Sunday, February 6, 2011

Cardiology Appointment Update

Okay, folks, so there seems to be some sort of misunderstanding regarding the update I shared last week following Chase's cardiology appointment. I've received so many "Yays!" and "Congratulations!" and "Great news!" responses, which have left me quite perplexed. So, here's what I said:
Appt went well. He did *awesome* for the echo!! Will have cath in March or April to get more info on narrowing and possibly balloon it...
There's only so much information you can post in a 140-character tweet, right? Right. So let me break this down for you:
  • CHASE DID AWESOME FOR HIS ECHO! Yes, this of course is reason to be excited and think things went well. From the perspective of getting a mobile, determined little 15-month-old toddler to lay still for 20-30 minutes in order to complete the echo and get decent pictures, it was the best appointment ever! He watched a little Cat in the Hat and Curious George on my iPhone (that I happened to download that morning right before we left for his appointment... whew!) and laid so still the entire time. Hubs and I were beyond impressed and proud of our little warrior!!!
Now for the not-so-great news from the appointment:
  1. Chase's pediatric cardiologist (PC) saw a narrowing of Chase's left pulmonary artery (LPA) during his last echo in November 2010. He thought Chase would need to head to MUSC in January for a heart cath to look into this problem, but after consulting with Chase's surgeon at MUSC, they decided they could delay Chase's heart cath until early spring.
  2. Something to keep in mind: Chase shouldn't have needed ANY cath procedures until his pre-Fontan cath, which, for all intents and purposes, should not be happening until Chase is 3 or 4 years old.
  3. At his appointment last Friday, Chase's PC again saw the narrowing of Chase's LPA, and concluded that we needed to get Chase on the cath schedule at MUSC in March or April. Again, if it weren't for this LPA narrowing, Chase would not be having a cath procedure for another 2 to 3 YEARS.
  4. Because of the location of the LPA narrowing (near the exact point where his inferior vena cava (IVC) will be connected to his LPA during his final scheduled surgery, the Fontan), it is highly unlikely that any intervention in the cath lab (i.e. ballooning the area) will be very helpful. They cannot place a stent to open this narrowing up, again, because it is where the surgeon will be connecting the IVC to the LPA during the Fontan. So essentially, there is NOTHING they can do about this narrowing, EXCEPT...
  5. Chase may have his Fontan as early as THIS SUMMER, when he will barely be 18 MONTHS OLD. The preferred age for the Fontan at MUSC is 3 or 4 YEARS OLD. Obviously anyone can see this is a HUGE discrepancy in age. Chase would be much younger, weigh much less than they'd like, have much smaller veins and arteries than they'd like, etc. During the Fontan, the surgeon will use an extracardiac conduit, essentially a graft/tube, and he doesn't want to have to go back in with another surgery later to change or resize it as Chase grows. All in all, they CAN do the Fontan this young but it is NOT preferred. By any means.
  6. Just to confirm, in case I've lost you, THIS IS NOT GOOD.

So sorry that my earlier tweet/text on Friday didn't seem to convey the outcome of Chase's appointment very well. It's difficult to keep people updated with the right information, especially if they don't read my blog. I like to put things out here so that I can avoid telling the same stories over and over and over again.

But I digress... I will tell you that I sent an email to a PC at MUSC who is very familiar with our case and asked him several questions concerning Chase's PC's assessment of needing the cath in March or April. When I spoke with the MUSC PC previously, he informed me that it is not at all uncommon to see a narrowing at the point in the LPA where the stent (from the Norwood) was removed (during the Glenn). Only thing is, they typically never see this on echo, but since Chase was able to get such good pictures during his Nov. echo and again last week, they were able to see the narrowing on echo. So if you think about it, it's quite possible that almost all HLHS patients in our area aren't sent down to MUSC for their pre-Fontan cath procedure until they are closer to 3 or 4 years old, and they never would've known about the narrowing because it's almost impossible to see it on echo. So hubs and I are very interested in the MUSC PC's opinion once he has a chance to review the Nov. and Feb. echos and determine if he thinks it's necessary to be concerned about the LPA narrowing, enough to put Chase through a potentially unnecessary cath procedure, which requires anesthesia, intubation, an overnight stay (at minimum), etc. If the MUSC PC feels it'd be in Chase's best interest to move forward with the cath if for no other reason than to take accurate measurements of the LPA narrowing and confirm there are no issues or problems with the decreased blood flow to the left lung, nor conversely, no issues or problems with the increased blood flow to the right lung, then so be it. We will do whatever is in our son's best interest. However, hubs and I have never been the kind of parents to take one person's opinion as the final answer and will continue to question every decision regarding our son's care. Obviously. We are his only advocates and we take our job VERY seriously.

Hopefully this helps you all understand where we're at and what our next steps will be. Please keep us in your thoughts and prayers as we work with Chase's medical team to determine what is truly in his best interest. Thank you!

On that note, I think I'll share a few pics of my little man from his appointment last Friday. You're welcome! :)

Waiting to be called back for the echo. Notice his little one-socked feet... they had just finished his pulse ox (and blood pressures).

The end of the echo. He was absolutely amazing. This boy never ceases to amaze me!!!

Waiting to see the doc to discuss the echo results. Just look at those eyes. He sure does have a story to tell, doesn't he?

CHD Facts

February 7-14, 2011 is Congenital Heart Defect Awareness Week. I've borrowed a wonderful idea from a fellow heart mom, and will be spotlighting a different CHD child on my blog each weekday starting tomorrow. These kids all have a connection to Chase in one way or another. All of them have had similar journeys... some with more or less bumps in the road. Please stay tuned this week for these encouraging and enlightening stories of other families who have been affected by CHDs. We covet your ongoing support and continual efforts to aid in raising awareness of CHDs.

Below you will find several interesting facts you may or may not already know about these life-threatening and life-altering defects.

  • Congenital heart defects (CHDs) occur when a baby's heart fails to form properly during early pregnancy. In most cases, the cause is unknown, although scientists feel both genetic and environmental factors play a role.Some environmental factors that increase the risk of CHDs include the mother’s use of cocaine, alcohol or certain medications while pregnant. Some maternal medical conditions – such as diabetes – may also increase risk.
  • CHDs are the most common birth defect – and the leading cause of birth defect-related deaths.
  • CHDs occur more often than Spina Bifida, Down Syndrome or hearing loss – and kill twice as many children as childhood cancer.
  • It is estimated that 40,000 babies with CHDs are born in the United States each year – that’s one in every 100 babies.
  • Although some babies will be diagnosed at birth, newborns are not routinely screened for CHDs – and pregnant women are not routinely tested for CHDs.
  • There are approximately 35 different types of congenital heart defects.
  • Some CHDs may be treated with surgery, medicine and/or devices, such as artificial valves and pacemakers. In the last 25 years, advances in the treatment of heart defects have enabled half a million U.S. children with serious CHDs to survive into adulthood.
  • Many cases of sudden cardiac death in young athletes are caused by undiagnosed CHDs and childhood-onset heart disease.
  • Early detection is critical to the successful treatment of CHDs. Some heart defects can be detected by a routine ultrasound – but the most effective prenatal test is an echocardiogram performed by a Pediatric Cardiologist.