| 8 months, one of my favorite smiles :o). |
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| Our sweet 9 month old |
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| Quite an energetic 10 month old |
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| 11 months, nearly 12 months. Sorry, the pics end here since August has barely begun and all my photos are on the camera and not accessible right now. |
8.06.2012
Missed a Dose of Propanolol again :o(
Yesterday, Sunday, was a day out of the norm for us. We were out of town visiting family all day and really none of us felt very good, probably due to the heat and also due to lack of sleep for some of us. My phone that I depend on for telling me it's time for Miss K's medication had also died. I don't realize how much I depend on that thing for Miss K until I don't have it lol.
Daddy, Big Brother, Miss K and I got home from visiting around 8:30pm and went straight to bedtime routine. It was during this time that I realized I didn't remember giving Miss K her afternoon dose of Propanolol. I thought really hard about it and within minutes I knew for sure I hadn't given it to her. So after a bit of deliberation I decided to give it to her right then, by this time it was almost 9:00pm. I was worried about breaking our great SVT free streak we've been on, I'm so proud of her for not having any breakthrough episodes in so long! So after working some numbers in my head I decided that if I got myself and Miss K up at 3:00am and gave her another dose it would hopefully counteract her missed dose earlier the day before. And of course we will pick right back up on the normal routine today as though nothing ever happened.
The 3:00am wake up went amazingly well. I worried that I'd have to wake her up to give it to her and then maybe wouldn't be able to get her back to sleep without some time and patience but when I went into her room I decided to try giving it to her while she slept. It worked like a charm :o). She swallowed each amount I put in her mouth and didn't even really move or fuss about it. I left her room having given her a complete dose and she was still sound asleep.
Now here's to hoping it works and we don't see any SVT in the next few days. You can bet I'll be checking her a few times a day for a bit just to make sure. Hopefully I'm not back on here reporting breakthrough episodes.
Tomorrow, Tuesday, Miss K has an appointment with her EP Cardiologist. This is the day he plans to take her off of the Amiodarone. I'll update with a new post the first chance I get! Until then...have a wonderful week everyone!
Daddy, Big Brother, Miss K and I got home from visiting around 8:30pm and went straight to bedtime routine. It was during this time that I realized I didn't remember giving Miss K her afternoon dose of Propanolol. I thought really hard about it and within minutes I knew for sure I hadn't given it to her. So after a bit of deliberation I decided to give it to her right then, by this time it was almost 9:00pm. I was worried about breaking our great SVT free streak we've been on, I'm so proud of her for not having any breakthrough episodes in so long! So after working some numbers in my head I decided that if I got myself and Miss K up at 3:00am and gave her another dose it would hopefully counteract her missed dose earlier the day before. And of course we will pick right back up on the normal routine today as though nothing ever happened.
The 3:00am wake up went amazingly well. I worried that I'd have to wake her up to give it to her and then maybe wouldn't be able to get her back to sleep without some time and patience but when I went into her room I decided to try giving it to her while she slept. It worked like a charm :o). She swallowed each amount I put in her mouth and didn't even really move or fuss about it. I left her room having given her a complete dose and she was still sound asleep.
Now here's to hoping it works and we don't see any SVT in the next few days. You can bet I'll be checking her a few times a day for a bit just to make sure. Hopefully I'm not back on here reporting breakthrough episodes.
Tomorrow, Tuesday, Miss K has an appointment with her EP Cardiologist. This is the day he plans to take her off of the Amiodarone. I'll update with a new post the first chance I get! Until then...have a wonderful week everyone!
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