Friday, July 2, 2010
Praying for a miracle
I am sorry it has taken me so long to post, it has been a very interesting and eventful week. Well, we did meet our new doctor and he was very good with us. Not all doctors have good bedside manners, this one does. He presented us with the reasons Grayson has apnea as well as what he thinks it will take to get his trach out. The truth is I could not post anything because i needed some time to chew on the information he gave us. It is extremely overwhelming! Honestly he presented us with no good options. Apparently Grayson's jaw is recessed (not bad) but bad enough that surgery is required to fix it. This is a big deal because his tongue sits to far back because the jaw is back, therefor blocking his throat especially when laying down, hence the obstrucion causing the apnea. Now, I knew we were going into a surgeon's office I just wasn't prepared for what he would say. He told us that to correct this problem he would need to break his jaw pull it forward and then put screws along the jawline that would stick out through the skin and every few weeks we would need to bring him in to tighten the screws! I thought I misunderstood at first because that just sounded a little bit barbaric for a 2 year old, but that is what he said. Grayson would wear these screws and also splints on his elbows to keep him from touching the screws for about three months. So that option just stinks! Option 2 is a lip/tongue fusion where he would attach the two together for a few months and hope that the tongue stays forward. He would not be able to take anything by mouth,for either of these surgeries and we just now finally got him to babble and who knows what regession that would take. So that option just stinks! Option 3, wait for his jawline to move on its own which typically happens in the teenage years, which means he would have to keep his trach for the next 10-12 years (not an option)! I have to step back and try to wrap my mind around this situation, basically we have to decide how badly we want him to live a trach free life. I have always said that I would do whatever it takes to get him off of that thing, but I just simply wasn't prepared for this. None of these are good options or a guarantee. I know that God has a plan, I just was praying for a different (easier)one than this. I read this quote from a gentlemen talking about God and it read like this, "When you are down to nothing, God is up to something". I believe that God is up to something for our son, and I have the faith of a mustardseed, and I also know that ALL things are possible through Christ who gives me strength, and i believe in MIRACLES!!! I just pray that I can remain strong and not feel the feeling of defeat from this. We need prayer as his parents who are supposed to make all the tough decisions that he can not make, this is the toughest so far. So, I ask for prayer again from all the folks who read this blog. We are certainly going to need it.
Posted by nicki hill at 9:43 PM