Monday, September 28, 2009

Update on Ethan...

Ethan hamming it up for the camera - 5 mos.

Ethan came through the catheterization in August with flying colors. It was pretty funny when he woke up after the procedure he immediately started screaming at the top of his lungs (according to the nurses) which is just so Ethan. Turned out he was still hungry and was mad at them for making him sleep instead of eat. So they fed him a bit and he was fine. He was pretty cute then because he looked awake but if you really looked in his eyes, you could see that he was still way out of it.

They got a good look at his heart and devised a plan. The good news is that he will only need one open heart surgery! The plan was to operate on his heart at the end of October but as with most "plans" we make, God has other ideas. Ethan has a craniosynostosis which means that the sutures in his skull closed too early restricting brain and skull growth. He has no soft spot on his head (its closed) and everyday his head becomes more and more misshaped. He already had a CT scan and his brain is in the shape of an hourglass. His brain looks like its being squeezed. They say that his brain condition looks good for now which is good news. But we need to fix it soon to prevent any injury to the brain and also because the longer we wait, the harder his skull gets. Apparently once his head gets too hard (usually after 6 months old), the surgery to correct the problem becomes even more complex and extensive. The neurosurgeon wanted to operate immediately (this was at the end of August) but wanted to run it by cardiology first. Of course, they said no way can he go through cranial surgery with his heart unrepaired. So, the heart surgery has been moved up and the neurosurgery will follow within 10 days or as soon as it is safe.

The date for the open heart surgery is Oct. 8, 2009 with another catheterization the day before to take care of some things the heart surgeons will not be able to reach during surgery. Hopefully he will recover well and then the neurosurgeons plan to do his cranial surgery on Oct. 19th. He will not come home in between surgeries and will be in the Cardiovascular ICU in between. So we are looking at about 2 weeks in the hospital. We have family coming down to help with the other kiddos while we are focusing on Ethan and we are so thankful for their generous giving of their time.

SO! I will be updating alot more in the next couple weeks so you can know what to pray for specifically but it doesn't hurt to start those prayers now. I am still a bit numb to all that is going on with him and really still in a bit of denial that its going to happen. We have been so blessed with such good news up to this point regarding Ethan's health. We really have had the "best case scenario" all along. Things could have been soooo much worse. But reality is knocking at our door as I call the blood center to find out how to donate for my son who will for sure need transfusions during both procedures. Its hard to imagine that he needs these surgeries just to survive but the cardiac surgeon reminded us of that fact. Ugh!

I know God is all over this but we would love for ya'll to pray for our little "Eef." He is such a strong little guy who is indeed a fighter (not to mention quite a charmer).

Thank you, friends! - h