Sunday, January 1, 2012

Yeah for Dirty Diapers!

Kristin praised me (Keith) a couple of days ago.  Now it is my turn to praise Kristin, in whom I see the reflection of our Creator.

She is a tireless, courageous advocate for all of our children -- especially Noah during this stay at the hospital.  Cincinnati Children's Hospital is a wonderful facility and we know that he is getting some of the best care in the world while in the hospital.  According to US News and World report it is the third ranked Children's hospital in the US behind Philadelphia and Boston.  However, nothing is perfect and this stay in the hospital has been very frustrating mainly due to poor communication.  In some cases the doctors haven't been willing to explain their course of action.  "This is just what we do, OK?"  Was the response of one doctor.  In other cases two different doctors are giving different and conflicting orders.  Poor and confusing communication makes is very difficult for parents to be the advocate for their children.

Kristin has finally had enough and refuses to put up with the poor communication when it effects the length of our hospital stay.  Friday night she couldn't get a simple x-ray of his abdomen until Noah started having a respiratory event. She was denied the x-ray without any explanation. Kristin could tell that his belly did not look right and wanted them to see if he was getting "backed up".  If Noah is in pain it effects his ability to breathe so locating and controlling his pain is important.  We would like to avoid him not being able to breathe, if at all possible.

Yesterday, there was confusion between the resident surgeons (just out of school) and the attending surgeon (expert surgeon, the one in charge) on when to clamp off his g-tube.  We had to clamp the g-tube before we could start feeding.  The residents wanted him to poop first.  The attending told us that passing gas was good enough, which he had already accomplished.  Because the residents are the ones who enter the orders into the computer system we couldn't get his g-tube clamped off.  Kristin kept pushing for it, and finally the attending showed up and the g-tube was clamped right then.

After they clamped off his g-tube, Noah's tummy started to distend.  He started to get uncomfortable again.  This was followed by resident surgeons telling Kristin that this is why they didn't want to clamp his g-tube.  And then Kristin and her efforts were vindicated.  He passed gas and pooped.  He almost immediately started feeling better.  This is when we can say "Yeah for Poop!"

This morning they started giving him some plain Pedialyte by bottle which he didn't enjoy.  He did manage to drink some apple juice, which he took but not with the enthusiasm he has shown for formula.  We just pray that he can take enough of the Pedialyte today either by mouth or g-tube that we can give him formula tomorrow.  The residents are now insisting that he be fed by mouth and not g-tube in order to transition to formula.  Kristin is again insisting that this is not necessary.  We can bring him home on a g-tube feed and then transition him back to a bottle. We've done it once before, we can do it again.

Each step brings us one step closer to have Noah come home.  Home is very important to ventilator babies.  The hospital is a big incubator for germs.  The longer Noah is at the hospital, the greater the chance that he could catch a major illness such as RSV.  We thank God for the care that we have received at the hospital, but also pray that He would bring this stay to an end.  And I thank God for my wonderful wife, who is tireless in her effort to ensure that Noah gets the best care possible.  Kristin spent last night at the hospital and didn't have a laptop, so I Keith have written this update.  I have also made a few minor adjustments to the blog and will continue to tweak the look of it over the next couple of days.

1 comment:

  1. Hey there Keith and Kristin,

    The blog looks awesome! Thank you so much for praying for our Lina too! We continue to pray for you all and for NOAH to come home! I'll keep checking...thanks for caring about our precious LINA!! I had to show Brian your blog!

    with love in Christ dear friends...steph