Thursday, May 12, 2011

Before, After, and In Between

The night before David's surgery, I gave him a nice long bath and took a lot of pictures of him. I don't ever want to forget him this way...

One last picture while he is sleeping...

First post-op picture - still pretty groggy.

Cuddling with his Project Linus blanket while watching a little TV. (I love it when his big toe sticks up like that...) Note the soft arm restraints to keep his arms from bending at the elbows.

These photos were taken less than two weeks after surgery...

Such a beautiful little mouth!
Look at that sweet smile for his Mama!

I'd like to share the story of David's surgery for anyone who might be interested in some of the details, particularly families who may be considering the adoption of a child with a cleft lip or who are preaparing for their child's surgery. I also want to be able to remember some of the smaller details someday...

David and I arrived at Shriners in Chicago bright and early on Thursday morning. When it was time for him to be prepped for surgery, he put on his hospital gown, and was wheeled into the pre-op room where he was given some "sleepy juice". The nurse told me it would work in about 5 minutes and he'd get really groggy or loopy. Instead, he got agitated, stood up in the bed, ripped off his hospital gown and started demanding books to read! After about 30 minutes he began to settle down, but he was still alert as they wheeled him into the OR - the scared look on his face as he rolled away launched me into an embarrassing "ugly cry". Fortunately, Nurse Ruby was a sweetie and just handed me tissues and gave me a hug...

My sweet friend Dina came and sat with me during the surgery itself. Dina is one of those friends you can just talk and talk with for hours and it feels like just a few minutes. We ate lunch and caught up on each other's lives, and instead of obsessing about where in the procedure David was, I was able to just think about him briefly from time to time. The surgery took about 3 1/2 hours. I was finally brought into the recovery room to see him as he was waking up. Poor little guy was groggy and disoriented - and thirsty! The nurse showed me how to give him little sips of juice with a syringe. I was so proud of myself - this incredibly squeamish mom didn't even flinch when I looked at his lip. It really wasn't too awful looking, and we were able to keep the pain at bay with just Motrin.

Once he was awake, he was going to stay awake, and he didn't go back to sleep until well after 8:00 that evening. He wouldn't let me out of his sight, so I missed dinner and had to settle for a bowl of Cheerios, some peanut butter crackers and a Coke that they had in the kitchen on the floor. My little guy was ravenous, and he downed three tubes of GoGurt, a cup of apple juice, and a can and a half of Ensure. His arms were in soft restraints that kept them from bending at the elbow so he couldn't touch his incision, so I had to feed him everything from a syringe. That night, I had an arm chair to sleep in in his room, but chose, instead, to lie on the bed with him. As with any hospital, his temperature and blood pressure were taken every. two. hours. throughout the night. He woke up every time. So did I.

The next morning, he was tired, cranky, and hungry. He was fully alert and wanted to run around. At one point that morning, he wanted to run outside his room in the hall, and when I blocked the door, he had a complete tantrum. Later, we went to the play area, but I was scared to death that he'd trip and land on his face. Lunch wasn't much fun. He was tired of yogurt and juice and soup and wanted some food he could sink his teeth into. We were given the OK to go home that afternoon, but when Al and the girls showed up to help me get him home, he completely fell apart and had another tantrum. I was really starting to worry that I would have a hard time taking care of him once we got home and was afraid to leave the security of the hospital environment with so many people helping me out. Our departure was stressful and hurried instead of being an opportunity to say goodbye and thank everyone for their care.

As an aside, let me just say that the staff at Shriners were just wonderful. Everyone was so attentive and made sure that not only David was taken care of, but that I was, too. Volunteers had left a gift of little toys and candy for him, and he received a cuddly blanket from Project Linus.

Once home, the next week was devoted to trying to keep David fed and relatively quiet. We were told that he would have to be on a full liquid diet fed by syringe to avoid the risk of injuring the incision with either food, utensils or fingers. Needless to say, by day two, David was demanding a ham and cheese sandwich. Or at least some strawberries NOT blended into a smoothie. By the end of the first week, the only thing I could get him to eat was thick chocolate milk shakes. I continued to cook meals for the rest of the family, but chose to eat soups and smoothies with him - I lost a few pounds that week! We were also instructed to keep the arm restraints on for two weeks. He did very well until the end of the first week when he started to pull them off himself. Underneath, his skin had gotten very dry and scaly, even with a long-sleeve tee shirt between his skin and the restraint. And his arms were very itchy. He was on antibiotic for a week to avoid infection, and he took Motrin for the pain, though he never actually complained that his lip hurt (for which I am grateful).

The surgeon wouldn't know until the operation was actually underway whether he would be able to do any work on David's nose at that time, or wait until a future surgery a couple of years from now. As it turns out, he was able to do some work on the nose, and it looks beautiful. Silicone nose tubes were sutured into David's nose for the first week to help the nostrils keep their shape during healing - they were removed at his post-op visit a week after surgery.

The surgeon was very pleased with David's healing one week after the surgery, and in addition to removing the nose tubes, announced that David could eat anything but very sharp foods (think chips or pretzel sticks), and he could stop wearing the arm restraints. Also, instead of having to stay home from school for two weeks, he was able to return after only one week. He has been excused from Phys Ed for two weeks after his return to school as a precaution.

David's sleep was most definitely messed up that first week home. He would wake up every night screaming for me, but then when I came into his room, he screamed for me to get out. He threw things and would try to hit me. I knew to expect "sleep disturbances", but those long days at home all day with him were especially tough to get through after such difficult nights. After a week, he really seemed to do much better - I think it could have been a combination of the effects of anesthesia, discomfort from surgery and not being able to suck his thumb, not to mention any feelings of fear he may have had.

And so here we are, three weeks post-op. David is back to school, totally back to his old self. He is so proud of the way he can make the "B" sound now! And I think that because he is even easier to understand, he is gaining all kinds of confidence in his speech and is talking up a storm! He can really pucker up and give huge smooches now. And I notice that people don't stare at him any more. It's funny - I still find myself preparing for a stare or comment as I see a stranger approaching us, especially young children, and yet, it doesn't happen any more! I think that's especially good for David.

Our next step is a checkup with the cleft team in the fall, and then he will probably have some sort of revision surgery when he's school-age (around 7 or so) to improve the "look" of his lip and nose as he grows. That's about it. Our "Special Needs" child no longer has his special need. He will continue receiving speech services through the next school year, but at the rate he's progressing, I doubt he'll need much more after that. And that's it. For all intents and purposes he's just a typical three-year-old boy. And now, on with the business of life...


lisa said...

David was totally adorable BEFORE the surgery. Just look at him. He is still adorable!!!

Many praises to God.

Love you, Lisa

Mindy said...

He is just such a sweet boy!! And he has such an amazing mama:)

Looking forward to spending more time with you both...and those beautiful girls as well:)

Bobbi said...

I am in tears!! He is simply gorgeous. I thought the same before, but I am so happy for you all that the world will see him as the same!! They always should have, but as you know, that's not always the case.

You are one tough mama!!!