Thursday, October 20, 2011

Family Life | Eye Surgery

We've survived eye surgery. Didn't realize a few days ago what a big deal that would be. But it's a big deal. We had a ton of friends and family praying. Not sure how we would have managed without being lifted up in prayer!

My son has Duane Syndrome. That's not curable. But many of the side effects of it can be managed and even fixed at times. Daniel has already been patching his strong eye to help strengthen his weak one. If a weak eye is left un-exercised it eventually shuts down. Yep, it stops working. Thankful we realized he had a problem before it was impossible to correct some of the damage. He's been patching up to six hours a day. Tricky to do when you want him to be able to avoid patching at school. First grade isn't an age where kids want to stand out and get a lot of questions and possibly teasing. Still, we've been faithful, sticking that patch on the minute he gets off the bus and patching in the morning before he ever gets on the bus, too.

The day after Daniel's last appointment the doctor called. He said surgery was going to be necessary. They were going to need to go in and cut part of the muscle to loosen it and give Daniel more peripheral vision. (He can't see to the side without turning his head.) So surgery.

I had little idea what to expect. There wasn't a whole lot written about kids and this kind of eye surgery that I could see. I didn't feel like I even knew the kinds of questions to ask.

We got through it and I pray fervently that we do not fall amongst the 20% who have to do it again.

The night before we prepared by taking the girls to Grandpa Bill and Grandma Grete's to spend the night. Then we took Daniel out to dinner. We went to Five Guys, his first time. He LOVED it, completely consuming a double cheeseburger with gobs of fries. Loved it. Then we really surprised him and ended up at The LEGO Store. We let him pick out a LEGO set to look forward to during his recovery. He picked out the Space Centre. Good choice.

We left the morning of surgery about 8:15. Eric pulled out his GPS software (he loves any excuse to use it) and we left for Seattle.

We arrived.

Everyone was in good spirits. Daniel was almost excited. They even had building blocks in the waiting room. After filling out paperwork, which included consent forms, he got busy building a train.

Then they called us back. He was NOT happy about putting on the required pajamas. I had to dress him as he fought me, crying that he did NOT want to. I won the battle because I had to. Then the three of us went and sat in the prep area. An attendant asked us some questions, then a nurse came and talked to us. Then the doctor. The doctor needed to examine Daniel before surgery because he'd taken a fall on his nose two days before. (We took him in and it wasn't broken, though it was swollen.) Then the anesthesiologist came in. He was wonderful, explaining EVERYTHING that would happen to Daniel. Very good guy. Learned he had a son a couple of years younger than Daniel, I am pretty sure that helps. Then we walked him down the hall and had to hug goodbye. Daniel FELL APART and had to literally unwrap his arms and shove him towards the nurse. NOT easy to do. All my mommy feelings are screaming at this point.

Eric held me hand and we walked back to the waiting room. I cried. He held my hand. We waited. Finally we moved over to a table where there was a puzzle. I needed a distraction. Every time the door opened and someone came out we looked up. It seemed like forever before the doctor came out and said everything went well. He said they would come get us when Daniel was coming to.

Nothing could have prepared us for that. When we went back the nurse was trying to hold him as he was howling. She instructed Eric it pick him up and take him to the recovery chairs. (Yes, chairs, they just had these awkward chairs that were supposed to be recliners or something. Totally wrong for kids and parents.) Daniel kept screaming and flailing and screaming and flailing. Pain. He couldn't see. Pain. Make it stop. You get the idea. It was as if he was having night terrors. Awful. The hardest thing I have every experiences as a parent to date. I can't count the number of times he asked me to pray that God would take away the pain NOW! He was so scared.

They told us he could leave and instructed Eric to get the car at least four times when they hadn't even taken out the IV. And he couldn't get back into his own clothes until they'd extracted the IV. It would take both of us to get him dressed in this much pain. In addition I was confused by the rushing us out. Originally they said he'd need to eat and drink and keep something down before they'd let him leave, then they were trying to get him out of there as quick as possible.

By the grace of God we got him into the van somehow. They needed their rag back, the one that he was using to cover the eye. All I had was a spare shirt so I gave it to hold over his eye. He screamed and screamed. Eric set up the seat in the back of the van next to him for me. I held his hand. I prayed. I told him I loved him. The only thing that soothed him was music. He wanted Songs from the Playhouse from Tru Mid-week on, loud.

We had to stop to pick up the girls. I called Mom from the van and said we'd be there in twenty minutes and that he was doing really badly and we'd need to make it a fast stop. She was amazing! The girls were waiting in the driveway with all their stuff! She had packed them a brown bag lunch. I'm crying as I type this, I was THAT moved by her thoughtfulness! Every time the girls said anything he screamed he needed it to be more quiet. I tried to reassure the girls that he wasn't feeling good, but that he was going to be okay. (He wouldn't let me take any pictures and I don't know how I could have. I never had a free hand from the moment we went into the recovery room on.)

When we got home we got him to the couch. I called my parents and arranged to bring the girls over. I left.

When I got back home he was up with Daddy putting together his LEGO set! He'd turned a corner! Shortly after one of my dear friends brought us dinner and a gift bag of things for Daniel. He was overjoyed! The distraction was exactly what he needed!

We all slept hard last night. I am so grateful.

The post-op check-up was this morning and he said it looked good. Daniel hasn't complained of double vision, that's a very good sign. We are praying fervently that God guided the surgeon's hand and that a follow up procedure is not necessary! I am so thankful I didn't know it was going to be that difficult going in, and it's a good thing Daniel didn't know either!

God was with us every moment. I cannot imagine what a parent would feel and experience if they did not have the confidence that a greater being was in control and cared about their child.


  1. Ok, I am totally crying. Thank you for sharing!

  2. you made me cry made me remember isaac's surgery. That was no fun. It is pretty cute that both daniel and isacv were made happy by legos!

  3. Tears are slowing down a little now. It takes me back to when my 1 year old had to have eye surgery at the hospital for a granuloma the size of an egg. We will continue to pray that this is the last of his surgeries.
    Love you guys.

  4. My heart hurts for you and Daniel. My girls have never had to have that kind of surgery... But two of them have had their appendix out and Ashley had to patch her eye for about 6 months. She had to have it on all waking hours/6 days a week. She was in 1st grade too. We chose to have her patch free on her PE day.
    I am so glad that things are going better. I pray that Daniel's eye continues to strenthen and will not require further surgeries.
    Patty Hall

  5. Eric and I can only imagine what your family has been through the last few days! I almost made it all the way through this post without bawling but when Daniel was scared to go in to surgery and in pain afterward - the visual of that just rips my heart out! I may need more tissue in the house... You all were so brave! SO thankful this part is over. Praying for healing. HUGE HUGE HUGE HUGS :)

  6. Oh sorry for you and for Daniel....I remember doing somewhat the same thing. once with Noel and once with is hard to do something for your child that you know will hurt them but is for their best....
    Prayers are with you for complete healing...and for your heart :)

  7. I'm so sorry! What a long day. I pray the surgery was very successful and he can forget all of the pain!

  8. Cami, this is so hard! I am so sorry you all had to experience that. We will be praying for a strong recovery and no second surgery. Hugs and love to you all!

  9. I am so sorry. That doesn't sound like the way things should have happened for a child's (or anyone's) post-surgery. I've known nurses to be gruff and rushed, but never that bad. So sorry! That made for a long, hard day for you, but I'm glad you're past it now. (BTW, you were only a mile away from us if it's the place by Northwest Hospital)