Aortopexy

March 19, 2015 – April 1, 2015

Aortopexy – a surgery where they suture the aorta to the sternum.  The innominate artery (also known as brachiocephalic artery or trunk) comes off the top of the aorta so both gets moved away from the trachea.  This is the standard surgery for severe Innominate Artery Compression(IAC) Syndrome.  Doctors usually only consider surgery if the compression is more than 40% and they are symptomatic.  

Diagram of Aorta and Innomate Artery(Brachiocephalic Artery or Trunk)

 

Aorta in relation to trachea and heart

 

Innominate Artery compressing trachea

Landrie had an Aortopexy done on March 19^th.  I was very nervous leading up to this surgery because it sounded scary… the aorta is the main artery of the body and any damage to it could be BAD.  The surgery took a few hours and went smoothly.  They said they were able to reduce the compression from 90% to 30%.  She was out of it the rest of the day but not overly fussy.  She had issues with tachycardia (high heart rate) after the surgery.  The doctors were not sure why.  They increased her pain meds thinking that was the cause even though she was not acting in pain.  It did not help.  Her heart rate was staying around 190 and spiking to 210 when drinking bottles and this was while calm and happy.  For her age, 160 should have been the max heart rate.  They did blood work and an EKG but other than it being rapid everything looked fine.  They assumed it was just that her body needed time to adjust to the aorta being moved even though it is not a common side effect of the surgery.  She came home on March 21^st with a 24 holster monitor.  The results showed everything was fine except for the heart rate being fast.  Her heart rate returned to normal after 2 weeks.  Her heart rate still increases when she drinks bottles and still has occasional episodes of it being high. No one is sure why, but the episodes usually only last a few hours.  Landrie recovered well at home.  Her surgeon said she would be back to doing normal stuff within a few days but I really didn’t believe him.  But he was right…within a few days she was doing all her normal 7 month old things including jumping in her jumper…which looked painful but she wasn’t bothered.  She had a follow-up with her cardiothoracic surgeon on April 1^st and he said her incision looked great and released her from his care.  

Top - before scope with 90% compression; Bottom - after scope with 30% compression

"And though she be but little, she is fierce!". - Shakespeare

After surgery with chest tube still in place

 

Smiling the morning after surgery

Winter months

December 2014 - March 2015

Landrie recovered well from her Supraglottoplasty.  We enjoyed Christmas and New Year’s.  She had several upper respiratory illnesses (URI) that were quite rough on her.  We frequented the children’s ER.  Definitely took me a while to figure out what was her normal and what needed medical attention.  It was a rough winter especially since she was in daycare and they get sick all the time.  She had a follow up with ENT in January.  Doc thought she was recovering well from surgery.  He wasn’t thrilled about her repeated sicknesses and slow weight gain, but decided to give her a little more time.  She went back in February for another follow up.  She was still struggling with the sicknesses and slow weight gain so he recommended surgery, Aortopexy, for her IAC(Innominate Artery Compression).  She had to meet with a cardiothoracic surgeon and they ran a few tests including blood work and an echocardiogram.  Her surgery was scheduled for the middle of March…..just 3 days after my birthday.  It was definitely an anxious birthday. 

Supraglottoplasty

December 3, 2014 – December 13, 2014

It was really nice being at home.  But every noisy breath was scary.  We tried to get back to normal….or a new normal because we would never be the same.  We put up the Christmas tree.  After a few more days at home, we went back to work and daycare.  I had been only at my new job for 2 weeks when Landrie went into the hospital and I had to take a week off.  Thankfully, my boss was very understanding and told me family comes first…you don’t hear that too much anymore in todays society.  

Over the weekend, I noticed a couple episodes of noisier than usual breathing but they did not last too long.  On December 9^th, one week after being discharged from the hospital (2 days being back to work and daycare), Landrie had an episode of concerning breathing that lasted a bit longer  and we got a call from the daycare.  My husband went to check on her but she seemed fine once he got there.  I decided that I was going to take her to childrens ER to have her checked out after work just to make sure she was ok.  After work, I picked her up and I started to cry in the hallway of the daycare center.  She was fine at that moment, but the stress of the last couple weeks had come crashing down on me.  The workers at the daycare were awesome.  We ate dinner and then I packed a few things just in case she was admitted.  My husband was leaving for a trip early the next morning and would be gone for a week.  So if she was admitted, he wouldn’t be around to bring me anything. 

 

They decided to admit her for observation due to respiratory distress.  I called my husband at 11pm at to let him know she was being admitted and he had to drive our son 45 minutes to my parents’ house at midnight.  After 24 hours of observation, the ENT said that her oxygen levels kept dipping so they were going to do surgery, Supraglottoplasty, the next day.  During this surgery, they would remove the extra floppy tissue.  Because they were adding her onto the schedule last minute, I had no idea when the surgery would be.  She wasn’t allowed to eat anything after midnight.  It was a very long and lonely day waiting for them to call us down.  They finally called her down late in the afternoon.  The hardest thing I have ever had to do was to hand my baby over to the doctors and walk away.  I cried the whole way to the waiting room.  The surgery went smoothly and in less than 2 hours I was in the recovery room with her….it was the longest 2 hours ever.   The ENT found that she had some other airway issues.  During the surgery, they did a bronchoscopy to take a look further down in her airway.  They found that she had mild tracheomalacia (TM), mild subglottic stenosis and there was an area of the trachea with a severe compression.  They believed this was caused by the Innominate Artery.  They were unable to pass the scope past this compression.  The next day they did a CT scan and confirmed it was Innominate Artery Compression (IAC).  They said that her trachea was about 90% compressed.  

Tracheomalacia (TM) is a floppy trachea (windpipe).  Subglottic Stenosis is a narrowing in the airway between the vocal cords and trachea.  Innominate Artery Compression is when the innominate artery that comes off the top of the aorta is compressing on the trachea. 

She had a few rough days of worsening breathing which is common due to swelling.  But she recovered well and we were able to come home on December 13, 2014 after 4 nights of being admitted.  Our plan was to see how she recovered from the surgery and evaluate if she would need surgery for the IAC.  I received a lot of information that I was not expecting.  It was a shock to find out there was something else going on and that it was something severe.  I had expected her to come out of surgery fixed and we could put all this scariness behind us.  But instead Airway Defects had delivered another unexpected punch.  And I realize that this is definitely not the end of the journey for us.