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.
9.26.2012
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!
7.02.2012
Miss K's Eye Appointment
Miss K saw the Ophthalmologist for a follow up today. It was a short and sweet visit thank heavens, especially after our horrible start to the afternoon.
I am ashamed to admit I had a "worst mom of the year" moment today :o(. When getting out of the truck to head inside Primary Children's Medical Center for Miss K's eye appointment I somehow hit the "lock" button on my keys and left them on the seat, I was looking for my sling to carry her in and in my frustration of not being able to find it I shut the door her seat is next to and went around to open the other door only to find that it was locked, and so were the rest of the doors :o(. Miss K was still inside buckled in her carseat and the keys were on the back seat next to her :o(. I called Daddy in a panic asking him what I should do. He had me try to open the back sliding window but it was latched shut and I was not strong enough to force it open, I got in the tool box and found a screwdriver to try forcing the window open but still couldn't get it. We also have a slim jim in the tool box for such occasions but I have no idea how to use it so I wasn't willing to take more time working on getting in there on my own. It was about 110 degrees outside and I could see Miss K was already getting flushed from the heat :o(. I was parked on the far side of the building and it was quite the run, as fast as I could go, into the hospital to the security desk. When I got inside I told the security lady that I had locked my baby and my keys in the truck, she didn't even hesitate as she got on her radio and yelled "there's a baby locked in a truck outside, get your slim jim and get your butts out there NOW!" I told her I was sorry but I couldn't wait inside so I described our truck and where I was parked and ran back outside as fast as I could so I could watch Miss K from the windows and keep an eye on her. I waited for about 3 minutes (though it seemed like FOREVER) and the 3 security guards, including the lady from the desk, came running to our rescue. It took them less than 1 minute to get the doors unlocked for me. I was so grateful, the tears I held back through it all almost fell at my relief. Luckily Miss K was only in that hot truck about 10 minutes before we got her out and she didn't start to panic and cry until just before security arrived to help, of course she was extremely happy to be rescued and turned out to be just fine, a bit red in the face from heat but otherwise fine.
Now on to the rest of the afternoon. As soon as Miss K was rescued we ran in to her eye appointment. The 1-2 hour appointment that I had anticipated turned into less than 30 minutes as they got Miss K back almost immediately and chose not to dilate her eyes since they had done that last time. The Doctor was impressed with her yet again and reports that she is doing great and here eyes look perfect :o). He doesn't wish to see her again unless taking her off the Amiodarone doesn't work and she ends up back on it. I, of course, reassured him that this wouldn't happen and told him that as much as we liked and appreciated him we would be glad to not ever be back :o), he agreed. (See Side Effects)
Then we had to head to the Pharmacy to pick up Miss K's medications. Amazingly there was not a wait there either. The pharmacist was still not able to explain why we're only getting 28 days out of a 30 day supply, they are baffled and couldn't tell me anything other than "hopefully this time it will stretch to 30 days like it should." I'm not happy with them but there's really nothing I can do about it. We left the pharmacy to sit in the hallway and give Miss K her Amiodarone since she hadn't had it in 2 1/2 days and I was instructed by her EP Cardiologist to get her dosed ASAP today when I picked up the medication.
I was amazed to be back home so quickly, we left home at 2:00pm and arrived back into town at 4:30pm. It was a great thing though since I am still shaken up about locking Miss K in the truck in the heat :o(.
I am ashamed to admit I had a "worst mom of the year" moment today :o(. When getting out of the truck to head inside Primary Children's Medical Center for Miss K's eye appointment I somehow hit the "lock" button on my keys and left them on the seat, I was looking for my sling to carry her in and in my frustration of not being able to find it I shut the door her seat is next to and went around to open the other door only to find that it was locked, and so were the rest of the doors :o(. Miss K was still inside buckled in her carseat and the keys were on the back seat next to her :o(. I called Daddy in a panic asking him what I should do. He had me try to open the back sliding window but it was latched shut and I was not strong enough to force it open, I got in the tool box and found a screwdriver to try forcing the window open but still couldn't get it. We also have a slim jim in the tool box for such occasions but I have no idea how to use it so I wasn't willing to take more time working on getting in there on my own. It was about 110 degrees outside and I could see Miss K was already getting flushed from the heat :o(. I was parked on the far side of the building and it was quite the run, as fast as I could go, into the hospital to the security desk. When I got inside I told the security lady that I had locked my baby and my keys in the truck, she didn't even hesitate as she got on her radio and yelled "there's a baby locked in a truck outside, get your slim jim and get your butts out there NOW!" I told her I was sorry but I couldn't wait inside so I described our truck and where I was parked and ran back outside as fast as I could so I could watch Miss K from the windows and keep an eye on her. I waited for about 3 minutes (though it seemed like FOREVER) and the 3 security guards, including the lady from the desk, came running to our rescue. It took them less than 1 minute to get the doors unlocked for me. I was so grateful, the tears I held back through it all almost fell at my relief. Luckily Miss K was only in that hot truck about 10 minutes before we got her out and she didn't start to panic and cry until just before security arrived to help, of course she was extremely happy to be rescued and turned out to be just fine, a bit red in the face from heat but otherwise fine.
Now on to the rest of the afternoon. As soon as Miss K was rescued we ran in to her eye appointment. The 1-2 hour appointment that I had anticipated turned into less than 30 minutes as they got Miss K back almost immediately and chose not to dilate her eyes since they had done that last time. The Doctor was impressed with her yet again and reports that she is doing great and here eyes look perfect :o). He doesn't wish to see her again unless taking her off the Amiodarone doesn't work and she ends up back on it. I, of course, reassured him that this wouldn't happen and told him that as much as we liked and appreciated him we would be glad to not ever be back :o), he agreed. (See Side Effects)
Then we had to head to the Pharmacy to pick up Miss K's medications. Amazingly there was not a wait there either. The pharmacist was still not able to explain why we're only getting 28 days out of a 30 day supply, they are baffled and couldn't tell me anything other than "hopefully this time it will stretch to 30 days like it should." I'm not happy with them but there's really nothing I can do about it. We left the pharmacy to sit in the hallway and give Miss K her Amiodarone since she hadn't had it in 2 1/2 days and I was instructed by her EP Cardiologist to get her dosed ASAP today when I picked up the medication.
I was amazed to be back home so quickly, we left home at 2:00pm and arrived back into town at 4:30pm. It was a great thing though since I am still shaken up about locking Miss K in the truck in the heat :o(.
6.26.2012
Primary Children's Medical Center Blog
Miss K made it on Primary Children's Medical Center's blog for their Story Lines section! Her story is being spotlighted for others to read, share and relate :o). Head on over and check it out!
http://primarychildrenshospitalblog.org/2012/06/22/story-lines-little-miss-kimber/
http://primarychildrenshospitalblog.org/2012/06/22/story-lines-little-miss-kimber/
6.25.2012
Cora's Story
I was just directed to this blog by some other Congenital Heart Defect mom's on Facebook that I follow. It is heartbreaking. There are no other words for it. I hope this story on her blog is enough to make everyone see how common CHD's are, and how deadly they can be if not detected. Please read it, it's short and only takes a few minutes to know her whole story. It's important.
I have quite a few friends and family having babies in the next few months and I am constantly praying that they will educate themselves and know the signs of a CHD, I'm praying they will keep in mind that CHD's are not always detected before birth as they should be.
I also have quite a few friends and family who know our story and still don't believe it's such a big deal. I'm sad by how many of these people we know and love don't understand just how serious Miss K's CHD is. I try my hardest to help them understand that if Miss K had not been born with her heart in SVT from the beginning we would not have known she had PJRT and we never would have watched for the signs and symptoms, even knowing she had SVT at birth if I hadn't of listened to my instincts, if I had sat by and said "she's just being a sleepy newborn", if I had put off taking Miss K to see a Doctor even just a few hours longer she would not be here with us now. I cannot imagine life without Miss K. Every day I think about Miss K's first week of life. Every day I read at least one new story (new to me anyway) about a CHD child. Every day I am amazed at how clueless I was about CHD's before Miss K.
This could happen to anyone. It does happen to 1 in 100 families. It is common. It can be deadly. Please educate yourselves. Be prepared. Know the signs and symptoms. And please, please, please don't trust that all your prenatal ultrasounds were right and that your baby is perfect in every way. It is common to miss a CHD in utero, it's also quite common to miss a CHD after birth. Too many babies are sent home with an undetected CHD.
I love the ideas Cora's mom has posted on her blog about educating yourself about CHD's during your pregnancy. Know all about them and study them as much as you will study SIDS and everything else you will study before your baby comes. My favorite thing she mentions is to request, yes seriously REQUEST, that the medical staff test your baby with a Pulse Ox 24 hours after birth, you don't need a reason and you don't need to make up excuses. It's an easy test, all they do is put a little monitor on your baby's foot and watch the numbers. If, IF, there is anything wrong with your baby's heart this should show some sign. I for one plan to ask for this when we have our next baby, we WILL be prepared and ready for a CHD.
Ok, here is Cora's Story. Be prepared, you will cry, especially if you are a parent or parent to be.
I have quite a few friends and family having babies in the next few months and I am constantly praying that they will educate themselves and know the signs of a CHD, I'm praying they will keep in mind that CHD's are not always detected before birth as they should be.
I also have quite a few friends and family who know our story and still don't believe it's such a big deal. I'm sad by how many of these people we know and love don't understand just how serious Miss K's CHD is. I try my hardest to help them understand that if Miss K had not been born with her heart in SVT from the beginning we would not have known she had PJRT and we never would have watched for the signs and symptoms, even knowing she had SVT at birth if I hadn't of listened to my instincts, if I had sat by and said "she's just being a sleepy newborn", if I had put off taking Miss K to see a Doctor even just a few hours longer she would not be here with us now. I cannot imagine life without Miss K. Every day I think about Miss K's first week of life. Every day I read at least one new story (new to me anyway) about a CHD child. Every day I am amazed at how clueless I was about CHD's before Miss K.
This could happen to anyone. It does happen to 1 in 100 families. It is common. It can be deadly. Please educate yourselves. Be prepared. Know the signs and symptoms. And please, please, please don't trust that all your prenatal ultrasounds were right and that your baby is perfect in every way. It is common to miss a CHD in utero, it's also quite common to miss a CHD after birth. Too many babies are sent home with an undetected CHD.
I love the ideas Cora's mom has posted on her blog about educating yourself about CHD's during your pregnancy. Know all about them and study them as much as you will study SIDS and everything else you will study before your baby comes. My favorite thing she mentions is to request, yes seriously REQUEST, that the medical staff test your baby with a Pulse Ox 24 hours after birth, you don't need a reason and you don't need to make up excuses. It's an easy test, all they do is put a little monitor on your baby's foot and watch the numbers. If, IF, there is anything wrong with your baby's heart this should show some sign. I for one plan to ask for this when we have our next baby, we WILL be prepared and ready for a CHD.
Ok, here is Cora's Story. Be prepared, you will cry, especially if you are a parent or parent to be.
Medications, medications, medications...
That seems to be the story of our life. "Has (Miss K) had her Amiodarone today?" is always asked by Daddy making sure I am on track and me helping Daddy to remember when he's being Mr. Mom for the day. "Did you remember to give (Miss K) her Propanolol?" another question asked by me or Daddy at the end of the day. "Don't forget to give (Miss K) her Amiodarone at ____ oclock and her Propanolol at _____oclock." is what I have to tell Daddy and/or any other sitter (if there ever is a sitter since we never leave her alone with anyone) when I'm not around to make sure it's done myself. Whenever I need to be away from the kids during a medication administering time I am constantly sending text messages to the adult in charge of my baby making sure she was given her medication, that it was the correct dose, that she took it well, and that everything else seems to be going OK.
This week has been a medication issue as I've found that for the 3rd month in a row we are 2 days short on her Amiodarone...what gives? How is it I'm paying for a 30 day supply and the bottle says there is enough for 30 days but at 28 days we are completely out? Go figure. I called PCMC's pharmacy and asked them these questions, they couldn't tell me anything. Their records show that they are giving us a 30 day supply for 6ML's a day so they don't understand it either. I was told I need to bring the bottle in with me so they can see what's going on, seriously how is an empty medication bottle going to help them solve this puzzle? Oh well...the point is we will be out of Amiodarone this Thursday instead of Saturday.
Which leads me to our next problem. Miss K has an eye appointment on July 2nd, that's this coming Monday. But she's going to run out of her Amiodarone on Thursday. This means 2 trips down to PCMC within 4 days of each other :o(. We really can't afford the fuel to do this with our F-350 diesel engine truck, the only vehicle we have.
So I called the EP Cardiologist today and asked what I could do to not need to drive down twice...amazingly he was very understanding about it. I thought maybe we could just give her a bit less than the normal dose all week to make the rest of it stretch until Monday but instead he suggested we use it all up, every drop, giving her the exact prescribed dose and then when she runs out he said to just skip the next few doses until we can make it to the pharmacy. But I was given strict instructions to get right to the pharmacy on Monday, fill it and give her a dose immediately. I am so relieved to have that figured out. I am kind of leery skipping 2-3 doses but I'll do it since the Cardiologist suggested it. He was OK with it since he's taking her off of it in a month :o).
On a side note, we had another SVT episode this evening :o(. Miss K was acting kind of out of sorts and was reddish in the face so I asked Daddy to check her heart and sure enough she was in SVT. She came out of it quickly though, which is great :o). It seems she may be having more and more episodes per month though :o(, I sure hope this does not mean taking her off the Amiodarone will be an epic fail...
This week has been a medication issue as I've found that for the 3rd month in a row we are 2 days short on her Amiodarone...what gives? How is it I'm paying for a 30 day supply and the bottle says there is enough for 30 days but at 28 days we are completely out? Go figure. I called PCMC's pharmacy and asked them these questions, they couldn't tell me anything. Their records show that they are giving us a 30 day supply for 6ML's a day so they don't understand it either. I was told I need to bring the bottle in with me so they can see what's going on, seriously how is an empty medication bottle going to help them solve this puzzle? Oh well...the point is we will be out of Amiodarone this Thursday instead of Saturday.
Which leads me to our next problem. Miss K has an eye appointment on July 2nd, that's this coming Monday. But she's going to run out of her Amiodarone on Thursday. This means 2 trips down to PCMC within 4 days of each other :o(. We really can't afford the fuel to do this with our F-350 diesel engine truck, the only vehicle we have.
So I called the EP Cardiologist today and asked what I could do to not need to drive down twice...amazingly he was very understanding about it. I thought maybe we could just give her a bit less than the normal dose all week to make the rest of it stretch until Monday but instead he suggested we use it all up, every drop, giving her the exact prescribed dose and then when she runs out he said to just skip the next few doses until we can make it to the pharmacy. But I was given strict instructions to get right to the pharmacy on Monday, fill it and give her a dose immediately. I am so relieved to have that figured out. I am kind of leery skipping 2-3 doses but I'll do it since the Cardiologist suggested it. He was OK with it since he's taking her off of it in a month :o).
On a side note, we had another SVT episode this evening :o(. Miss K was acting kind of out of sorts and was reddish in the face so I asked Daddy to check her heart and sure enough she was in SVT. She came out of it quickly though, which is great :o). It seems she may be having more and more episodes per month though :o(, I sure hope this does not mean taking her off the Amiodarone will be an epic fail...
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