It has been 6 years since Kal has had any heart related hospital stays and I would say that is a pretty good run of good luck - but that isn't making this new news any easier to deal with. We went for Kal's annual cardiology appointment last week, yes I did say annual and I do realize how blessed we are that these appointments are now only annually, and heard those words we were not really planning on hearing - "we will need to go to the Cath Lab and put a stent in his coarc"! I am learning that with each age, your child's cardiology appointments present new challenges. There are the baby stages when trying to keep them from eating before the appointments so they can be sedated is heart breaking and challenging all at once. Then come the toddler stages when they are too big to be sedated and keeping them still during the procedure itself is completely draining. Then there are a few years where things were fairly smooth - I would say ages 5 and 6 have been the best for us thus far. So I wasn't really expecting age 7 to be much different from the previous two years, but once again we are facing a new challenge - Kal's own line of questioning.

As I sit and watch the echocardiogram screen I can feel my stomach tighten. I see the red streaks of color moving back and forth and I see the blue streaks doing the same and I strain to make out what the screen is telling us. I can remember a time, as if yesterday, when I would become physically ill while waiting and staring at the echo screen. I would find myself praying all would be ok and straining to make out anything that looked wrong on the screen - like I would really be able to decipher anything wrong on the screen, but yet I still kept on staring and trying to figure it all out. I fear some of this fear is now shifting to Kal - he is asking a lot of questions and showing concern about the procedures for the first time. His first question to me in front of the technician is "what are the sticky things on my heart for?"

"To see how your heart beats" the technician answers.

Kal then turns to me and asks, "What if it is beating too fast?"

The technician answers quickly - purposely not giving me the opportunity to respond, "It is not."

Kal seems to be satisfied by this response and settles back in to watch his movie. Kal is now asking the questions I use to want to ask, but knew I couldn't for many reasons. This is so much easier for me to deal with than when he was 3 or 4. This is "easy squeezy" for ME now, but Kal is so aware of what is going on and showing concern about it all for the first time. For an already anxious child this could really become more anxiety provoking than I anticipated. I quickly decide in my mind that we will just have to watch what we say in front of him and be sure to make it all "light and fluffy".

The black, white and gray shadows on the echo screen again automatically cause my stomach to knot up-the same way the smells that permeate the lobby of Children's Hospital take me back 7 years with one sniff.

Kal is holding his breath now which makes his lungs cover his heart and hard to get clear images of his heart parts. The technician explains this to Kal but he is still struggling to relax and breath normally. When we get into the clinic room we are greeted by Kal's cardiologist. His calm demeanor and big smile always put me at ease, but he has paper and pen in his hand today and I know instantly what that means... he is going to draw us a picture and that is never good news. I struggle to make small talk and hope that I am wrong. As he looks at us and asks if he should take Kal out of the room to discuss "a trip to the Cath Lab", my husband and I look back and forth at one another. Hmmmm, instantly I think of Kal's teachers telling us that we might be sharing too much "adult conversation" with Kal lately. How do we handle this? How will Kal handle this news? Will he understand? We opt to let him stay in the room and try and keep the conversation light and fluffy - as if a trip to the Cath Lab for your 7 year old can ever be "light and fluffy"?

We have known this day would come, but it is still scary for us and now that Kal is 7 and asking lots of questions, I imagine this procedure will be a lot more stressful than I originally thought. They are going to put a stent in his coarc where the surgeon repaired it at 5 days old. They patched it with tissue (human tissue that was treated but that doesn't grow) and now he has grown so much (he weighs 75 pounds and 4'5") that the coarc is once again very narrow. The dr. asks if we have noticed any signs - slowing down before his friends have to, shortness of breath, tired alot, or leg aches. A light bulb goes off and I am feeling like a very neglectful mother...he has complained of leg aches... A LOT and I thought it was nothing more than growing pains. Kal seems to be taking this all in stride and doesn't really ask any questions - the dr has done a great job at making this all light and fluffy. And now we wait for the Cath Lab to call and schedule the procedure. Kal does complain a bit about having to be at the dr and does ask us why his younger brother doesn't have to have his heart looked at by the dr's and then he asks the heart wrenching "what is wrong with me...and why am I broken?" and I swallow hard and point him to the gift shop.

There are six entries in total relating to Kalvin's cath lab.  You can read them here 1, 2, 3, 4, 5 in order.  Thanks for stopping by.  We love to hear your thoughts and comments!

Kalvin, born 2005

Kalvin was born on May 22, 2005. We were completely shocked and devastated to learn of the CHDs at his 20 week ultra sound. Once we were under the care of Children's Hospital, Boston, Kalvin's prognosis improved and we were filled with a new sense of hope. Kalvin was born at 38 weeks, weighing 10 pounds and was 21 1/2 inches long with d-transposition of the great arteries, a VSD, Coarctation of the Aorta and pulmonary stenosis.

A team from Children's Hospital and the NICU at the Brigham and Women's Hospital were outside the delivery room when Kalvin was born. They whisked him away to the NICU when he was just minutes old. And then, when Kalvin was just a few hours old, and before I had even had a chance to hold or see my beautiful baby boy again, I was asked to approve the atrial septostomy surgery.

At five days old Kalvin underwent 8 hours of open heart surgery to correct his defects. I remember meeting his surgeon, Dr. Pigula, and asking to see his hands. I knew our future lied in his hands and I wanted to see what the hands that would determine my future looked and felt like. I asked Dr. Pigula what he thought the most difficult part of the surgery would be and his reply was "it is just a lot to do all at once."

Once Kalvin was back in the ICU and we were allowed to see him for the first time, he experienced junctional ectopic tachycardia (JET) with a jet rate of over 200/min. Doctors and nurses came running from all corners and surrounded his crib. They worked on him for a while and ended up building an "igloo" around his crib to try and get his JET rate down. The doctors did a great job at making this all seem somewhat routine, but I overheard the doctor telling his students that Kalvin's case of JET was one of the worst they had ever seen. This is when we realized this was going to be a roller coaster recovery and every day would present new challenges. Kalvin came home after 21 days. We were a little nervous without all the doctors and nurses around, but we quickly felt like ordinary first time parents-sleep deprived and concerned with diaper changes and feeding schedules!

Kalvin's pediatricians noticed, at his 3 month check up, that the pulse in his left femoral artery was nonexistent and sent us immediately over to Children's Hospital. Kalvin had two catheterizations to correct his COA; one at 3 months and another at 9 months old. The first one was unsuccessful and resulted in a damaged femoral artery in his left leg. His second catheterization was a success! As a result of his damaged femoral artery, his left leg is now about 1cm shorter than his right and also has less muscle mass, but it doesn't slow him down!

Kalvin continues to thrive. He is in the 100th percentile for height and weight and doesn't take any medications. He is a vibrant loving little boy who loves boating, playing in the snow, music and going to and playing doctor! He thinks that all the people out there in the world who "help" you are nurses. When we were in a store and were having trouble finding something he told me "go get a nurse to help us!"