Wednesday, February 6, 2013

Going Home

Yes, we were discharged from the hospital today.  We are staying in Little Rock for a few more days before heading back to Bentonville to make sure we are comfortable with everything.  I am still a little in disbelief that I am sitting here in this apartment in Little Rock and our son is finally with us (sitting on the couch with Scott sound asleep while he is watching basketball.....I am sure this will happen quite often).  It finally feels like we are a family.  It finally feels like it is supposed to feel from the beginning.....with the exception that I am still a nervous wreck (but I am actually doing better than I thought I would).  This has been an incredible journey to get to this point and the last 3 weeks feel like years.
The metabolic testing came back on Monday and it was all negative (Evan is a pro at test taking by now).  We were so thrilled with those news.  I was able to start nursing him the minute we got those test results.  Such a blessing!
 Evan's diagnosis at discharge reads: Cardiomyopathy of unknown etiology.  They still don't know what caused his heart issues and according to the doctor today they are still scratching their heads.  All that matters now is that he got better fast.  The doctors have no reason to believe that Evan has a "bad heart".  They think it was just "the perfect storm" that caused him to get so critically ill.  His heart and kidneys have made a tremendous recovery and are almost back to normal function.  They have no reason to believe that he will have long term damage or that his condition would worsen again (but of course there is always a chance and that makes me very anxious).  He will have to go to his pediatrician once a week for a blood pressure check.  He will also follow up with a cardiologist once a week for the first few months.  Luckily ACH has an outreach clinic in Lowell and one of the cardiologists from Little Rock is there every Wednesday.  The Nephrologist will see him monthly at the clinic as well.  Evan went home on two blood pressure medications and baby aspirin (blood thinner).
Last night his nurse said that in her 18 years in the CVICU she has never seen a baby turn around so fast after being so critically ill.  Then she said that she remembers hearing about Evan the night he came up to the unit (remember the note they sent to all the nurses) and that she went to see him that night and she can't believe that he is the same baby now.  I remember writing a few weeks ago that we need a miracle.  I believe we got one.  We are so thankful for all of the answered prayers and of course the doctors and nurses that cared for him during our stay.  We are so thankful to the doctor that made the decision to fly Evan down to Little Rock.  We believe that doctor saved his life!
I hope that a lot of you will get to meet Evan someday soon.  I am going to be very protective of him for a while since it is flu and RSV season and his immune system is weakened.  He will not leave the house very much (unless we are going to a drive thru) for a while.
Hannah has just been so excited to bring her brother home.  She was so excited to see him and hold him.  She will be a great big sister!

Evan had to pass a carseat test yesterday.  He had to sit in in for 3 hours (as long as it takes us to drive home) and they had to make sure his vitals didn't change (he passed with flying colors).

I have lots of pictures of the big day that I will share sometime soon.  Right now I am going to try and get a little rest.


  1. Oh my goodness!!!! I am SOOOOOO happy for you!!!!!!!!! I am remember every single detail of the first night Nathan was allowed to stay in our room (Ben was discharged the next day), it felt like a dream to hold him without monitors or nurses and to just be his momma. Dave and I just stared at him ALL night long. We felt like we were in a dream. Reading this brings all of those emotions back! I am just so, so thrilled for you guys. It was the worst nightmare but you have seen God's incredible goodness and He had a purpose for this time. Evan has touched so many hearts and anyone who has followed his story has seen God at work!

    I cannot wait to meet this miracle boy!!! I totally understand about being over protective! We will wear masks and gloves if we need to! We are just so happy!! Love you all so much!!!!!!

  2. Oh Katrin I am so happy and thrilled for your family!!! We have been saying so many prayers for your little guy! I am just so happy for all of you!!!

  3. What amazing news! What a blessing and miracle!

  4. What a precious little face! Love the carseat pictures. Contined prayers for your family for Evan's progress of more recovery and strength. I hope all of you can start getting some rest too!!!

  5. Hallo Katrin,
    ich freue mich so, daß Evan nun tatsächlich das Krankenhaus verlassen konnte.
    Ich hofe, ihr könnt UCH Bld nCHhAUSE:
    iCH BIN GERADE BEI Maren inLeipzig und sie zeigt mir, was ich bei Facebook so ales machenkann und worauf ich aufpassen muß.
    ganz lieb Grüße Inge