21 March 2013

Heartbroken: A Diagnosis

The term heartbroken takes on a new meaning when you know someone who literally has a broken heart.  Yesterday we had another full day of appointments, beginning with our cardiologist and ending with the ear, nose and throat doctor.  During Luke's heart appointment, a tech performed another echo cardiogram as well as an EKG.  We weren't able to take pics of the echo because it's an ultrasound done in a dark room, but here are some photos of him having the EKG leads placed and then his doctor listening to his heart afterwards.

The goal of this appointment was to monitor the blood pressures in his heart and his lungs to help us determine if surgery will need to be scheduled sooner or later.  The longer we can hold out on the surgery, the better... his heart will be bigger which will potentially make it easier for the surgeon's tiny instruments to navigate (the surgeon will be wearing magnifying goggles regardless) and the bigger he is, the stronger his body will be leading up to the procedure, hopefully giving him a smoother recovery.

Initially the cardiologist thought the appointment went well, but she called this morning after downloading the data from the echo onto her big computer at main campus (we saw her at a hospital branch yesterday) and told me that while she thinks that his ventricular septal defect (VSD) is shrinking, it's structurally placed too close to his tricuspid valve for her to get a good estimation of the blood flow across the hole/defect which is necessary for her to determine the amount of pressure in his lungs.  She recommended this morning that we come back for an inpatient sedated echo cardiogram with the hopes that sedation will allow them to get a better look at his heart without him moving and making it difficult for them to get the views they need while he's awake and active.  The scary part for me is that since he's never been under anesthesia we don't know how he will respond and secondly, he will likely be placed on a ventilator for the procedure and the idea of him being intubated makes me physically ill.  Our cardiologist is also asking that we give her permission to complete a heart catheter procedure if the sedated echo doesn't give them what they need so that they can make the most of the anesthesia and keep us from having to come back another time for the cath.  Of course after I spoke with Dustin, we both agreed that we will grant her permission to do what is needed for us to get Luke's heart fixed.  The worst case scenario would be for the pressure in his lungs to be too high and go undetected for too long, which would create irreversible damage to his lungs and putting him at risk for other health complications later in life.  Both the sedated echo and heart cath would be ways to get the information needed to make the call on the appropriate timing for his surgery. 

P.S. We learned today that Luke is still growing nicely!  He weighed in at 11 pounds, 14.5 ounces (up 4.5 ounces from his weigh in last Thursday prior to receiving his Synagis injection).

A nurse placing the EKG stickers

Once the stickers are on, the test only takes 12 seconds!

Luke loved the doctors black framed glasses and he stared her down during his exam
Looking pretty comfy in Mommy's lap

Following the cardiologist appointment, we headed up to main campus for an afternoon visit with the ENT.  Upon completing Luke's exam,  he told us that he doesn't think that Luke's initial diagnosis of Laryngomalacia was correct, or he may have had it for a time, but has since outgrown it.  Now he believes that Luke has Subglottic Stenosis also known as a narrow windpipe.  His main symptom is the ever present chest retraction that is visible with every breath Luke takes - if you look closely at the last picture above, you can see where his chest is sinking in, that retraction happens every time he breathes.  The ENT doctor indicated that as long as Luke is still eating well (which he is) that he isn't overly concerned but that the next course of action will be for him to complete a bronchial scope on Luke, which he was hesitant to do considering it requires him to be sedated (and along with that comes the ventilator).

During the conversation with the cardiologist this morning, I shared with her the new information from the ENT and she indicated that it's a possibility that they could coordinate the procedures and include the bronchial scope during the sedated echo/heart cath that we will be scheduling.  I suppose it's all a matter of scheduling at this point and our doctor indicated that she would like for this to be done within the next month, so hopefully both of their calendars line up and we're able to get it all done at once.  She said that her part of the procedures would probably take 4-5 hours and if we also include the bronchial scope, it would be longer yet depending on how long it would take.

If any of my "heart mom" friends are reading this, please let me know if you've been through any of this stuff before.  What should we expect with the sedation and intubation?  Do you have any lessons learned you can share?  What's your experience been?  Everyone else, please say a prayer for us!  Luke has been eating and sleeping well and because of that, he's also been growing and thriving developmentally.  We are absolutely in love with him and we know that your prayers are aiding in him doing so well at this point.  Please keep praying, we know it's working!!

1 comment:

  1. Kristin-Thanks so much for sharing your journey with Luke. I pray for you all daily. You are such a strong woman and wonderful mother. Luke is such an amazing little guy! Rachel Heimerl