What is it about this time of year???

Well here it is that time of year and Sweet Pea just couldn't resist having an episode. So it was just about bedtime last night and the kids were playing upstairs. When we called them downstairs apparently Sweet Pea wasn't going fast enough for Little Man so he kind of plowed her down the last few steps and she took a tumble. Of course there were a great many tears shed, a swollen and bleeding lip and a strange desire to check her heart rate. I listened to her by way of ear on chest and I could hear both parts of the beat but it sounded kind of "funny". So I grabbed the stethoscope and again I could hear both parts but it just sounded "funny". Then we grab the handy dandy pulseox we have laying in her drawer "just in case" and hook her up...159, 160, 158 no problem things are fine. Just as I go to unhook her she jumps...259, 258, 240, 256...so we begin the process of trying to convert her ourselves all while dialing the EP. We tried to get her plug her nose and swollaw (not easy with an almost 3 year old), I take her potty as I'm also trying to ring the dr. on the phone and she's still high. He suggests the ice to face the trick and Daddy had thankfully been coming with those freezer packs you have on hand for boo boo's and we smother her with those for a brief time. We're not sure if it was the potty trick or the ice pack trick but she converted and all was right with the world. Her EP said she is at the very bottom for dosing on the Atenolol and he doesn't want to move the dose. He feels this was just a freak break through episode due to the trauma of the fall and just keep an eye on her which we of course did like a hawk. Will the fun ever end??? What is it about this time of year?

Long overdue update...

As you can see, it's been eons since I last updated but that's a good thing not a bad thing really. Well we were hoping that Sweet Pea had outgrown her episodes all together but no such luck. Monday night just before bed she was messing around and tumbled off the arm of the couch. I picked her up and she felt like she was running kind of fast but I listened and I swear I could hear both parts of the beat and of course she'd be fast I'm sure the tumble scared her. So then we did bath and I was rocking her reading her stories when she moved and my hand was on her chest and sure enough. My heart just sank because I knew that feeling all too well. So I called Daddy to get the stethoscope and she was fast. Luckily we now have a little pulse oximeter so we put it on her toe and she was at 242. We called Daddy's dad to come over since Little Man was already in bed and we didn't want to disturb him and then off to the hospital downtown we go. The hospital is right across from her cardiologist so the on-call cardio was on the floor which was great. They got the iv in on the second try which was great and in a matter of minutes they worked their magic, gave two doses of the adenosine and her heart came back to normal. We stayed for an hour for observation and then they sent us on our merry way. We've up'd her dose of Atenolol from 15mg to 20mg and she goes for a holter just to make sure the new dose is going well on the 13th. Then we leave for a trip back to MN to see all our family and friends the 15th. It's been crazy to say the least.

I will say, I was hoping to have some more outward signs of SVT now that she's gotten older but there weren't any, I mean NONE. She talked and laughed and smiled and ate crackers and sipped her sippy and watched a movie in the car on the way to the hospital. I mean I'm thankful that she tolerates the episodes so well but scared too that she may have other episodes and we don't know. I don't know, just something I may talk to the EP about when we have our next appointment. Anyways, until later, hopefully MUCH later!

The delta wave is back...

We had Sweet Pea’s appointment at the Mayo today to talk next steps. The delta wave is back on her EKG so since it went dormant and reappeared the specialist said it's very unlikely she will outgrow this on her own, he made a special note to say sometimes they surprise us. So I'm ready to move on from the dream that she will outgrow it and on to the living with it until she can have an ablation. He said by the looks of her EKG it also appears her extra pathway is on the left side of heart which solidifies the fact that it's way too dangerous to ablate before her 4th birthday. He said because of the likely location of the extra pathway they have to insert the catheter between the left and right side of the heart, there's a greater risk for piercing one of the lobes of the heart so they need to make sure she's as big and strong as possible for the procedure. They took blood today as usual (it was not an easy stick this time either so that sucked!) and based on the level in her blood the specialist is going to calculate a new mg/kilo ration to base her dose changes on. She was 17lbs 15oz and 26 3/4 inches long today, we'll see what these numbers are at the pediatrician's office on Thursday, she has her 9 month check-up then.

Another trip to the ER

Well unfortunately we ended in the ER with Sweet Pea on Monday night, she had another episode and needed to be converted. So I guess the WPW went concealed instead of resolving. We have a check up at the Mayo on the 19th and we'll talk new game plan for her. For now we up'd her meds to match her weight again and hopefully that'll keep the episodes at bay. It's been so long since she had one that I forgot how stressful it can be! The hard part is that she doesn't really tell us she's in SVT because she was still smiling and Little Man was making her laugh all the way to the hospital. The only sign was that was kind of clingy and didn't eat much on Monday. So much for her telling us when she's in it when she gets older! I tell ya, she's a trooper that one! That's it for now, will write more later!

Update and Sickies

Well it's been awhile since I've done an update to say we've been busy is an understatement. Everyone in our house has been sick, Sweet Pea had pneumonia and then Little Man got sick and was sick for two weeks and then it was my turn and I'm still recovering.

To update on Sweet Pea just before she had her pneumonia I had heard the skip in her heartbeat come back, I hadn't heard that since my non-stress tests 3 weeks before I had her. So naturally I was kind of concerned and called the cardiologist, he up'd her dose of propranolol to 10mg every 8 hours since she was only 1 pound from her next dose increase anyways. Then she got pneumonia shortly after which she ran a 103 fever for 4 days and freaked me out, I don't think I've checked her heart rate so much since her episodes first started in February! But we survived that and she's up to par now.

We had our check-up with the EP last Monday and got some great news! First of all they did a sedated echo, the first since her fetal echo unless they did one the first stay in the hospital I didn't know about and everything still looked great. It was nice having her sedated because they did the EKG and blood draw while she was asleep which was nice because the lady doing the blood draw was an idiot! She finally called in two other nurses and they got it first time. It makes me mad that they poke her so many times before admitting they can't do it! Anyways, we met with the EP and he said they no longer see the delta wave on her EKG meaning one of two things, either the extra pathway has stopped conducting electricity or the WPW has become concealed. So we are cautiously optimistic that the extra pathway no longer conducts electricity meaning her WPW has resolved on it's own. We are going to not up her dose at all and reassess at 9 months when we will try to wean her off the propranolol. I'm scared to death of all this because it's been great not having any episodes for months now, almost like she's a normal baby. :) Anyways, that's our good news I hope, guess we wait and see what the next few months brings.
Daddy, Mommy, Little Man and Sweet Pea

Two Month Mayo Follow-up

Well we had Sweet Pea’s 2 month follow-up at the Mayo today (can't believe it's been more than 2 months since her last episode!) Everything went great and the doctor said she's growing great and doing great so we'll just keep following this plan. :) He said we may try to wean her off the meds at 6 to 9 months to see how she does. If she doesn't have an episode then great and we'll just let her keeping growing big and strong for the surgery, if she does have an episode then we'll obviously go back on the meds. It's scary to think of her off her meds but I know it's best since the meds themselves can bring other nasty side effects. So we go back to the Mayo at 6 months to see how things are going and we only have to do weight checks every 6 weeks which is also great. :)

We also had Little Man checked for WPW and he thankfully does not have it so we are grateful to God for that blessing. Anyways, it's nice to not have anything exciting to put out here. I hope everyone is doing well and we wish you all the best.
Love,
Daddy, Mommy, Little Man and Sweet Pea

Weight Check

Sweet Pea was in for a quick weight check and she was 12lbs 13oz. Not too much new and exciting to talk about which is GREAT. We have her follow-up at the Mayo next Friday and I can't wait to see what happens.