November 15, 2019
  • 11:37 pm Fall 2018 Pictures
  • 1:37 pm Halloween Photo Drop
  • 4:35 pm Heartiversary Celebration
  • 4:32 pm Fontan Clinical Studies
  • 4:18 pm Tomorrow is Holden’s Heartiversary

Holden’s post-op appointment went really well! Amazingly, he was completely calm for the EKG and blood pressure measurement. I can’t say the same for the X-ray, but we swiftly got through it. His chest X-ray looks good, and so he has gone from Lasix 3x a day to 1x. This is water pill that he’s been on 2x daily since he was 2 weeks old. I’m not a doctor, but my understanding is that it’s to keep fluid off of his lungs. Once he sees his cardiologist at the end of the month, he’ll be off it completely. 🙌🏼

He’s still on heart medication, which hopefully after his next surgery he’ll be able to stop it; and he’s on baby aspirin, which he will be on for his entire life. The aspirin will fend off congestive heart failure.

Being that he’s looking so good, he shouldn’t have to see the surgeons for another year and a half. However, we’ll continue to frequently see the cardiologist (probably quarterly).

One piece of information we haven’t shared yet is that between now and his next surgery Holden’s oxygen saturation will be in the range of 75-85%. Most people are at 100%. Before surgery, Holden’s was in the mid to upper 90s. There’s a good reason for this temporary change, but I’m having a mental fog as to how to explain it, so I won’t. The main thing to know is that sometimes Holden’s lips and extremities may be blue. I’ve already seen it. So now you know, and hopefully you won’t freak out when you see it.

Thank you all for your prayers for today and continued prayers! I should also add that Holden’s speech has improved since the surgery, which was unexpected. We definitely thought he’d have setbacks from surgery, but instead he’s soaring.

PS: thank you to those of you who sent pacifiers. Today I gave the extra unopened ones to the PICU for other babies who do not like the hospital-provided ones.



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