Well, we met with his surgeon at just a few minutes before 10am. The doc said that if all goes well the surgery would only take one to two hours. 5 1/2 hours later we got a call that they were closing him up. Needless to say there were complications.
But lets rewind for a minute. In one of my last emails I stated what the "final decision" was regarding this hernia. I think I spoke too soon. The final decision on his hernia would be told once they open him up. One of the things we all need to realize here is that on an ultrasound and even a chest x-ray you cannot see an infants diaphragm...it is simply too thin. We knew he had a diaphragmatic hernia because we could see bowels and stomach in his chest. What we did not know is that Ethan did not have a diaphragmatic hernia, he had a hiatal hernia. I will explain the differences as it pertains to Ethan.
Diaphragmatic Hernia - a hole in the diaphragm that allows bowels and/or other things (stomach, small intestines, large intestines, liver, etc.) into the chest cavity.
Hiatal Hernia - you already have a hole in your diaphragm where you esophogas passes through from your chest down into your stomach. This hole is enlarged and allows your bowels and others into the chest cavity.
The doc said that the space between the esophogas and the hole it goes through was large enough that he could stick his index finger through it with ease. If you think about the size this little boy is, a hole the size of a large man's index finger is HUGE!
So the doc pulled the intestines and stomach back through the hole. He fixed the hole and stiched his stomach to the diaphragm muscle with three stitches just so the stomach will not move again even if a hole opens up around the esophogas in the future.
He found that his appendix was not in the right place so he removed it...but we will come back to this.
He took part of his small intestines out to examine them as Tia had told him that he was not pooping. What I am about to tell you is not an exaggeration. I know this becuase the doc took two pictures of his small intestines that he gave to us to keep. Ethans meconium (extremely thick tarry poop that all babies have when they are first born) was impacted at the end of his small intestine just before it meets the colon. It was so severly impacted that it was dilated more than 6 times it's normal size. It was backed up for more than 6 inches. Could you imagine being constipated so bady that your small intestine was streached 6 times it's normal diameter for more than 6 inches. Think of how much that would hurt you. Now think, that was in a 3 day old infant. Can you imagine how much pain he must have been in? I can't!
Well, the doc wasn't sure why he wasn't passing his meconium. He said there could be three possible reasons for this. There is no nervous activity at the end of his bowels, therefore his body is telling the bowels to push it out, but it won't go. Because it is not working. Well, he sent the appendix off to the lab to be tested to see if there were nerve cells in it. If there were, then we would know that his pooping nervous system is working in full swing.
The second reason, he said, could just be a random act of nature. something that was out of our control, that we fixed and will have no other problems or complications in the future.
The third, and most likely is that his body is not secreting enough of the liquid that lubricates the intestinal wall. So now his poop is stuck to the intestinal wall. We still need a blood test done to determine this, which is being drawn today (tuesday), but a common occurrence with this "sticky poop" is Cystic Fibrosis. The doc says that the chances of Ethan growing with Cystic Fibrosis is 70-80-90 percent. He told us to not get so ansy about the Cystic Fibrosis until the blood test comes back. Hope for the 10-20-30 percent that this is just a random thing.
The meconium that he evacuated from the intestinal tract, he said, was the worst and stickiest he has ever seen. They use a liquid calles something like Mucosamine that allows the doc to soften up that stool and get it out of there. He depleted all of Deaconess' supply of mucosamine (6 viles), and half of the supply from Sacred Heart (8 viles). They pumped almost 1/2 liter of this medicine into his small intestine before they could get any of it to move.
Lastly, last night they tried to put a third I.V. into his bellybutton. Since they couldn't get it, they had to put two P.I.V. lines into his head near each of his temples. I called the nurse last night around 1 am and she told me that the new lines were not doing so well and they may have to find a different solution for these two lines.
So the last thing I want to say to everyone is, we really appreciate all the love and support we are geting from everyone. Please just know one thing. If any of you ask if Tia or I are doing ok. Despite what we may tell you, the answer is actually No! We are not doing ok. But we ask that you keep your prayers up. We do appreciate it, more than you know!
We love you all!
- Kip, Tia, Riley and Ethan -