Monday, January 18, 2010

6:00 update

I just got off the phone with Chi's nurse. The module will be closed
until late this evening, so it's a night in for the sharbaugh family.
Dad is here for a quick visit. So it's an easy choice to hang out and
not feel guilty about not being at the hospital.

When I called, malachi's heart surgeon was bedside just checking in to
see how things are going. He didn't seem to have any major concerns.
The nurse reported that Malachi has had a pretty low temp most of the
day. She put a hat, socks, a fleece sleeper, and blankets on him
thinking that would do the trick. The next temp she took a while later
was only 36.0C. (37.0 is normal). So this is definitely something to
keep an eye on. A low body temp can result from an infection of sorts.
Malachi just had blood cultures sent to the lab showing no growth, so
we aren't sure what is going on. His heart rate is still all over the
place, but hopefully it will be better regulated as he gets more
normal doses of his atenolol and digoxin.

Pray for wisdom for the cardiology team. They all kind of seem to be
on different pages when it comes to Chi. Last week's doctor thought he
should be weaned from the atenolol all together. This week's
cardiologist thinks we need to go up on the atenolol and start weaning
the digoxin. I pray they can figure Chi out, this trial and error
stuff isn't working for Malachi. Hard to watch.

Also, we're just physically tired. Can't even begin to fathom the
tiredness that lies ahead when he us actually home with us.

2 comments:

  1. You are in our thoughts and prayers, daily, Marissa!

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  2. Marissa,
    Our daughter, Julia Faith, was born November 6, 2009. According to our ultrasound and a perfectly healthy pregnancy we had no reason to believe there was anything wrong with her. Your story of Malachi's birth is all too familiar to me. Julia was placed on my tummy right after birth for one short minute that will forever be etched into my heart, that was the last time I was able to hold her, with the exception of when she took her final breath in our arms. Julia was rushed to the nicu about 8 min. after birth and only lived 12 short hours. She was born with critical aortic stenosis and hypoplastic left heart syndrome. As difficult as I am sure your jouney is, I wish I could say that we were traveling the same road as you, but ours took a different route. We know someday we will be reunited with our beautiful girl again in the glorious presence of the All Mighty! Until then...
    Susan Ashton

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