12.19.2012

Daddy has Influenza :o(

It's been a long 3 days for this Momma!  I.am.exhausted.  All I can do at this point is pray I can stay healthy through this!

Big Brother got a bad cold over the weekend, he never fevered but had a very bad, though inconsistent, cough and bad congestion and runny nose.  Sadly this cold resulted in a possible ear infection, I took him into the Pediatrician just to be sure he didn't have something really nasty that Miss K might get when we found his ear was starting to show signs of infection :o(.  On the good side it did get Big Brother on Amoxacillin, as much as I hate medicating my children for any reason I really don't wish to have one suffering during Christmas or worse end up in Urgent/After Hours care away from home.  Putting Big Brother on Amoxacillin now, even though he doesn't have an infection yet, will help us through the holidays.  Usually the Pediatrician would have had me watch him close for a week and schedule a follow up for next week to make sure the ear did not turn into an infected sight but our Pediatrician is all awesomeness and insisted he did not want us in Urgent care with an ear infection on Christmas :o).

Worse...Daddy came home feeling quite sick Monday evening.  He spent the night with severe chills that literally shook our bed all night long, and he coughed all night long and vomited and complained of muscle aches, a headache, and a sore throat.  Tuesday he was up and gone before any of us got up, he had to take a 2 hour trip to see a job sight.  I hoped this meant he would be just fine but I was beyond wrong.  He came home from the trip hours before quitting time and curled up on the couch to die.  I sent him to the after hours clinic to see what he had, we have to keep Miss K healthy if we can!  The Dr. there told him it was definitely Viral and she was quite positive it is Influenza, even though all of us got the Flu shot back in October :o(.  So the Dr. took a nose culture and sent it in to be tested promising to call him this morning and let him know what the results were.  He spent all Tuesday afternoon, evening and night on the couch with chills and a fever and commenced with the coughing, nose blowing, congestion, and vomiting...and added Diarrhea to the symptoms.  It's amazing how one virus can cause every symptom in the book to happen all at once!  This morning found Daddy still on the couch, way too sick to go in to work.  We never heard from the Dr. all day about his test results so this evening Daddy called the clinic and asked, they told him they'd call back in a bit...we waited 2 hours and called again to finally hear that he does indeed have Influenza :o(.  And the Dr. that saw him was not on call tonight so he couldn't talk to her, she promised to prescribe Tamaflu for the rest of us in the house to protect us from his virus but because she wasn't in the clinic tonight we have to wait until morning to get that taken care of.  I have no confidence this will happen so if we haven't heard back from her by 9:00am I will be calling my Obstetrician and asking him if he can prescribe Tamaflu for me and then I will also be calling our Pediatrician in hopes of him being able to prescribe it for both kids, to heck with the after hours clinic Dr.!

Miss K woke up running a high fever of 101 this morning :o(.  She was miserable all day long with a constant fever that I have not been able to keep below 99.9.  She also has congestion, though not as bad as Big Brother or Daddy yet, and her nose is running like a faucet, she has a cough as well.  We can see in her eyes that she does not feel well at all.  And my poor baby girl slept all day long today, I think she was awake maybe 4 hours total today.  I felt so bad when we couldn't let her fall asleep when she wanted to for bedtime, she had to stay awake until we were in the clear to give her her Propanolol and Digoxin, poor baby kept trying to fall asleep sitting up in the middle of the floor :o(.  On the good side I was able to get 1/2 a container of Pedialyte in her today, and a tiny bit of water and some milk :o).  And she IS eating, she ate every meal today, even porked out on dinner like she was half starved.  Hopefully she wakes up feeling better in the morning, and hopefully I can get tons of liquids in her tomorrow as well.  Another plus is that she has not had SVT today :o), praying with everything I have that she doesn't have any tomorrow or the next day either!  Daddy took the prayers one step further and called our Home Teachers and asked if they could come give Miss K a Priesthood blessing.  They came late tonight and gave her a wonderful blessing :o), also made Daddy feel so bad that he is too sick to do this for her himself :o(.

I have made no less than 4 trips to the grocery store in 2 days.  Every time I think we have everything we need to take care of everyone we find I am wrong and I am sent out once again...tonight Daddy needed Pepto Bismal badly, and we could have used another bottle of Ibuprophine for Miss K but I have had enough of the store for a bit and refused to leave the house yet again.  Daddy will suffer, but he'll live I am sure and we have just enough Ibuprophine to make it through tomorrow morning so I don't feel bad.

I have been spraying Lysol on every surface for 3 days now, including any pillows and the couch every time Daddy touches them.  I literally mean every surface has been sprayed multiple times.  I also have had hand sanitizer sitting on the dining table all week, I use it every time I touch one of the sickies or something they have touched.  I also require Daddy and Big Brother use it every time they touch anywhere on their face and after they use the restroom and, of course, after they touch Miss K and anything she has touched.  I have become the sanitizer Natzi!  But I refuse to get this illness, I am 32 weeks pregnant and I have a household to run, there is no way I can afford getting as sick as they have all been.  It's just too bad I couldn't stop the kids from sharing their toys and germs, poor Miss K still ended up getting sick even with everything I have done :o(.

I think after all this is said and done I will need a vacation...alone.  "I need", "I want", "I don't feel good", "I hurt"...all phrases I have heard constantly for 3 days now from 2 kids AND a husband.  It get's tiring real fast.  Not to mention the lack of sleep I have to endure through it all and no time to sit down and take care of myself for a minute.  I may end up getting sick just because I'm being ran to my whits end!

12.17.2012

It's been quiet with Miss K :o)

We've been having a great past few weeks!  I hope I don't jinx it, *knock on wood*!

I really feel the Digoxin is working :o).

With the baby coming in just 7 weeks we decided we needed a trial run with Grandma and Grandpa to prepare them and Miss K for the 3-4 day stay at their house after the birth of the baby.  This very paranoid and nervous mama left her sweet baby girl in the hands of Grandma and Grandpa for a whole night this past weekend.  I admit, I ended up worrying and missing the kids a lot less than I thought I would!  The time with just Daddy and I was so quiet and badly needed.  But I did call Grandma just before bedtime to remind her to give Miss K her Propanolol and Digoxin and then I called again first thing in the morning to make sure she got them again.  That was my main concern was the medications being forgotten, of course I also worried a bit about an SVT episode but that worry wasn't too great since she's been doing so good lately.  Turns out both kids did wonderful with my parents :o).  We will have another sleep over in January for a second trial run, I'm hoping to have a Pulse Ox device by then, or at least by the time the baby comes, so that I won't worry so much.

Big Brother ended up getting sick this past weekend :o(.  Our first illness since early spring, I can't believe we've made it this long staying healthy and strong!  But now, just a week before Christmas, Big Brother is very congested, has a runny nose and a nasty inconsistent cough.  So far he has only been a bit warm, not really getting a temperature high enough to be considered a fever thank heavens!  I am working as hard as I can to keep Miss K from getting his cold.  But I do feel confident that as long as the cold doesn't come with a fever Miss K will do fine with it heart wise.  So now we wait and see, see if I can keep her healthy by some miracle, and see if Big Brother makes it through fever free, and then of course see if Miss K can make it through fever free if she does end up getting it.

Here's to hoping I won't be back posting anything negative for a long while yet!

Praying for a quiet and enjoyable Christmas for everyone :o).

11.30.2012

Newborn Heart Defect Screen Awareness Day

I had big plans to post something new about today all day long to get the word out there but with 2 busy kids this was put on the back burner lol.  So, since we're already 1/2 way through the day I'll stick to just one post.

This is a quick video about Newborn Pulse Ox screening.  If you or someone you know is expecting a baby please watch and share this!  It could potentially save a little one's life.  Pulse Ox screening is very simple, very non-invasive, and very quick.  There is no reason NOT to do this for our babies.

I don't remember if I've mentioned here that we are expecting our third baby in February.  Yes, quite a shock for us!  Our little family of 4 is growing to 5 in just a few short months!  I have done tons of research and after having 2 babies already I know what I want and what I expect at the birth of this third precious one.  One thing is certain:  I WILL BE ASKING...NO, DEMANDING...THE NEWBORN NURSERY PUT A PULSE OXIMETER ON THIS NEW LITTLE ONE WITHIN 24 HOURS OF BIRTH.  I don't expect to deliver another heart baby, this one should be perfectly healthy and fine like it's big brother but you absolutely can never be positively sure about this.  I am terrified of taking a new baby home without knowing that the Pulse Ox test is perfect.

Please watch this video :o), save a baby's life :o).

11.20.2012

HaPpY DaNcE!!!!

Miss K had a hard weekend.  She had a high fever for 3 days and was just miserable but had no other symptoms, we were clueless as to what she was fighting.  And as always, the fever caused SVT...twice.  We made it 2 weeks without SVT and we were so happy!  And then it ended with 2 episodes in 2 days caused by a fever.  I wasn't worried, didn't think I'd even count these episodes and certainly didn't plan on calling the EP Cardiologist to tell him about them.  But Saturday night Miss K had a suspicious lump appear on her leg, where she had recently gotten a vaccination shot.  I wasn't sure if it was her Chicken Pox Vaccine or the MMR Vaccine but seeing this made me quite sure that was the source of her fever for whatever reason.  We waited and watched Miss K through Saturday night and all day Sunday.  She happened to wake up Sunday morning fever free and feeling great!  But the lump was still there, bright red and suspicious looking.  Monday was much the same as Sunday but I decided to call her Pediatrician anyway, they got us in to see the physicians assistant early in the morning.  The PA was a bit concerned about the lump and the fever but when I told her about the SVT she grew the most concerned and opted to go chat with our pediatrician about what to do.  It turns out the fever and the red lump on Miss K's leg were related, it was a perfectly normal reaction to the MMR Vaccine and nothing to worry about.  But the pediatrician was very concerned about the SVT episodes.  He said that clearly the Digoxin was not working and that this weekend was a good trial run to let us know sooner, rather than later, that Miss K needed to be back on the Amiodarone ASAP before she caught a nasty virus.  Apparently there are a few really nasty cold and flu viruses going around town and he's seen way too many cases with extremely high fevers and horrible symptoms.  He was worried about Miss K dealing with actual symptoms of a virus as well as a fever and SVT on top of it all and predicted finding her hospitalized because of complications.  He ordered me to call the EP Cardiologist that day and tell him about our weekend.

So I worried.  And I called the EP Cardiologist as soon as we got home.  I also cried and stressed.  I was certain Miss K would be fine and that SVT with a fever was just her normal.  Something we can't control. Period.  But the pediatricians reaction had me doubting my instincts.

It took 2 days for the EP Cardiologist to get back with me.  He finally called me himself thank heavens.  His reaction:  Miss K is fine.  The Digoxin is working in his opinion, it's a great sign that we made it 2 weeks SVT free after such a long stretch of weekly SVT episodes.  The fever induced SVT means nothing to him.  He said it's to be expected with a PJRT child.  He did not need to be reminded that while on the Amiodarone Miss K was having SVT with fevers.  He feels that no matter what medication we have her on she will still have SVT with a fever and it's not something we can control at all.  He did mention that putting her on the Amiodarone would help to better control the SVT but he doesn't feel it's necessary, the risks of being on it far outweigh the risks of not being on it.

I cannot even begin to describe my feelings while I spoke to this wonderful man!  I instantly teared up hearing that he knew Miss K was fine.  It was such a relief to be told Miss K will not be hospitalized any time soon and that the Digoxin is more than likely working just fine.

I admit...I did a happy dance...a rather embarrassing happy dance ;o).  I'm glad I was all alone to have my moment of celebration so as to avoid being laughed lol :o).

Here's to a long weekend with family and feasting, worry free!  I hope everyone has a wonderful Thanksgiving full of family, friends and happiness!

11.13.2012

Miss K Update

Miss K's EP Cardiologist was in the Cath Lab all day the day I called to speak with him about Miss K's more frequent SVT episodes so he never called back.  I called the next morning to make sure we hadn't been forgotten and within an hour he returned my phone call.

And the verdict is...

Miss K is now taking 1.2 mL Digoxin twice daily along with her Propanolol 3.2 mL 3 times daily.

The conversation was a bit discouraging and brought a lot of questions to mind.

The EP Cardiologist is hoping the Digoxin will help make her SVT less frequent and easier to manage but he isn't guaranteeing it, he actually doesn't think it's going to do much for her but he's willing to try it as it's the easiest option to try first.

IF the Digoxin doesn't work, and we will know within a week if it's going to, he is going to schedule to have Miss K hospitalized at Primary Children's Medical Center ASAP.  She will be hospitalized for observation only as they start her back on the Amiodarone at a very low dose, most likely back to the small dose she was on when we stopped giving it to her.  The reason for hospitalization is to keep her on constant EKG monitoring to make sure she doesn't react to the Amiodarone any differently than she was when she was on it before.  They have to make sure her heart rate stays at a steady and safe pace without any extra beats or anything dangerous.

I have cried over this for a few days.  I'm trying to be hopeful the Digoxin will work, I really want it to work.  But the EP Cardiologist was so sure it isn't going to work that he has discouraged me.

The thought of hospitalizing Miss K for any amount of time is terrifying and a bit depressing for me.  He estimated it could take 3-5 days before she can be released...with Miss K's track record I am scared it will actually end up being 1-2 weeks or more.  I mean seriously, how can I be hopeful that 3-5 days is going to be it when we were told 24 hours was all she needed a year ago and we ended up there for nearly 4 weeks?!?

The bills alone are terrifying to me.  If it needs to be done it needs to happen before the end of the year so we can take advantage of our insurance deductible being maxed out, this would help immensely.  But doing it before the end of the year puts us at risk of ending up staying in the hospital through the holidays, very much not something I'm not willing to risk.

Having a 3 year old son at home and being 7 months pregnant is also terrifying.  I really can't imagine sitting in a hospital room for days, or weeks, with my baby while my 3 year old is being taken care of by someone besides me and while I'm trying to deal with pregnancy hormones.  We have a lot of family who can help us with our son, the issue we'll be dealing with is that Big Brother is in Preschool two days a week and I am paying more than we can afford to have him there, we cannot have him skip days as they are not refundable.  Whomever gets to watch him for the duration of Miss K's stay is going to need to take time off work and away from their own families to come sit with him at our home so they can take him to school and try to keep up some kind of regular routine so he won't have a flip out moment about having Mommy and Miss K gone together again.

And the most terrifying thing for me is sitting in a cramped hospital room with my wiggly, very busy, very mischiveous, 15 month old baby girl.  There is no way they are going to get her to leave an IV in, and we know they will require an IV for her stay.  They will not get her to stay in a bed for any amount of time other than sleeping.  She is the most dramatic baby when it comes to eating and I can't imagine trying to get her to eat there in the hospital.  All I can see is stress.  And tears.

We can use all the prayers we can get that we can avoid the hospitalization option!!!!  I have days I feel good about the Digoxin and other days I cry thinking "it's not going to work just because we're due for another trial in our lives and this is it."

On a bit of a lighter note.  Daddy and I have been in search of a good, reliable Pulse Ox device to purchase.  We have not had much trouble finding them but we have had trouble finding a good price that fits our budget.  The ones that are most affordable are not as reliable with pediatric patients as we need it to be.  It took us over a year to finally decide to break down and purchase one.  We were not in a hurry before since Miss K was so young and we were not inclined to leave her with anyone for any amount of time because I was breastfeeding her and also her SVT episodes were very infrequent, averaging one about every 3 months or more.  But now that she is giving us SVT troubles again, and she's old enough for us to be more prone to leaving her, and Daddy and I have not had enough date nights or time away from the kids lately, as well as the fact that baby #3 is on it's way come February and we WILL be leaving Miss K and Big Brother with family during the delivery and for nearly a week afterwards (I have c-section deliveries so the hospital stay is at least 3 days, usually 4), we are needing something to help us be more comfortable leaving Miss K with someone for more than an hour or two.  Having a Pulse Ox in the diaper bag with clear instructions on how and when to use it and what to do if her heart rate is too high is likely to make Daddy and I at least a bit more comfortable with the thought of leaving Miss K with a sitter.  A stethoscope is great but only when the person using it knows what Miss K's heart sounds like when in SVT and it's not a sound that's easy enough to describe.  Getting Miss K to sit and be quiet for a whole minute in order to count out the beats is nearly impossible so we are not willing to just rely on a stethoscope for family and sitters watching her.

11.08.2012

Miss K is 15 Months

Time sure flies...I wish we could hit pause for just a bit and keep them little a bit longer than they tend to stay little on their own :o(.

Miss K is doing well.  She had her 15 month Well baby exam today with her Pediatrician.  She now weighs 18 pounds and is 30 inches tall, seems they are a lot more accurate with these measurements than the Cardiologist is ;o).  She is perfectly healthy and developing right on track in every way.

Her Pediatrician was concerned about the frequent SVT episodes.  I have been putting off calling the Cardiologist hoping that they will stop with time but she is still having about one a week.  The Pediatrician told me to call today.  He's worried that the longer we let her heart go into SVT regularly the harder it is going to get to control it with medication, he's afraid her heart is going to get in the habit of SVT episodes :o(.

So I put a call into the Cardiologist as soon as we got home.  I'm waiting to see what he says to the nurse, so far I've talked to her and let her know what's going on and she has yet to call me back, I will update this post as soon as I know what we're going to be doing.  Hopefully we just up the Propanolol a bit more first before he suggests anything more aggressive.  Stay tuned!

10.28.2012

Breakthrough SVT Log...

I have a feeling there's going to be a lot more SVT in the near future.  Rather than post and re-post about each and every one of them I'm just going to add them here as they happen, no worries I'll date them :o), this IS a journal for me as much as an update for all of you so keeping track is very important to me.

Friday, October 26:

Miss K had another SVT episode :o(.  We have not missed any Propanolol doses and she has been getting the new dose of 3.2 mL 3 times a day for a little more than a week.  The SVT was, yet again, unexplained :o(.  We're not sure how long she was in it before I caught it, she had been spending the afternoon/evening with Daddy while I worked my day at the boutique.  Daddy doesn't know how to tell when Miss K is in SVT and he never catches it on his own.  I don't know how to explain how I know she's in SVT, she doesn't show any real physical signs that are for sure "I'm in SVT" signs.  She just seems off to me, a bit out of sorts.  And she is normally crying for no apparent reason, just wining and moping around carrying her blanket.  She also does this when she just plain doesn't feel well but somehow my "mommy instincts" can pick out whether she is in SVT or not when acting like this.  When I got home I could hear Miss K crying in her room while getting a diaper change, Daddy came out with her completely baffled and told me she was refusing to eat her dinner and that her diaper was clean and dry, he didn't know what was wrong.  I took her from him and just knew to check her heart.  She was in SVT and she actually sat still long enough for me to count it out, it was over 200 BPM.  Luckily the physical maneuver that makes her bear down worked on the first try and then she was fine, tired but fine.  This is turning into a once a week occurrence lately :o(.

Sunday, November 4:

Miss K had another SVT episode IN CHURCH!  And this time I was paying attention and figured something out...temper tantrums can cause SVT!  She was being insistent on playing with a Crayola marker but she only wanted to play with it, not color and she kept pulling the lid off and drawing on her pretty little dress so I took it away.  She tried to throw a huge tantrum and got so worked up it just threw her into SVT.  I knew she was in it when she went from near tantrum screaming to painful crying :o(.  I carried her out into the Mother's room and checked to make sure I was correct in my thinking she was in SVT, once confirmed I did the "bear down" physical maneuver, it took 2 tries this time :o( I hope that's not a sign that it may stop working in the future :o(.  She was fine the rest of church, other than being extremely tired because of the time change, in her mind it was nap time but we still had an hour left of meetings so she really gave us a hard time.  Looking back on the last SVT in church episode I realized that it was the same situation as today when she went into SVT, she was upset over having something taken away and started to throw a huge tantrum when her screaming turned to cries of pain.

Friday, November 16:

Miss K has been taking 1.2 mL Digoxin twice a day with 3.2 mL Propanolol 3 times a day for 4 days now.  Her EP Cardiologist told us if there was going to be any change in the frequency and duration of her SVT episodes we would notice within 3 days or so, a week at most.  I don't think I'm going to call in tonight's SVT episode though.  Miss K started running a low fever last night and woke up this morning with no change, it stayed around 99 degrees Fahrenheit all morning but this afternoon it went up to just over 100 :o(.  Miss K is well known for having SVT with high fevers so I am attributing tonight's episode to that.  She cried "that cry" as she went into it and then she was just fussy and a bit whiny, she wasn't doing anything to cause the SVT, it just happened out of nowhere.  We let her stay in it for about 15-20 minutes before making her bear down to stop the SVT.  Daddy got to try it this time without my help or instruction and was very pleased he was able to get her out of the SVT without me :o).  I really hope this episode was truly caused by her fever.  I know she shouldn't be having any at all, fever or not, but how can we think a high fever isn't going to cause SVT with a PJRT child when everyone's heart rate is quite a bit faster than normal when they are fevering?  We're still on the lookout for more episodes though, we check her constantly throughout the day.  I'm happy to say we made it over 2 weeks without SVT this time and with her running a fever it just makes it more believable that the new medication "cocktail" may actually be working.

Saturday, November 17:

I'm sitting at the Boutique, where I put in occasional shifts, when my phone rings...it's Daddy calling to tell me Miss K is running a fever again, about 102 degrees Fahrenheit :o(.  We have no idea why she's running a fever these past two days, why is it kids do this on the weekends when they can't see their doctor?  So anyway, he then continues to tell me that she went down for nap just after 1:00pm and he went in to get her up at 4:00pm, she didn't want to get up and was trying to go back to sleep so he checked her heart to find she was in SVT :o(.  He doesn't know if she went into it before, during or waking up from her nap so we have no idea how long she was in SVT before he made her bear down to break the episode :o(.  This makes me nervous.  I'm still sure it's the fever causing the SVT, we DID have 3 episodes in one day the last time she had a fever so 1 episode every day that she's fevering isn't much of a surprise to me.  But now I'm trying to remain calm as I try to decide if I need to call the EP Cardiologist on Monday and let him know what's going on.  I know he'll want to know that she's having SVT but I don't know if he'll consider these episodes something to worry about or not since she's running a high fever.  I just wish we knew WHY she's running a fever, teeth are always an option but I don't think that's very likely right now as she's already gotten all 4 new molars, I think she's done with teeth for at least a few months.  Here's to praying I'm not back on here any time soon to report more :o(.  Keep praying with us that we can keep  her out of the hospital!

Thursday, November 22:

Yes, Thanksgiving day :o(.  Actually it was in the evening.  We were at my parents for the holiday.  Miss K decided to throw a temper tantrum for her Grandma and it caused SVT.  It was good timing in a sense, but also bad seeing as it's been less than 5 days since her last episode.  So Grandma got to put her ear to Miss K's chest and hear what SVT sounds like in her, the first time in over a year since Grandma or Grandpa has heard her heart beating too fast.  I also got to show Grandma and Grandpa how to help Miss K bear down and break the SVT episode.  The next time I speak to the EP Cardiologist I'll ask him what he thinks about her temper tantrums causing SVT.  It's not all the time, just certain tantrums she throws when she's extremely ticked off about something, this doesn't happen very often, actually so far it's only happened in church and now at Grandma's lol.

Tuesday, November 27:

Another one :o(.  And we have no idea why.  We also have no idea when she went into it.  I have had a very busy and distracted day, one of those days where the kids do whatever they want and make a huge mess of the house and I don't even notice, as long as they are playing and happy and not bothering me or hurting anything.  So sometime this morning during the chaos of the kids happily terrorizing the house and me being distracted with my work Miss K went into SVT.  Daddy came home for lunch around 12:30, he wasn't home long when Miss K started wining and begging to be held, but still wining even while being held.  We thought she was just hungry since she hadn't eaten much for breakfast and it had been 3 hours since then but when I'd ask her if she wanted to eat she'd just wine some more instead of signing "eat" like she usually does.  I put my ear to her chest and heard the quick beats of SVT :o(.  She came out of it instantly with the "bear down" physical maneuver.  I'm concerned since it's only been 5 days since her last episode, they seem to be happening more and more frequently.  Her EP cardiologist wasn't concerned the last time we spoke but I feel he just might be concerned if I called again...I'm not sure if we should wait a bit longer or if we should see if she just needs a dosing adjustment.  I'll keep everyone updated on what we end up deciding.  Until then hopefully I won't be back on this thread posting another episode anytime soon :o(.

Saturday, December 22:

We very nearly made it 1 month episode free!  But this illness Miss K has ruined it for us.  She did so well for the first 3 days but suddenly couldn't handle it any longer.  This morning she had another SVT episode, her fever is pretty low, low enough to be nearly non-existent.  Yesterday she started pulling on her ears and crying, I hoped it was not an ear infection, I was way too sick to really pay much attention to her behavior through the day and didn't get her in to see the Pediatrician :o(.  This morning with the SVT episode and the tugging on her ears combined I decided she needed to be seen, ear infections tend to cause SVT with her as easily as a fever does.  So as of right now Daddy has Miss K over at the After Hours Clinic getting her checked out.  I hate that I am too sick to take her myself.  I had to write a note listing everything Daddy needs to mention to the Doctor while there so that he doesn't forget anything important and so that she can be treated correctly for her situation.  I only hope it all goes well!  One of my biggest worries is that her heart rate is most likely a lot higher than they are used to seeing in a child her age so I told Daddy over and over as he went out the door that he needed to tell them that as long as her heart rate is below 200 BPM she is fine and does not need the Emergency Room, I hope they listen to him!  I will update on what the Doctor says when Daddy and Miss K get back...

*Update:  Daddy and Miss K came back with a prescription for Amoxicillin for Miss K.  Her ears were quite a bit red, not enough for them to normally treat immediately but with Christmas in a few days they are treating her so that we don't end up in the Emergency Room with her in lots of ear pain.  The doctor also told Daddy that Miss K is quite dehydrated :o(.  We were doing well getting her to drink but, having this flu myself I know, water doesn't taste all that great so she is refusing it.  I got pedialyte but she only drank half the container and got tired of that taste, we offered her gatorade and she didn't like it :o(.  So after going to the doctor and finding she is indeed dehydrated we broke out the apple juice, we're watering it down so she's getting at least some water in her.  Knowing she's dehydrated enough for a doctor to make note of it lets us know that's why she had SVT this morning, dehydration can cause it as well.  So now our drug cocktail is a very long list daily for the next 10 days!  Propanolol 3x a day, Digoxin 2x a day, Tamaflu 2x a day, Amoxicillin 2x a day, and Tylenolol and Ibuprophine as needed as well as Little Remedies Honey Cough Elixer as needed.  Poor kid is stuck taking medications all day long!  Though after a long afternoon nap and having started the Amoxicillin as soon as she got home she seems to be on the mend already :o).

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.

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.

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.

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.

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!

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.

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.


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:
August 8, 2011.  Just mere minutes after birth.  Those purple little feet and hands make me so sad.
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(.

Almost 24 hours old, still nice and pink and doing well :o).
6 days old and day 2 at home and doing great!
7 days old, hours after being admitted to PCMC.

One of the first days in PICU at PCMC.
PICU

Home?  You mean this isn't home?  And I get to see this place called "home" tonight?!?

Day 4 home from PCMC and nearly 1 month old.

2 months old.

3 months

Always smiling at 4 months

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.

6 months


7 months, her famous cheesy toothless grin.

8 months, one of my favorite smiles :o).

Our sweet 9 month old

Quite an energetic 10 month old

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!

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(.

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/

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.

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...