Arnie took Olivia to the marathon RSV prevention drug trial appointment on Monday, October 24.  Here’s how it went:

Arnie arrived around 2pm.  Before they did anything, Renee put a numbing cream on Olivia’s hand to help numb the area before the blood draw. Olivia spent a lot of time attempting to take off the tape but was unsucessful.  45 minutes or so were spent going over the consent form.  Arnie felt it could have gone quicker had Olivia been a bit less demanding but she’s 15 months so it’s to be expected.

Her exam showed that she weighed 21 lbs, 9 oz and her oxygen sats were 82%.  Although her lungs sounded quite clear, because she’s been nursing a cold for a week or longer, they chose to do an RSV test on her.  They sprayed saline in her nostrils and then sucked a bunch of junk out to be tested.  Olivia was not too pleased with that part of the appointment.  They noticed that Olivia’s right ear seemed a bit red, as if she had a minor ear infection.

After the RSV test came back negative, Renee was able to get the blood draw done on the first try! I believe that’s a first for Olivia who normally gets poked multiple times before they get a “good” vein.

She received both shots at the same time (one in each leg).  She cried for a minute and then was fine.  They kept an eye on her for a bit after to make sure she was fine before sending them on their way around 6pm!

I thought Arnie would be crabby for having been there all day but he said Renee and Dr. Wolkoff made it pleasant for both him and Olivia. Olivia got TWO new toys! A blue carebear that has a bell/rattle in it and a driving console toy. Both new right out of the box.

They both said she is HIGHLY intelligent because of her precociousness and her ability to do things most children her age couldn’t do. Renee had used her keys to open a cabinet in the room. Olivia reached for the keys so Renee gave them to her. Olivia walked right over to the cabinet and attempted to use the keys to open it! She also was using Renee’s photo album (attached to her keys) as if it were a phone - putting it up to her ear and saying “hi”.  They were also impressed that Olivia can maneuver her sippy cup into the holder on the side of the diaper bag.

All in all it went extremely well.

Renee called me today (10/26) to check on Olivia.  She again commented on how intelligent she was. She asked how Olivia did that night and since. I told her that Olivia had a rough night on Monday evening (for Olivia anyway).  She had a rough time going to bed and so we gave her some tylenol assuming her legs might be sore from the shots. Then Olivia woke up around 2AM and was super fussy. She normally sleeps straight through. It took a few sips of milk, a diaper change, a dose of tylenol and some cuddles and hugs from Mommy to get her back to sleep (with a blanket).

Our next appointment will be Tuesday, November 22 at 8AM.  This time I’ll get to take her

Now we don’t need to worry about Olivia even thinking about becoming pregnant for many, many years. However, we have been told that single ventricle patients are discouraged from getting pregnant because of the risks associated with their hearts.

I came across this on one of the message boards I post at:

Anaesthesia
Volume 60 Issue 11 Page 1137 - November 2005
doi:10.1111/j.1365-2044.2005.04334.x

CASE REPORT
Caesarean section following the Fontan procedure: two different deliveries and
different anaesthetic choices in the same patient L. Eid1, Y. Ginosar2, U.
Elchalal3, A. Pollak4 and C. F. Weiniger5

Summary

The Fontan procedure is performed for patients with a hypoplastic right
ventricle, and pregnancies following this palliative surgery are likely to
increase. We present a parturient with the Fontan physiology who successfully
underwent two consecutive caesarean deliveries; the first under general
anaesthesia for emergency surgery and the second under regional anaesthesia for
elective surgery. We suggest that pregnancy and delivery do not typically
adversely affect maternal cardiac status in these patients. Attention must be
paid, however, to fetal loss, prematurity, growth retardation and associated
cardiac congenital malformations for which insufficient data exist in the
literature in this patient population.

Here is what I found in the medical literature last time I searched this topic
(a few years ago):

The largest, most often cited study of pregnancy in Fontans was published in
1996, looking at 33 pregnancies in 21 single ventricle mommies. There were
13 miscarriages, 5 abortions (10 or 15 years ago, these women were often
counselled that pregnancy put their own life in danger) and 15 live births,
ranging from 28 weeks gestation to full term. No maternal mortality, one
complication (arrythmia). The big difference between these patients and
our current "crop" of Fontans, is that most of them had their Fontans as
teenagers or young adults, so they lived with cyanosis for many years before
getting fixed.

A more recent article (2001) reports 4 "successful" pregnancies in 3 Fontan
patients. The babies were all premature (26-35 weeks), there were some maternal
complications (arrhythmia, ventricular dysfunction, and fluid build up) but all
were medically managed - no mortality.

So, bottom line..... Cautious Optimism! I expect in 20-30 years, Pregnancy in
Fontans will be much more common place and not so scary. By then we will figure
out how to optimize the outcome for mom and baby.

So with medical advances, Olivia’s chances of becoming a mom herself are very good!