Long overdue update

So it’s been a while, a VERY LONG while. Life gets in the way and I can promise you when you don’t hear from us, it’s because there’s nothing but NORMALCY to report.

I’m not sure what happened to most of the links on this site, I will take a look when I have time (ha) to figure it out.

I’ve been reminded by my husband, my family, my CHILDREN (who are now old enough to read this blog and POST comments on it!). So here’s the very long, very overdue update.

Continue reading

Cardiology Appt

We had the pleasure of seeing Dr. Heller today.

Olivia weighed 25 lbs (dressed minus shoes) which is a 1lb, 5 oz gain since March!  She is now 32 1/2″ tall (1″ taller since March).

Her EKG came out great.  Her oxygen sats?  86%!!!!  She had an echo done and the leaking from her valve is much less than it was in March.

Due to Olivia’s growth spurt we increased her enalapril to 1.5ml 2 times a day.  I mentioned that we had goofed (twice) and gave her double her enalapril. She wasn’t worried because it is a low dose and it shows that we’re actually giving her the meds (I guess some patients aren’t as diligent?)

We briefly spoke about Olivia’s mysterious rash. She felt that Olivia *could* be allergic to Omnicef but didn’t feel it was necessary to send her to an allergist at this point.

We also discussed dental visits for Olivia. Dr. Heller felt it would be better for us to see a pediatric dentist for Olivia. She knows of a woman in West Hartford who is excellent and quite a few of her patients go there.  She feels it’s better to see someone who is used to the “high risk” kids. I will be calling this week to schedule a visit.

We go back in three months: September 7 at 8AM.

I did ask about the Fontan  – if we have at least another year and she said yes. I’m not looking forward to that…

Correspondence w/ Dr. Heller re: BP

After last week’s appointment, I emailed Dr. Heller regarding Olivia’s blood pressure reading and heart rate.  Here’s my email to her:

Dr. Heller,
I just wanted to update you on Olivia.

She saw Dr. Wolkoff and Lee Sullivan for our last Clinical Trial visit today (post – study visit, no shot).



Olivia’s blood pressure was MUCH better at 102 / 53(?) so the enalapril is definitely doing it’s job. However, her heart rate was 132 which is 12 beats higher than her normal rate. She was coloring at the time they checked her heart rate and she is fighting a cold / cough.

She lost a bit of weight since her last visit with them. If I compare the weight from her visit from you on 3/2 to today, she lost almost 8 oz (I’m not sure if she was weighed at your office dressed or undressed). Comparing the weight from our last clinical trial appointment on 2/23, she lost about 4 oz. She had a fever over the weekend and didn’t eat too much on Saturday, Sunday and Monday.


Should I be concerned about her heart rate increasing while her blood pressure dropped? And the weight loss – is that something to be concerned about?

Dr. Wolkoff recommended Olivia get one last synagis shot so Dr. Friedman and I are working together to get the ball rolling on that.

Thank you in advance for your response!
Tricia

She responded this morning:

Hi Trish – Sorry for the delayed response. I was basking in the florida sun :)

I’m not too concerned about the HR. It has been in the 130’s on several recent visits with me – which is fine in an awake toddler. What are you basing her “normal” HR on? The HR varies so much from minute to minute in little kids – I wouldn’t rely on one or 2 isolated readings.

Enalapril shouldn’t affect HR, in any case. Did they have an easier time getting the BP than I did? That is an OK reading, but I’d like to see it even lower (if the reading was reliable). Ideally, the top # should be 70’s to 90’s. We have room to go up on the dose, if her BP trends are on the high side. Maybe we can check BP more frequently?

This can be done by visiting nurse, or quick doctor visits. Let me know your thoughts. How is her appetite now? We’ll have to keep an eye on her weight. I’ll be back in the office Monday.
Take care

Cardiologist Appointment

Today we saw Dr. Heller for an appointment. Olivia was happy to show off of course! She weighed in at 23 lbs, 10 oz and was 31.5″ tall. Her oxygen levels were 81% and her EKG looked great. We couldn’t get her blood pressure reading but based on Arnie’s notes from last week’s RSV prevention appointment, it was a bit high. So we reviewed my notes from the past 5 months and realized that all the appointments showed a higher than “normal” reading.

Dr. Heller did an ultrasound. Everything looked great minus a bit of backflow in her valve so she decided to put her on enalapril which is a blood pressure med. She is on 1 ml 2 times a day.

Dr. Heller was pleased overall with Olivia’s growth and developmental progress. She gave us the green light to travel to Florida – we’ll be there from April 28 – May 6.

Our next appointment will be June 8 at 8AM.

Cardiologist Appointment

We had an appointment with Dr. Heller this morning.  Olivia weighed 18 lbs, 10 oz and was 28.25″ long. That puts her at the 50% for weight and the 75% for height!  Not too shabby!

Her oxygen level was 82 and her heart rate was in the 150s. Dr. Heller says she looks GREAT and she looks forward to seeing us as Olivia is doing so well.  Olivia showed off her chatting abilities to everyone.  We don’t go back until October!

Cardiologist appt.

Olivia looks “amazing”.  “If only all the babies could look this good”.

Olivia weighs 12 lbs, 6 oz and is 24″ long.

Her oxygen level:  86%!!!

The blood is flowing beautifully (“just right”) through her SVC – no blockage.

Dr. Friedman had been on Dr. Heller every day Olivia was in the hospital to ask if Olivia had gotten her synagis shot yet. It’s nice to know Dr. Friedman was thinking about her daily.

No need to go back until January 31 :)

Cardiologist Appointment

Olivia weighed in at 7lbs, 8.4 oz.

Her oxygen levels were a bit low for my liking. 68-72%. But Dr. Heller said Olivia has been known to bounce around with her oxygen levels so she’s not worried about it.

Dr. Heller did a ultrasound so Maddie, Arnie and I got a good view of Olivia’s heart. And we got to hear it :)

We had a chest xray done and her lungs are A-OK – so no more Lasix!

We go back in a month.