Thursday, March 3, 2011

Back to Vandy

On Saturday, January 29th Mike was leaving for work. It was 8:15 am and Wyatt and I were laying in the bed "talking". He starting breathing a little raspy (not different from what we had dealt with earlier in the week that his doctor told us was based on position and his ability to swallow) so I picked him up from his back and placed him on my chest, facing me. He immediately quit breathing. I sat up with him hoping he would begin breathing. He didn't. I walked out into the living room and (only by the grace of God) Mike was still home. At this point, he was turning blue. I immediately called 911. While I was on the phone with 911, he went limp and lost all color. During my call to 911, I somehow hung up on them. Mike called them back and I took Wyatt and laid him on the couch. Somehow the Lord gave me the clarity to give him CPR rescue breathing. I tilted his head and gave him two breaths. I could hear the air passing secretions in his throat. I then gave him about 6 or so more breaths and he started to cry. Shortly thereafter the paramedics arrived and brought him to Vandy.

In the ER they took blood to check for all sorts of things. They were immediately concerned that he had RSV or some other respiratory problem. We were moved after about 2 hours to the PICU where we stayed for a day. During our PICU stay Wyatt blew the IV vein he had. Now, mind you the last time he ate was at 6 that morning. I tell you this because it took them 4 hours and 12 people to get a new IV in. They had to use the ultrasound to get it in. So we were moved to the regular floor on Sunday. All of his tests came back for no infection, no RSV or other issue of that nature. Monday, he had another "blue spell". I was alone. I couldn't get the nurse here fast enough so I call the in house first response team. His blood oxygen went from 100 to 75 to 24 in a matter of 30 seconds. Before first response got here, a nurse came in and had him breathing again. At this point they had determined that his issue was structural and not a cold. ENT and pulmonology came in and did an evaluation. They wanted to do a bronchial scope to see what was going on.

On Tuesday he had the bronchial scope thingie which found that he had a compressed airway close to where the lungs split. It was also found that he has tracheal malaysia (or floppy airways).  They weren't sure why the airway was compressed, so they ordered a CT for Wednesday. Pulmonary wasn't sure so they were going to follow up with the CT as well. Now, mind you he went from Saturday morning until Tuesday night without eating. He ate at 8 pm Tuesday night and went NPO again at midnight because he had to be sedated for the contrast CT. When he was able to eat again, they stopped his IV. But, when they went to start it again for the CT, the IV was no longer good. So, after being poked again 3 more times, he had to have a pic line put in. In the meantime, they wanted to check him for reflux so they ordered a pH probe put in. So, Friday at one they put in the pH probe. After it was put in they had to take an x-ray to make sure it was in correctly. In doing this, they found that he had air in his intestinal wall. So, they stopped his feeds, again. One doctor told me that it was a possibility that they would have to do surgery and take our part of his intestines. Of course, I freaked. But after 48 hours of antibiotics this healed. They thought this air was because he had destated a few times.  The intestines require a lot of air and the lack of it can cause air to build in the walls.  From the CT scan, we found that because his heart is on the right side of his chest, his aorta is laying on his windpipe, causing it to compress the lower part of his airway.  We were told that our options were an aortapexy and that a trach was a possibility.  Of course we had no idea whatsoever what an aortapexy was and a trach was not even an option to consider in our minds.  The ENT doctor had told us that a trach had a 1 percent mortality rate for every year it was in.  Even this 1 percent was too much of a risk for us.  The pH probe showed only four spells of reflux in a 48 hour period.  However, because of Wyatt's tracheal malaysia, any little bit of reflux was bad.  So, they started him on Nexium and Pepcid.

After attempting to do research on aortapexy online, I was terrified.  All that I read was that they had to break the sternum to get to the aorta.  Mike and I were both opposed to this surgery.  It was very difficult to reason with a surgery to fix something that only happened from time to time.

Let me stop right here to tell you that these "blue spells" happened every day.  Generally one a day.  They were triggered by his bearing down to have a bowel movement or when he became fussy.  So, anytime he would make a noise, I was at this bedside, soothing, be it at 2 in the morning.  I wasn't sleeping much, but at least he wasn't turning blue.  Most of our days were spent rocking and singing.  I learned quickly that Wyatt loves Fire and Rain by James Taylor.  However, I could not spend my life on pins and needles.  The doctors also said that they would not allow us to take him home as long as he was still having these spells. 

As time went by, a definite decision was not made.  For the most part, all we did was sit in the hospital, rock and see the daily doctors.  Mama was a little frustrated to say the least.  About two weeks in, I had a mini breakdown.  So, our amazing nurse had what the hospital refers to as a Care Conference scheduled for us.  This is where all of the doctors that Wyatt sees gets together with us and we all formulate a plan.  This conference was set for a Tuesday.  ENT and the general peds doctor came.  Our pediatrician also came.  Surgery was late, but they said that they would talk later to him.  Let me also interject that only ten minutes prior to the Care Conference, our pediatrician so graciously told us that she was leaving the children's group we went to and that we would need to find a new pediatrician.  Oh, and then she proceeded to tell us that there was no one left in the group that she would recommend for Wyatt.  Yeah, you can imagine my anger.  So, we had the Care Conference.  During which it was determined that all parties would get together and make a definite plan. 

Thursday morning during rounds, the surgeons came in and told me that they felt as though a Nissen surgery was the right course of action to take.  This would cut down on all of his refluxing.  Score!  We knew this surgery and knew that it was an "easy" fix.  Just as we were given this information, the general peds doctor came in and said that no, this information was incorrect and that they wanted to do the aortapexy surgery.  She told me that they would all talk about it once again and make a determination.  Then, approximately fifteen minutes later, the ENT team came in.  They told me that the aortapexy AND trach would have to be done.  Lets suffice it to say, I went ballistic.  My super sweet nurse  listened to me freak out.  She then called the patient advocate to come talk to me.  The patient advocate is the person who someone would go to just prior to filing a grievance.  We talked about everything that took place and she went into action. 

When the smoke cleared, it was determined that Wyatt would need to have the aortapexy surgery.  This would alleviate the pressure on the airway and help "fix" the blue spells.

I'll take this moment to tell you what an aortapexy surgery is.  Aortapexy is basically where they go in and attach the aorta to the sternum. .  As the aorta is pulled up, the connective tissue between the aorta and the windpipe pulls the windpipe open to allow easier airflow.  He will grow with this and as he gets older he just needs to know this in case he needs open heart surgery some day.

In the beginning, Mike was totally and completely opposed to the surgery.  All I knew, was that I wanted my baby to be better.  I didn't want to be afraid to leave him alone for just a second.  Our surgeon, Dr. Lovvorn, came in and explained in great detail how the surgery would go as well as what the risks were and what we could expect.  I did continued research online and found much for informational materials and felt good about things.  Mike also felt good about it.  Apparently, the sternum would not be split.  Rather they go in through the second and third rib to reach the aorta.  Surgery was scheduled for the following Friday.  Dr. Lovvorn told us that he didn't want to rush into the surgery, mainly because he still needed to do research.  You see, not only was Wyatt's heart on the right side of his chest, instead of the left, he had Poland Syndrome.  He had not seen the combination of the two in a child that needed this surgery.  So, they took more x-rays and ultrasounds to map out Wyatt's internal make up.   

Anytime Wyatt has to be sedated through anesthesia, I freak.  We had a mishap in the beginning, although no one is sure why, and I am terrified.  Dr. Lovvorn said that he too was apprehensive and that he asked the cardiac anesthesia team to be in on the surgery for Wyatt. 

Surgery went beautifully.  Dr. Lovvorn was very pleased with the way things went.  The surgery itself took longer than planned, only because they wanted to make sure that they did everything perfectly.

We had been prepared for Wyatt to go to the PICU as well as have a chest tube after surgery.  He was doing so well that they didn't feel the need the put him in the PICU.  We were elated!  He was still sedated from the surgery, so mama went to bed around ten.  Around 11:30, I was awoken to the nurse talking to Wyatt and his monitor going off.

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