Day 13

April 8, 2010

Joshua is now 13 days old despite all odds.  We accept this as a direct gift from God since he shouldn’t even be here now.  The Cardiologist did another echocardiogram yesterday on Joshua and he stated to us that it pretty much shows what the last one showed last week.  So his pulmonary pressures remain higher than the pressures in the rest of his body and therefore, Joshua’s prognosis according to UNM has not changed.  The Cardiologist also packaged everything up and emailed everything over to Cincinnati.  Cincinnati Childrens has agreed to review the data and send me their official opinion in writing.  So far, I have not received anything but hopefully we will know today or tomorrow what they think.  If Cincinnati gives Joshua the same prognosis, then we will have some very serious and heartbreaking discussions.  So, although I am happy for the progress, it also means we are actually going to have to work all the details of our plans as well.  It is coming down to the wire.

Joshua himself is doing ok on the standard vent with currently 35% O2 and SPO2 (Oxygen Saturation) at 75%.  He has had some more bradycardia (slow heart rate) episodes throughout yesterday and today.  His coloration is still not that great.  Especially against one of us, his coloration is definitely dusky, not pink.  He also has been continuing to poo.  He has pooped 4 times so far (not that I’m counting hehe).  This morning I was changing his diaper and he pooped and peed as soon as I took his diaper off!  He was marking his territory I suppose haha.  We got to see his face without all the tape and smashed cheeks again and he looks like a totally different baby, very cute cheeks!  We have had some good times in here holding him as much as possible and experiencing these little events that no one can take away from us.

We haven’t quite heard from Cincinnati yet.  They are waiting on a CD of the echocardiogram so that they can do a full study.  Hopefully we will hear tonight or tomorrow regarding their opinion of Joshua’s condition.  I will update when I know more.

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2 Responses to “Day 13”

  1. Becky St.Francis said

    So glad that you are finally getting the doctors to do what you asked them to do in the beginning. We pray that you have as much peace with your decision making that is possible. We continue to pray that a miracle will happen and he will make progress. Hang in there and keep your heads up. Thoughts and prayers for Joshua and you guys. Becky

  2. Brandee Glover said

    My family is contiueing to pray for your family! We know the struggles you are going through right now and how the little things like poop are so amazing!
    Brandee
    CDH Mom

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