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 :).

8 comments:

  1. Can you tell me what an episode of act looks like in a 2-3 year old. My son was born with svt. We did the meds for a year until he had heart surgery to repair tetrology. Since the surgery they took us off propranolol and he has not had an episode since! Yet this past weekend he we pale as can be and later down on the floor. Not 5 minutes later he was up and moving again. The doctors think it might have been svt but I am just trying to figure out how a child with svt might act of this occurred. Thanks

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    1. I'm sorry, I'm just now seeing this! Miss K has not had SVT since she was 16 months old so I really do not know how a 2-3 year old would act in SVT :/

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  2. Finding your blog was amazing. My two week old was diagnosed with PJRT in utero and was born four weeks early after an emergency c section. She is doing extremely well and we were even able to go home for two days before they found out she had flecanide toxicity. We are back in the hospital now and they are saying that the next step is to try Amioderone. These meds scare me especially after all yhis craziness with the flecanide. My sister and oldest daughter both have other forms of SVT but my little Ryli has the worst of the three by far. PJRT has been such a nightmare and it scares me to bring her home not knowing what's going on inside her little body. Since being back in the cardiac icu she sleeps all day, won't nurse, and has an unpredictable heart rate. For the two days we were at home she was alert, feeding very well, and acting like a normal newborn. It's so frustrating. I wish it was more common, not knowing anyone who has gone through this before makes it that much more difficult.

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  3. My daughters tachycardia was found when I was 33 weeks pregnant. She was delivered by c section at 36 weeks and is now almost 4 weeks old. We have been in the hospital since we found the SVT at 33 weeks. She as diagnosed with PJRT at birth. The doctors have been playing around with amiodorone, flecanide, and a few different beta blockers. Baby girl was doing well in flecanide and propanalol but ended up getting flecanide toxicity. With all of this stuff going on I am getting stressed out about returning to work. We are already hurting financially and I can't imagine leaving her side in the hospital (we live an hour and a half away) and if we end up going home I can't imagine letting someone else be I charge of these terrifyingly dangerous medications. I wasn't sure if you know of any financial assistance that would help me be able to stay home with her or if you can offer any words of support. This is by far the most frustrating thing I have ever dealt wit and my eight year old is ready for us to come home!

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  4. My daughters tachycardia was found when I was 33 weeks pregnant. She was delivered by c section at 36 weeks and is now almost 4 weeks old. We have been in the hospital since we found the SVT at 33 weeks. She as diagnosed with PJRT at birth. The doctors have been playing around with amiodorone, flecanide, and a few different beta blockers. Baby girl was doing well in flecanide and propanalol but ended up getting flecanide toxicity. With all of this stuff going on I am getting stressed out about returning to work. We are already hurting financially and I can't imagine leaving her side in the hospital (we live an hour and a half away) and if we end up going home I can't imagine letting someone else be I charge of these terrifyingly dangerous medications. I wasn't sure if you know of any financial assistance that would help me be able to stay home with her or if you can offer any words of support. This is by far the most frustrating thing I have ever dealt wit and my eight year old is ready for us to come home!

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  5. I'm sorry I'm just seeing this. We had baby #4 in May and it has thrown me for a loop! I hope things are looking better for you and your baby, I most especially hope you are all home now! I feel your pain here, our daughter was in a hospital nearly 2 hours from home for a month, at the time we had a 2 year old son. Because I was exclusively breastfeeding and she was eating and gaining weight very well they did not wish for me to leave her side so I was rooming in with my baby at the hospital that full month while my husband stayed at home and worked his job to keep the income coming in and our 2 year old stayed with his grandparents. It was heart breaking but we made it through with visits as often as possible. As for financial help, we applied for financial aid at the hospital for the bills there, and as I said my husband went to work daily, I don't work so we were not loosing any income on my end. Have you requested to join our Living with PJRT facebook group? I will go over and see if your name is there :). If you haven't tried joining you can click on the option at the top of this page "Living with PJRT" and it will take you to the facebook page.

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  6. I just found your blog and didn't finish reading all posts but did you do a cardiac catheter?

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    1. A catheter ablation was not suggested by our electrophysiology cardiologist before age 5, 40 pounds (15kg). She turns 5 this summer and is very close to the 40 lb park so we were just recently given the Ok to schedule an ablation in the near future. We are now waiting on finances and good timing to avoid time from school.

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