Friday, January 13, 2012

Cardiology update, Open-heart surgery, and Synagis shots

Josiah's cardiologist called this a.m.  He's reviewed, and re-reviewed, the results from last weeks echo cardiogram.  He's consulted with his Senior staff members, and they have reached a consensus.

Josiah has multiple ASD's.  Due to the enlargement on the right side of his heart, it is believed that there is more blood flowing between chambers than originally thought.  Unfortunately, this can lead to pulmonary hypertension.  For a person without Trisomy 21 (Down Syndrome) the damage could take a decade or more.  For someone with DS, the damage can occur within one year.  Josiah is three months old now.  They want to prevent his lungs from becoming damaged.  As our pediatrician told us, pulmonary hypertension is often irreversible.  Therefore, they have made the smartest decision to protect our little one.

Josiah will have open-heart surgery.

Next week, we will be bringing Josiah to Children's for a sedated echo cardiogram.  He will also have an xray of his chest done (perhaps this is to confirm the earlier suspicion of RSV, perhaps it's just to gain an image of his lungs).

The cardiologist put in a surgical request today.  We have been told that we will be hearing from the surgical clinic within 7-10 days.  Surgery will likely occur in 4-8 weeks.

Had that original VSD not been found, we would probably be more flooded with emotion now.  Mind you, we didn't know about the ASD's.  We had prepared, early on, that Josiah would need surgery within the first 6 months of life.  Believing the VSD had closed was a huge relief, but did not erase that initial preparation for what was to come.  I'm glad about that. 

You never want to be told that your baby needs open-heart surgery but the statistics are comforting.  This is considered an 'easy' operation with a high success and rapid recovery rate.  Josiah will likely be home within a few days of having surgery. 

I cannot speak highly enough about the support system we have, and have built.  Our pediatricians office called today stating they will putting in a request for Josiah to receive the Synagis shots for RSV.  We didn't have to ask....they simply took it upon themselves to initiate.  The following is information I copied from the website about Synagis.

Although the flu and flu shots get most of the attention in the fall and winter, parents of high risk children shouldn't forget to consider Synagis shots to prevent RSV infections through the winter RSV season.

While RSV, or the respiratory syncytial virus, may just cause a cold in older children, it can cause a serious and life threatening infection in younger high risk children. These children, including premature babies, can develop bronchiolitis, which is associated with inflammation in the lungs, wheezing and difficulty breathing. RSV can also cause croup, ear infections, and pneumonia.
Children who are considered high risk for RSV infections and who should get monthly Synagis shots during RSV season, which typically lasts from November through April, include:
1) Infants and children under age 2 years who have required treatment for chronic lung disease, such as oxygen, bronchodilators, diuretics, or steroids, within 6 months of the start of RSV season.
2) Infants born at or before 28 weeks gestation and who are less than 12 months old at the start of RSV season, which means that these preemies will need Synagis for at least one RSV season.
3) Infants born at 29 to before 32 weeks, 0 days gestation and who are less than 6 months old at the start of RSV season.
4) Infants born at 32 weeks, 0 day to 35 weeks gestation and who are less than 3 months old at the start of RSV season or who are born during RSV season and who have at least one of the following risk factors:
  • child care attendance (daycare)
  • has a siblings less than five years old
5) Certain children who are younger than 2 years with congenital heart disease, including congestive heart failure, pulmonary hypertension, and cyanotic heart disease.

6) Certain infants born before 35 weeks with congenital abnormalities of the airway or neuromuscular disease.

Where to Get Synagis

Because Synagis is so expensive, it is unlikely that you will be able to get your child's Synagis shots from your pediatrician. Instead, your pediatrician will probably refer you to a 'Synagis clinic' or a home health agency for the Synagis shots.

The NICU might also set up your child's Synagis shots before you leave the nursery if your child was born prematurely.
Keep in mind that it can take some time to get the Synagis shots approved by your insurance company, so start early if your child is in a high risk group and needs Synagis this RSV season.

What You Need To Know

  • Once you start Synagis during an RSV season, you typically complete the season, even if your child outgrows his risk factor. For example, if your 31 week preemie started his Synagis shots when he was 5 months old in November, you wouldn't stop them in December just because he was now 6 months old. If your child's risk factor was attending daycare and your child is now staying home, you might talk to your pediatrician about whether or not you needed to continue your infant's Synagis shots though.
  • During a typical RSV season, kids get their last RSV shot in March, which provides protection into April. The timing of the last shot may vary though, depending on whether or not experts are still seeing a lot of children with RSV into early or late April.
  • Some experts consider multiple births, crowded living conditions, family history of asthma, and low birth weight, to be additional risk factors to use when considering which 32 to 35 week preemies should get Synagis.
We have been told that Josiah qualifies for these shots.  The request for approval (with the insurance company) was submitted today by the pediatrician's office.  We have been assured that he will be approved.  At a cost of $900.00 per shot (which supposedly increase in cost, with each dose), we are thankful for this great team of professionals working with us and advocating for our son.

I read two quotes today (on a social media networking site).  It's funny how sometimes things seem like they were intended for you to see, at just the right time :)
  • "When life puts you in tough situations, Don't say, "Why me?"  Just say, "Try me!"

  • "Don't believe in miracles - depend on them" ~ Laurence J. Peter


  1. You not only have a great support system but you have God and his healing powers with you. Kids are so resilient. When they have open heart surgery they bounce right back and I know that's what is going go happen with Josiah.
    My son had the RSV shot, at the 4 month mark. They felt because his lungs were not fully developed That is would be a safe bet for him to have it.
    I'm praying everyday for Josiah, You, Carl and the boys.
    My nana used to say that there were 'special angels for kids with health problems'.
    Josiah has a flock of them with him everyday and with all of you..