12.07.2016

Surgery Day 12-7-2016 Update #7

We're home!  Kimber ate and drank everything in sight happily.  Nothing held her back from leaving.  They came and did an EKG around 3:00.  The second the machine turned on I knew it was different, I have never, ever seen an EKG like it from Kimber.  It.Was.Perfect.  I cried, and asked for my own copy, the girl didn't understand at first, she kept saying "it's Ok!  It looks really, really good!" I explained that I knew that and that was why I was crying, I was just unbelievably happy.  We were released soon after that.
The next 2 days kimber has to take it easy, nothing over exerting.  Then for another 3 days she just has to refrain from sports and exercise (aka riding bikes, climbing, running).  None of this is for her heart, her heart is absolutely fine, it's just for her incision sites.
We see Dr. P for follow up in 8 weeks then he won't see us for a year, after that if she's doing well he's done with her!

Kimber came home to a Get Well card that her kindergarten class made and sent home with Big Brother.  It was so sweet and she was so excited.

Here are some fun pics from today.  Including the wonderful, perfect EKG.











Surgery Day 12-7-2016 Update #6

Kimber is doing really well.  She downed a slushy in less than 30 min and begged for more, she has been cleared for food and requested Ramen Noodles but the nurse won't let her have those while laying completely flat so she had to settle for Mac and Cheese, I hope she eats it better for them than she does at home.

She's on flat bed rest for another 3.5 hours, they'll do an EKG to check on things around 3 and then we should be going home around 4.  She's a fighter, and very stubborn, she wants to sit up so bad, we've had to forcefully lay her back down a few times.  The worry is bleeding too much from the entrance sites but luckily for her Dr. P was able to just use her veins and didn't need an artery to get to her pathways so the risk of bleeding is a bit less than it would have been.

Right now she is watching one of her favorite movies, The Hobbit, yes it's a love of hers, her bonding thing with Daddy, she is happy as can be at the moment.

Surgery Day 12-7-2016 Update #5

A little groggy and quite stubborn but she's drinking a lot already and asking for food, which is great!  She has to lie flat for 5 hours...less than 1 hour in and she's already fighting it, ugh.  But once we're out of PACU and on the floor we will pull out fingernail polish and make her very happy.

Surgery Day 12-7-2016 Update #4

She's done!  3 hours.  She for sure has PJRT, was very easy to go in and out of SVT and the SVT stopped immediately upon freezing the area, he froze 5 points, they are the blue spots on the picture below, which is an image of the right side of kimber's heart.  It's not likely the svt will come back, it's meant to be a permanent fix and if not we will know within a few short weeks.

We are now waiting for her to wake up in PACU and then we'll get to see her.  We will be here another 5 hours keeping her still to prevent bleeding.

Surgery Day 12-7-2016 Update #3

The nurse just called.  Kimber has been a sweetheart, cuddled the nurses and teased with them until she was put under and she said she went to sleep like a dream, the perfect patient.
They're still mapping her heart but as of right now she went right into SVT immediately and since has been in and out of SVT very quickly, which is a very good thing because without SVT the surgery can't happen.
Before surgery Dr. P explained that it's best for the pathway(s) to be all on the right side of the heart rather than the left and that he was hoping to freeze the pathway(s) rather than burn.  The nurse just reported that so far it seems all is indeed on the right side and he should be able to use the freeze method.
So far, so good!

Surgery Day 12-7-2016 Update #2

They just took my heart away.  It's so hard letting them carry your child off.
Projected time is 4 hours give or take. They'll call us with an update ever hour.
Dr. P is wonderful, he has watched our little girl grow from a newborn and treats her like his own little princess, I'm sure he'll take very good care of her.
They'll go into the right side if the heart first and hope the pathway(s) is there, if not they'll check the left, which is more difficult but doable.  He's hoping to freeze the pathway(s) but burning is also possible.  In about an hour they will be all prepped and done with the first step, an EP study that will hopefully show them where they need to be, then they should give us an update letting us know what they have found before they begin.
We're feeling your love and prayers, thank you :).



Surgery Day 12-7-2016 Update #1

Surgery is scheduled for 7:30am.  We were instructed to be here by 5:45am...not nice.  It's just over an hour drive so we had to get up at 4:00am.
Kimber woke up happy and excited.
It is now 6:15 and we're all registered, kimber and daddy are having a blast on Snap Chat, she is quite slap happy and full of energy.
We're being admitted right now.

12.02.2016

Cardiac (Catheter) Ablation

Well, we took the plunge and scheduled the ablation for the end of this year.

Shortly after the last update we started seeing high heart rates on Kimber's FitBit.  And then 3 times she told me "Feel my heart, it's bumping", all 3 times she was in SVT.  I'm not sure if she has been having episodes all along without us knowing or if this was a new thing, in the past many, many times Kimber came to me and asked me to feel her heart because it was "Bumping" but when I'd listen it was in normal rhythm so I thought she was just becoming aware of her heart beat, I mean surely she couldn't be having SVT because this kid had never, ever converted out of an episode on her own before so why would she now?  I'm second guessing that thinking now, I'm pretty sure she's been having episodes for at least the last 2 years but was converting pretty quickly, obviously before I listened to her heart.  The last 3 episodes that we, and the FitBit caught, were short, 5-15 minutes long, and she self converted without any vagal maneuvers, twice we were listening to her heart and heard it convert on its own.  The self conversion is amazing news!  But knowing this now brings new light to Kimber's claims that her heart was beating too fast in the past, all this time we've thought she was SVT free when she really wasn't.  Having so many episodes suddenly happening so frequently we called the EP who upped her medication doses for the first time in 4 years and pleaded with us to reconsider ablation sooner rather than later.  After much thought and prayer we decided now is the time so I called and got her scheduled for December 7, 2016.

Here is a screen shot of the FitBit app showing one of Kimber's spikes to SVT:

And since then we've been waiting.  Last night was the very last dose of heart medications for Kimber, after 5.5 years of heart medications Kimber is hopefully done forever.  Now, I say "hopefully" because:
a) the ablation could be unsuccessful and she could end up right back on the medications soon after.
b) even if the ablation is successful the SVT could come back later in life, most likely around puberty when hormones and the body starts to change.

We opted to slowly wean Kimber off the medications rather than suddenly stopping them, the EP didn't say which to do and the Pharmacist said it was up to us so we decided the slow wean was probably best since we'd heart stories of terrible withdraw issues in other kids who stopped suddenly.  I tell you what, the last week has been so, so hard on all of us!  Remember Kimber has been on these medications for years, since just a week old, it's all her body knows, so when we started lowering the doses her hormones and her body started to resist, it wasn't happy about it, and essentially didn't know what to do without the medications.  Kimber has had terrible mood swings, yes she's a 5 year old girl and they're pretty moody by nature, but this was worse and came on quite suddenly.  She has been terribly emotional, clingy, and had a hard time being separated from us.  One day I had to carry her kicking and screaming onto the bus and had to pry a monkey grip of a Kimber off of me forcefully, plop her down in a bus seat, and the driver and I had to have an older girl sit next to her and block her in so she wouldn't leave the seat and come after me, the bus left with a screaming little girl and left me crying on the side of the road.  Luckily the driver reported later that afternoon that Kimber stopped crying very soon after leaving the bus stop and giggled and had fun most of the ride to school.  This week as I walked Kimber to dance class she suddenly wrapped herself around my legs and begged me to carry her, I obliged only to have her monkey grip me again and refuse to leave my arms once in the dance room, a lot of coaxing, pulling and prying, and I was again leaving a screaming Kimber in someone else's care.  I won't mention the long days at home, let's just say it has been rough.  None of this is typical Kimber behavior and all suddenly started just a few days after we started weaning her off medications.  Hopefully it is short lived and we have our happy girl back soon!

It was bittersweet giving that last dose!  And funny enough this morning as Kimber left her bedroom I called her back, presumably to give her medications, I stopped for a beat as she walked into her room and asked "what mom?" and I smiled and said "nothing baby girl, just go get dressed".  It's so routine that I know it's going to take months, or more, to remember we don't do it anymore.

Here is a picture collage commemorating the last dose, I couldn't help it, we needed to document it as it's such an epic milestone.
I will keep this blog updated, this will be my communication to keep everyone in the loop on surgery day so check back here often on December 7-8th to keep yourself updated on Kimber's progress.

Prayers that they can successfully get Kimber to go into SVT in order to accomplish the surgery, that they will be able to ablate it all successfully, that Kimber will handle the surgery well and come out OK, that we can avoid any and all complications, and that recovery will go smoothly and quickly for her, would be greatly appreciated.  Oh, and maybe a little prayer for Mommy and Daddy as well ;).

8.29.2016

Past Due Update

I cannot believe it has been 18 months since my last update.  I am so sorry we have not been active here!  Life has just been so, so busy.  In May 2015 we added baby #4 and it really threw me off, I have not been able to do much other than care for my kids and work my jobs.

In May 2015, soon after bringing new Baby Brother home, my mom found a lump in Kimber's neck that concerned her, I kept an eye on it for a few days and realized it was growing, and quite fast.  I took her to the Dr., who happened to be the on call Dr. rather than her regular pediatrician, he told us there was nothing he could do for 2 weeks!  I did not feel comfortable with this so a few days later I called her regular pediatrician for a visit, he wasn't overly concerned either but he sent us in for an ultrasound on it, she was diagnosed as having a Thyroglossal duct cyst.  This is not dangerous and is seen in a large percentage of children.  These cysts can be left and watched for a long while until painful or very large, and it can take a long while to hit this point.  We opted to have Kimber's removed as soon as we could because she was claiming to be in pain from it and was not eating well.

In July 2015 Kimber went in for her Thyroglossal Duct Cyst surgery.  Everything went well.  It was discovered to be a rather large cyst that went further back than the ultrasound showed and proved to be a very good thing we had it removed when we did.  Kimber's heart handled the surgery very well!  We happened to get a very knowledgeable Anesthesiologist who had dealt with SVT patients in surgery before, as well as had patients go into SVT under her watch so she knew what to watch for and knew how to handle the situation, but like I said, Kimber did great.  It was a quick recovery.


Kimber's Spontaneous Hypothermia Migraines have continued to plague her.  She has had another 2 episodes since the last one noted on this blog.  She complains her head hurts a few days of the week and is still taking the migraine suppressant.  There is still nothing more we can do except hope she outgrows it soon.
This is an example of Kimber's temperature reading while in Spontaneous Hypothermia, this is one of her higher readings.

In the Fall of 2015 Kimber gave us a bit of an SVT scare.  She woke in the night with a very, very high fever and her heart rate was in the 170's, but it was not in her PJRT rhythm so we just watched and waited for the Motrin to kick in and bring the fever down.  Once her fever was under control her heart rate slowed to the 150's for the rest of the night and early morning when her fever broke her heart rate dropped back to normal range.  She spent the day quite under the weather but no SVT.  We took her to visit the Dr. when other symptoms became apparent, she was a new to us Dr. and she panicked and gave us a good lecture for not taking Kimber to the ER the night before with that heart rate but we assured her we felt she was fine, she still insisted we were in the wrong and actually made me feel like maybe we'd done something wrong so I called our EP who laughed and reassured us that our judgement was trustworthy and he felt as long as the heart rate came down with the fever reducers then she was fine and a visit to the ER was unnecessary.  He still didn't wish to see her until March, YAY!

We made it an entire year between the last updated Cardiology visit and the next one!  We saw the EP for a yearly, yes that's right YEARLY!, visit in March 2016.


At Kimber's March visit with the EP he explained that he didn't want to wean off of medications, he still could see the PJRT on her EKG, I tried to talk him into it but he wouldn't go for it at all.  Instead he said Kimber is ready for a catheter ablation, she finally hit the weight requirements and we are cleared to schedule it whenever we feel we can.  Talk about terrifying!  I've prayed for this day to come but I never thought it'd actually be here and now I'm scared to do it!  We want Kimber off the medications, so, so badly, especially since we are more likely lately to miss her afternoon dose than we ever have been, she misses the afternoon dose of Propranolol about 3-4 times a week because we're busy, we forgot to bring it with us, my alarm didn't go off or I didn't hear it, or my alarm did go off but I wasn't in a position to run and grab her and the Propranolol and I completely forget afterwards.  Her EP said it's not a very good thing that we miss doses but he said it is a sure sign it's time for an ablation, and he really laughed it off and said "let's get it scheduled so you don't need to worry about it anymore".
But here it is nearly September and I have not yet scheduled the surgery...
1.  Because I'm scared.  Yes that's the #1 reason and I know, it's ridiculous.  I just keep putting it off though.
2.  Because of the baby.  Some, maybe most, won't understand this.  Baby brother is 15 months old now, but he's still breastfeeding 5-6 times a day, I can't in good conscience leave him for an entire day without me, he's still not eating enough food or drinking enough from a cup to satisfy.  But I can't take him with me, a toddler in the OR waiting room, and then in recovery, would be disaster.
3.  Finances.  Enough said.

Kimber starts Kindergarten tomorrow!  *Sniff* I'm having a hard time with this.  We got a 504 plan for her (helps give exceptions for school, makes the teachers and staff aware that she has a health issue, etc.).  I have a detailed, written medical plan of action for the school nurse, front office/principal, teacher, district, and bus drivers, things like symptoms to watch for, how to care for her if she has an SVT or hypothermia episode, the fact that she cannot go long without food or drink because of her Propranolol, special instruction to try getting her into the lunchroom first thing for breakfast to stock up on some calories, allowing a snack and water bottle on the bus in the afternoon to get her home so she doesn't pass out from low blood sugar (breakfast at home will be at 7:00am, she won't get home for lunch until 12:00 or 12:30, that's 5+ hours between meals without these special allowances).  We saved up and bought a FitBit Charge HR for her after extensive research and finding an unbeatable deal on one, this will give me peace of mind knowing I can check her daily heart rate when she gets home and her teacher and aides can see her heart rate right there on her wrist all day, I'm working on getting it insured if possible in case it's lost or stolen.  Despite our constant worry about SVT my main concern is Kimber having a Hypothermia episode while at school.  It seems that is more likely than an SVT episode.  I keep having to tell myself I need to breath, everything's going to be OK.  I'm so happy she gets to go to school like she wants to but I'm really struggling with the thought of keeping her home with me.

2.12.2015

6 Month Cardiology Checkup

I can't believe it's already been 6 months since our last visit with the EP Cardiologist.  Time is sure flying.

Can you believe it was 2 YEARS in December since Miss K's last known SVT?!?  We didn't celebrate it yet, it's been way too crazy the last few months and we completely forgot :(, hoping to have a cake for her soon though :).

First off the appointment went very well.  Miss K climbed right up on the scale without complaint, even stood perfectly for her height measurement.  And when it came to getting the EKG done she completely shocked me!  Just last appointment, 6 months ago, she screamed and cried about having the "stickers" put on her and I had to hold her while we did the whole EKG.  Today I asked her if we could put the "stickers" on her chest and she said "yes!", she let me put her on the exam table without any complaint and she laid right down and lifted her shirt up.  She was so good, she held perfectly still for the EKG, she complained that the blood pressure cuff hurt her, which is not normal, but I think the nurse had it on a bit too tight, and she didn't like having the stickers taken off by us, she insisted on doing it herself and that was just fine, she pulled all 13 of them off all on her own without tears.
I even got to take a quick picture of Miss K today, something not likely to happen in the past :)

The EP Cardiologist came in and said everything on her charts looks great.  He listened to her heart and said she sounded wonderful.  He was very happy with her today.

Having 3 kids in the office together makes talking very hard so I didn't get to really ask a lot of info about Miss K but I did get a few things clarified.  The first thing he said was that she hadn't gained enough weight to worry about medication dosing, I told him we were going on 2.5 years on the same doses and just over 2 years SVT free and we both agreed this is a great sign and that there is no reason to change her medications.  My only regret is that I didn't get to ask him why we couldn't try lowering them, or even try dropping the Digoxin, he didn't even go the direction of mentioning it himself which makes me think the PJRT must still be showing it's ugly self on her EKG, but I didn't get to ask him if this was the case with all the chaos of my 3 kiddos running around the room :(.  I did get to ask him my main question.  I have been wondering about the Catheter Ablation with Miss K nearing age 4.  In the past he has mentioned she'd likely have one around age 5, we're so very close to that age and I couldn't stand not asking him about it a little more in depth.  So we talked about when and why to do one.  He said he has done them on kiddo's Miss K's tiny size but only in dire circumstances where it was deemed quite necessary.  That's just fine with me, I am most definitely not asking him to do one now.  He said he really wants her to weigh 15 kilograms (about 40 pounds) and be age 5 or older.  He actually mentioned that height is more a factor to look at than weight, so say if a 5 year old is not 40 pounds but she is at average height or taller for a 5 year old then an ablation would be more than OK to consider.  But Miss K is so teeny tiny, she's most definitely not going to be 40 pounds around age 5, and going off her current height it's very unlikely she'll be "average" at that age either, she's very short compared to her older brother when he was her age (i.e. when Big Brother was 3.5 years old he had to have a 4T size pant to accommodate his length otherwise he'd have "floods" or "high water jeans"...Miss K is age 3.5 and she is still in a 2T pant because 3T are WAY too long).  Doing an ablation on a teeny tiny child presents risks, mostly a huge risk of not getting a vessel or two ablated because they were too small to see, thus guaranteeing a return of the SVT episodes sooner or later (likely sooner), but if we wait until she's quite a bit bigger he'll be much more likely to successfully get every little vessel that is causing the SVT's and thus preventing further SVT episodes at all in her future.

So, we keep up with the medications as they are.  No plans for an ablation in the immediate future, the EP Cardiologist says around age 7 may be a better estimate for Miss K.

And the best news?!  He officially said "I don't want to see you for a year!", the first time he's ever said those words :).  We don't have to go back in 6 months :).  This is a huge step for Miss K, we've been waiting for him to say "don't come back for a year" rather than "come back in 6 months, unless you think she's doing OK then you can wait a year".  We're so happy to hear this :).