Saturday, March 2, 2013

One helicopter ride and 23 days in the hospital.....the journey of Evan James.....continued

On Friday January 18th we had a little bit of a better day.  Scott left early to got to the hospital and get the report.  I was so afraid at that time to go see him.  I still feel guilty about that, but it was SO hard for me to see Evan in the state he was in.  I broke down every time I walked into his room.  So, Scott was the brave one and got the reports from doctors and then relayed the message to me.  He even told the doctors not to give me any reports and have everything go through him.  I do remember talking to one o our favorite doctors and she asked me what questions I had.  All I could say is that I had a lot of questions, but I was afraid to ask them, because I didn't want to hear the answers.  By this point my body was hurting.  I forgot that I had just given birth a few days earlier and had not been taking care of myself.  I didn't eat, drink or sleep and it was catching up to me.
We didn't get many updates on that day.  It was a day of wait and see how he is responding to medications and rest.  We also had to wait on a lot of the test results and were told that it could be several days before they know anything.  They did perform another heart ECHO that day and it looked slightly better, so we were hopeful. So, the assumption was that he was responding to one of the medicines.

We got to see his eyes a few times that day when they turned off the bili light
That night my mom spend the night with him and Scott went back up to the hospital early in the morning.  Saturday January 19th is a day I will never forget.  I went up to see Evan in the afternoon and it was a tough afternoon.  You could see that he was working really hard to breathe.  His monitors were beeping all the time due to high blood pressure and other vitals that were not looking so good.  His kidney function was also worsening.  My heart sank every time I heard an alarm from the monitor.  I was on edge all afternoon.  I left the hospital for a while to try and get some rest.  Hannah was with Debbie and Dan all day, so we knew she was well taken care of.  My mom and I went upstairs to the concierge lounge at the hotel to get a little snack, because I hadn't eaten all day.  This was the only time I did not have my phone with me.  The phone rang in the lounge and the lady called out my name.  My heart immediately started to beat faster.  I knew it could not be good news if somebody was tracking me down. It was Scott on the phone and he told me I need to come back to the hospital right away, because it was not looking good. He said they did another heart ECHO and his heart function worsened.  They wanted to intubate him and move him to the Cardiovascular ICU.  I completely lost it and was hysterical.  My mom drove me to the hospital and I remember walking into his room and seeing Scott, Allison, Jeannie and Irv all in tears.  I remember Scott saying to Evan that mommy is here and he needs to keep his eyes open for another minute.  In my mind I was thinking the worst case scenario, but really he was just going back to sleep.  The doctors came in shortly after I arrived and said they wanted to move forward with the intubation as soon as possible to take some stress off the heart (breathing takes up 20-30% of your hearts work). They were getting a team ready for it.  They also had the ECMO (life support) team on standby and brought all of the equipment in for that procedure.  They informed us of all of the risks and everything is just a blur to me.  At that time they gave him a 50/50 chance, because his heart function was so poorly.  His outlook was not very good if they had to put him on ECMO.  I was able to lean into his bed and kiss him several times and I just told him that he needs to be strong and FIGHT.  Next was the longest hour of my life.  We sat in a small room and just cried and prayed.  Finally the doctor came in and told us that Evan handled the intubation just fine and they did not need to put him on ECMO.  He even had enough strength to put up a little fight.  At that point we knew he was a fighter.  I will also never forget how Allison said that she was so proud of him (for those of you that don't know Allison is a NICU nurse).  It made it even more clear to me how serious his condition was.  The doctor discussed next steps with us.  He said the next 7-10 days are critical.  Best case scenario would be that the heart can heal on its own now that they took the stress of breathing away.  If that was not the case they would have to consider putting him on the heart transplant list.  This was really hard to hear and swallow.  We were not able to go see him at that time, because they were moving him to the CVICU.  Jeannie and Irv went to stay the night with him.  Scott and I decided that we needed to mentally prepare ourselves to see him like this and we needed to get Hannah.  She gave us so much strength during this difficult time.  Jeannie sent a text later that night saying that he looked peaceful and at that time I knew that intubating was the right decision.  I looked up the meaning of Evan's name that night.  It means "gracious God" and in celtic it means "young warrior".  It is the perfect name!

It still breaks my heart to look at this picture.
At this point is where Evan began his miraculous recovery.  We still had lots of ups and downs, but his turnaround was truly amazing.  

1 comment:

  1. I love him so much! I remember how proud I was of him that night. I'll never forget watching them wheel all of the ECMO equipment down the hallway away from his room after they intubated him and he handled it so incredibly well. All of those people who had come in from home late on a Saturday just for little Evan, and he didn't need them! I was so scared of him going on ECMO...he showed his amazing strength that night.