The Stent Is In!

We woke up ready to brave the day and were surprised to see we would also be braving 4 inches of fresh snow...and it was still falling.  We knew it was going to snow, but thought it was starting later in the morning. The snow plows and slick roadways were a nice divergence for our minds on this particular day.  We were headed to Children's Hospital Boston for Kalvin's fourth catheterization procedure.  This would be his first (and hopefully only) stent.

Kalvin was fine and didn't really say much as the anesthesiologist and her assistant started discussing the details of the surgery.  They described the procedure to Kalvin as a series of  "pictures"  the doctor was going to be taking of his heart.  Genious!  Then they started getting a little too specific about exactly how this picture taking procedure was going to go down.  I tried talking over them to let them know it probably was not the best idea to let Kal know he was going to be wheeled out of the room we were all in to go to the cath lab...without us.  Once he heard this, panic set in.  One of  Kalvin's big fears (other than needles) is being without Lars or I in a strange place.  Even at home, Kalvin will panic at times if he doesn’t know exactly where we are so realizing he was going to be in the O.R. without us,  scared him...alot.  He began drilling us with one great questions after another.  We attempted to answer all his questions, but it was obviously making him more and more anxious.  The anesthesiologist realizing this, suddenly said she thought he should have his "drink" right away.  Kal drank it like a champ,  no problem.  I understand this is an impressive feat because the taste is horrendous and most kids end up spitting it right back out.  Yeah,  one hurdle down.  Then Kalvin continued on with the questions,  tears pouring down his face.  We all waited for the drink to take effect.  It felt like hours,  but it actuality it was only about 15 minutes.  It was a strange and uneasy feeling to watch Kal become more and more intoxicated from the "drink"  as time went by.  Not something you really want to least not until your baby is well over 21.  He started smiling and waving to one of the nurses - he really is such a flirt.  The good news - he should not remember any of this the anesthesiologist reminded me,  the pink portion of "the drink" is a "memory eraser.   Hmmm, again, not so sure how I feel about this.

And then, the absolute worst part of the day had come.  Time to say goodbye and tell him one more time just how much we love him.  Time to place his life in someone else's hands.  This part never gets easier.  It was the absolute worst part of his surgery at 5 days old...wheeling him to the elevator that led to the O.R. and telling him how much we loved him and how strong he would need to be.  It was hard to hold it all in then and not completely crumble to the floor.  It is just as hard now.   And it is even harder to turn and see your husband doing the same.  No one talks.  We just let him go.  Then we hang on for the ride.  You hope and pray he will be alright.  You block out all the thoughts that try to creep into your head.  You block out the thought that this is the procedure that permanently damaged his artery and now his leg when he was 3 months old.  You try not to think about what could be damaged this time. You try not to think about little Mia who lost her life just months ago in a cath lab in Florida.  You just put on your mental blocking helmet and you block, block, block.

The doctors and nurses in the cath-lab are wonderful.  They know how you are feeling and do everything possible to make you comfortable.  The nurse that stays with Kal throughout the procedure contacts us via our cell phone to let us know when he is fully sedated and stable.  Then Kalvin's cardiologist will meet with us to update us on what they find and what they plan to do.  And finally, the nurse will let us know when the surgery is complete and he is starting to wake up.  The procedure was expected to take 3 - 4 hours.  It took a bit longer.  It was stressful. I just tried to remember through it all - the motto of the day - block, block, block.

I always have so many big plans for this 4 hour chunk of time where I am left to sit and wait.  Lots of things I am going to catch up on. Funny how my mind doesn't cooperate.  I just sit and sit. Try to read, to write and to hold a conversation,  but none of that happens.

We took a walk to get a coffee and bumped into Kalvin's nurse from his original surgery,  Elizabeth.  She is part of Kalvin's family now.  She spent 15 days trapped in a room with us...Kalvin's first 15 days of life and the most stressful 15 days of our lives, thus far.  She knows us.  She is always a joy to see.  It is sad,  and a blessing in a way I guess,  that Kal doesn’t remember her.  We have seen her numerous times at Children's since 2005,  but most of these times Kalvin has been in the O.R. so he doesn't see her or remember her when he does.  A familiar face at the Hospital is always so comforting for Lars and I though.

We headed back to the waiting area to uhmmm, wait.  Dr. Brown,  Kalvin's cardiologist,  came to the door to meet with us.  There is always this sinking feeling when the doctor arrives in the doorway.  You know he is coming to update you,  but your mind jumps ahead and instantly thinks the worst.  They found the gradient in Kalvin's coarc to be about 15% which is not bad at all,  but they decided to go ahead and place the stent in to see if they can get more blood pumping to his leg.  The pictures of the femoral (leg) artery were not good.  The portion of the femoral artery that was damaged was bigger than expected and the collateral arteries (the spaghetti like blood vessels that grew around the damaged area to reconnect the femoral artery) were,  as the orthopedic had surmised a few weeks ago,  pretty tangled up.  The artery in his leg will need to be addressed right away and;  therefore,  the doctor wanted to add the stent to be sure the aorta is as wide as a normal person's and pumping as much blood as possible down to his legs.  A stent to open the coarc was the best choice at this time.  Kalvin weighs 75 pounds now so the stent should not have to be removed (which would require major surgery) or replaced at any time.  They may have to balloon the stent open again when he is in his teens, but he is big enough now that it will not have to be removed or replaced.

It is ironic to think that one of the procedures that helped save Kalvin's life as an infant - threading wires up through the artery near his groin to reach his heart (same as today’s procedure) - destroyed the blood vessel that feeds his left leg with blood.  A network of spaghetti - like blood vessel grew and took over but are not delivering enough blood,  causing the left leg not to grow as it should.  His left leg is now about an inch or more shorter,  and much weaker than his right.  If you recall from this post earlier:  A Silver Lining.

The news was bittersweet. We are overjoyed that there is a possibility his leg can be repaired and that his heart his looking healthy.  There are no signs of stress from any of the repairs made when he was an infant. His heart will never be  "fixed"  it can only be repaired.   The cath-lab is the best way to measure the blood pumping through his heart and check on how it is functioning.  All is looking good.  They will take a look at his pulmonary arteries again in a catheterization procedure in a few years.  The lung scan from the pre-op was about the same as it has been all along with even a slight improvement which is absolutely wonderful news.  His valves are looking okay.  We just have to deal with his leg now.  I will detail this in a later post because it is very involved.  I just pray it is not too much for the little man to handle.

We met Kalvin in the recovery room - same room we left him in many hours ago.  Anesthesia does not really agree with Kalvin.  He is such a gentle loving person and not so much when coming off the anesthesia. He faced 6 hours of lying on his back...with a stuffy nose.  He was not happy and immediately began asking when he could sit up.  Similar to a car trip where a child asks how many hours have passed and it has been only 5 minutes,  the repeated question of  "when will be there"  or  "when can I sit up"  begins to exhaust you.  It was challenging for all of us.  He complained that he was hot - but thankfully no fever.  We kept cold wet towels on his forehead and face.  We removed blankets and wet his feet to try and cool them off,  but he still complained that he was hot,  so very hot.  He would cry that he was thirsty,  but couldn't drink.  They tried to give him ice chips,  but he didn't want those - mostly because he had a tooth sealant applied to his teeth a few weeks ago and the dentist told him he can no longer eat ice...he took that to heart (no pun intended) - she would be so proud!   All we had left to do was wait out the six hours...good thing we had plenty of movies to watch! 

Kalvin had recently seen the movie E.T. We tried joking with Kalvin about his "E.T." finger...he was not finding it amusing in the least.

Continued in the following post: The Fifth Hour.
There are six entries in total relating to Kalvin's cath lab.  You can read the other posts here 1, 2, 3, 4, 5  in order.  Thanks for stopping by.  We love to hear your thoughts and comments!

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