Wednesday, September 14, 2011


Sorry for the delay in updating.  Yesterday was a very long day and we were all sound asleep the first chance we had.

First I just have to say that Tegan is a trooper!!!  We went up the night before and stayed in a hotel so that we didn't have to drive a real long distance the next morning.  We were walking in to the Children's Hospital at 6:30 AM.  This was the most efficient hospital I have ever been in (and I work at a hospital so that is saying a lot)! 
Tegan was really brave and very sweet to all the staff that came in to do various things to him in preparation for his surgery.  He did start to get really thirsty and just decide he wanted to go home at around 9:00 AM but they came in at around 9:30 AM and gave him some "Joy Juice" (like a Valium for kids) and he was good to go.  He didn't even cry when they took him from me.  They put him to sleep with a mask and then put in the IV so I was thankful for that.  Surgery started at around 10 AM and they called to say they were finishing up at a few minutes after 12 PM.  He was in recovery for a little while after that and then they finally brought him to us.  I was devastated when they wheeled him in and by the look on Paul's face, I thought he was going to throw up at any minute.  As soon as Teg heard my voice he started to cry.  Not a hard cry but this little painful and heartbreaking cry.  He just kept saying "they stuck two things in my eyes" and "please get this stuff out of my eyes with a paper towel".  He was begging for Paul and I to help but we felt very helpless. 
But like tough little boys do, he started to bounce back.  Now he is by no means OK but his attitude is GREAT!  He has been talking a lot and playing with whatever toys we put within arms reach. 
His eyes have been bleeding since the surgery but that should slow down soon.  I have to constantly clean his eyes and he doesn't like it.  He has just started to barely open one eye.  So for over 24 hours he has just laid there with his eyes closed and refuses to open them.  The eye he is opening looks HORRIBLE.  There is a huge blood clot just sitting in the inside corner of that eye.  Everything is so bloody that I can't really tell which way the eyeball is actually pointing.  He isn't really opening it up enough for me to see it but at least I know he does have vision in that eye which eases one of our fears of the risk of him losing his vision.  He still refuses to open the other eye at all so hopefully that will change very soon.  He isn't really eating anything but he is drinking juice, sprite and "Banilla" milkshakes.  I slept with him last night and he did pretty good except a few times when he would wake suddenly and couldn't get his eyes open, he would start screaming for me not realizing that he was literally screaming in my ear.  Talk about a wake up call. 
He can not touch or rub his eyes at all.  I thought that was going to be hard to prevent but once we told him it would hurt if he touched them, he hasn't even tried.  We have to be very cautious for the next two weeks b/c infection is the biggest risk of this surgery.  The actual surgery was detaching his eyeball from all four muscles and placing those muscle back to his eyeball in a different place.  He has lots of stitches on the sides and backs of his we can't see the stitches but they say he can feel them.  They say that it feels like having sand in your eyes so you can imagine how aggravating that is.  They also say that it feels very tight to him.
Although the surgery went well there is no way to tell if it was a success or not at this point.  We are praying hard that it is b/c I just don't think I can do this to him again.  It is awful.  The point is that he would have to turn his eyes to the right to make them be still so he could see before he had the surgery.  Well this surgery took his eyeballs and turned them to the left.  So when he does open up his eyes, they aren't going to point in the right direction right away but within a few days he will start trying to pull them to the right (like he always has) to be able to see and that is suppose to bring them to the front .  It is scary b/c there is nothing really for her to go by to know where she should place the muscles back.  She just has to do it and pray that they will be right once his brain readjust.  So the next few days he will hopefully start opening his eyes, they will straighten up and his brain will adjust to the new point.  A LOT of scary stuff!!!!  He will be able to function again soon but his eyes will heal from this for 6 to 12 MONTHS!!!  So if she didn't get it right this time and he has to have it done again, it will probably be a year before she can do it again...I'm still unclear on that.  I am worried that what if it works in one eye but not the other and his eyes look really off from each other....which is possible.  There are lots of what ifs with this surgery and we definitely have fear that we will end up feeling like we made the wrong choice.  But we feel like we had to put this in God's hands and do everything we could for our little man.
There are lots of prayers still needed....speedy recovery, for him to open his eyes, the bleeding to stop, no fever, no infection, that his eyes will do what they should at this point, and that he will one day forgive us for this horrible pain and surgery we have put him through! 
Thank you all so much for thinking of us and praying for us.  I know that I could feel the prayers and peace all day yesterday b/c I am normally very anxious but I never got that way at all yesterday.  Please continue to pray for Tegan and lift him up....this surgery is no cake walk!!!

1 comment:

  1. Praying for Tegan and all of you. What a tough little guy. x