Wednesday, October 1, 2008


Sigh. Ezekiel isn't doing so well. Last friday (? I believe?) he had laser eye therapy for retinopathy of prematurity (rop) which really isn't that big of a deal--- pretty standard for a premie. They sedated him, put him back on the ventilator (just for the procedure), dialated his eyes, and the opthalmologist did his laser thing. He said it was one of the easiest therapies he had performed in his 15 years of practice. Doing good, Ezie comes back off the ventilator on Saturday. Doctor Lefkowitz (sp?), one of our favorites, says that all he needs to do is learn to eat, then he can come home--- maybe 2 or 3 weeks.

Then saturday night (sunday morning) he crashed. He had to go back on the ventilator. It turns out that he has pneumonia and mrsa. I think that the stress of the eye therapy weakened his immune system enough to let these things cause him to be sick (he has had a mrsa colonization for quite a few weeks now, but hasn't been sick from it. A lot of people are colonized with mrsa but do not get sick from it.) So that was Sunday. It's been awful, because to be on the ventilator (it's called a high-frequency or oscillating ventilator) he has to be sedated, otherwise he "clamps down" (he gets stressed from the ventilator and then fights it) and causes his oxygen saturation level and his heart rate to drop, while raising his blood pressure. So no more cute little eyes looking and us, no more little "gas" smiles (I swear they are real smiles). No more wiggling arms and legs. When the sedation wears off, he cries (but makes no noise because of the ventilator in his trekea) and kicks and flails around, and his nurse comes and knocks him out again. I think the saddest thing I have ever seen is to see Ezie cry without making any sound. It just breaks your heart. It's like that crying that children do when they get hurt--- you know, they take a deep breath, have that awful crying look on their face, but everything is quiet-- and then they start screaming bloody murder. It's like that, but the screaming never comes. It's awful.

His mrsa (methicillin-resistant Staphylococcus aureus) is the kind that lives in hospitals, not the community kind. So don't worry, he will be ok. The hospital kind is not nearly as severe as the community kind. He is being treated for both that and the pneumonia and is responding well.

Last night I went to the hospital around 9. At 10:30 he had a "spell" (his stats dropped) that they had a hard time getting him to recover from. I watched as his skin turned grey. They "bagged" him (manually ventilating him instead of using the ventilator) and that still wasn't working. Finally he recovered, but they knew something was really wrong. Immediately they took an x-ray to see his lungs, as they could hear with the stethescope "diminished lung sounds", meaning they couldn't hear him breathing on his right side. The x-ray revealed that he had an air leak in his lung, and a large pocket of air between the outside of his lungs and his ribs/skin. This was pushing on both his lungs and his heart, causing the amount of air he could breathe to be diminished, and making his heart work much harder. They had to immediately put a chest tube in to keep him from dying.   I left while they did this, and called Daniel. We waited for at least 3 agonizing hours in a very cold waiting room as they did their thing. About every hour they came to tell us that it wasn't quite working.  The doctor looked so worried, sad and apologetic- I don't think she believed he would make it.  By the end of it all he had 3 chest tubes. And it worked, thank God.

Finally at 3am we went back in to see him. They had him heavily sedated and they had temporarily paralized him. There was still some blood splattered around his bed, on his sheets. He was perfectly still, and had all this gooey stuff over his eyes to keep them from drying out, as he can't open/close them while he is paralized. There were 2 chest tubes still in (one didn't work so they took it out). He looked just horrible. I cried, and we stayed there until about 4:30, then we came home. Today they have taken one more chest tube out, so now he just has one. We're exausted. It's the next day, I've slept 6 or 7 hours, and I still have a pounding headache.

All this of course means he won't be coming home in 2-3 weeks anymore. Now hopefully he will make it home by thanksgiving.

The good news is that he has been gaining weight. There were about two weeks where he weighed the same--- 3lbs 4oz. Finally he is doing better and gaining weight steadily-- he is up to 3lbs 14oz. He has even still been gaining weight while being sick, which is a good sign. I imagine that he may slow down a little on his gain after this whole chest tube incident. Pray for a quick recovery, pray for him to get well from his sickness. Pray for us, too. We're completely wiped out. I had myself paced for him to be home soon-- now I just don't know how to make it until thanksgiving.

Today he is 8 weeks old. In 2 hours and 58 minutes.


Luanne in Ohio said...

Hi Ezie, Kristin and Daniel -

I'm so, so sorry for everything that all of you had to go through Tuesday night/early Wednesday morning (and the intense days before that, too). We are rallying more people up here (Ohio) to pray. I know God's hand is on Ezie. I'm praying, too, that all of you sense that in a big way.
Love, Mom (of Kristin) and Grandma (in Ohio).

Sarah said...

I'm thinking of you all. I so sorry it has to be this hard. Love and prayers, Sarah

Kristin said...

Thanks mom and sarah :) You guys will be glad to know that he has made it through 31 hours since his chest tube was put in. (they told us the first 72 hours were critical. I was on the verge of throwing up for hours yesterday!) So we are almost half-way done with this bad chunk. God is being good to us. :)

Luanne in Ohio said...

Hi Ezekiel, Kristin & Daniel -

As I write this, you are now about another 8 hours into the 72 hours, so you are more than 1/2 way through.

Ezekiel, I pray thst you are not only stable, but mending, healing, maturing and beginning to thrive again on the inside.

Right now, we can't see what's happening on the inside because the doctors have placed you in a time out so that you can rest, but we know Jesus is right there with you. I pray God's best, His perfect will for you, your mommy and your daddy. His Hand is on you, little man.

Love, Grandma in Ohio