Thursday, January 5, 2012

A Brand New Man.....

I walked in to Noah's room today to find him sleeping on his tummy. This is something he hasn't done for at least a month. When he woke up it was pure joy to watch him smile his contagious smile and kick his legs for all they were worth. He truly looks like a brand new man! It looked like he wanted to sit up, lay down, and roll over all at once! I think we are in for a whole new, and very exciting reality! I don't know that Noah has really felt well since arriving here in Cincinnati in September. He has had regular tummy troubles and I think that they were all symptoms of the increasing blockage in his intestine. We are so excited about what this will mean for Noah!

So, tomorrow at 9:30am he will receive his last antibiotic through his IV line, they will take the line out, and we will GO. HOME. You might hear our hallelujahs all the way from Kentucky!!

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.

Looking at love.....

Big sisters rock!

I am reading John Eldredge's newest book Beautiful Outlaw. I am loving it. I think I have always seen Jesus as a one dimensional person, and this book is helping me to see him in 3-D and fully colorized! Eldredge talks about all of the interesting ways that Jesus healed those who came to him -- often different and sometimes in ways that seem just plain weird to me (the spit, the pigs, etc)! But I love the point that he makes..... that even though the circumstances can SEEM weird to us, the TRUTH is that when we look at Jesus, we are ALWAYS seeing love. No theatrics, no cruelty, no random He doesn't always give us what we want.....but he always gives us what we need. As I stood over Noah's bed Friday night watching him shivering in pain, waiting for the x-ray techs to come and get a picture of his lungs because he seemed to be descending into a real respiratory event (event in the hospital is never a good word) I leaned over him, rubbed his hair, and through tears reminded myself that I was seeing love. What peace filled my heart.....Jesus was here, he was holding Noah, this was not a surprise, nor was it unnecessary. Truth is not dependent on my ability to understand it as is a bedrock that I can hold on to when nothing makes isn't a feeling, an instinct, or a theory.......truth is truth. Jesus is love. So, I whispered to my baby that, "This is love." I don't get to see it all here......understand it all......some of it will be revealed to me, and some I won't know this side of heaven. I cling to an eternal perspective vs. a temporal one and more things begin to make sense. The picture is so much bigger than what I can see......and I can trust in the one who sees it all.

Our sweet boy seems to be in a very frustrating holding pattern right now. He was given a suppository yesterday that produced one passing of gas and two barium diapers. We were very excited!! He is not eating anything by mouth yet, and all of his stomach juices (I know...gross right?) are being drained out of his belly so that nothing sits in his stomach. The cycle this creates is that they have to give him lipids (fats) through his IV to nourish him and those lipids mess with his liver. Because his liver numbers are off (although they seem to be improving) he can't have tylenol. Because of the severe dehydration at the beginning of this stay his kidneys were mildly damaged (they look good now) so they haven't been willing to give him ibuprofin. This leaves us with morphine and valium, which also constipate. With nothing going into his tummy he really isn't producing new waste.....and round and round we go. Mommy is working to balance patience and gracious assertiveness. 

SO, the surgeon just came in and told us that we can clamp off his g-tube and see if he can tolerate his tummy juices......if so, we can move to feeding him tomorrow!!! Oh, this is such great news!!! Home is sounding fantastic right about now!!!

Grateful for your continued prayers!!