Thursday, May 07, 2009

Woozy Little Boy

Kenny is a little under the weather and will see you soon!
I have one woozy little boy on my hands. Dominick and I were joking that out of all 3 kids, Kenny has always been the goofiest and silliest (don't worry, the other two aren't too far behind him...or should I say "the other three" and include Dominick in that?), so seeing him pre-op under the influence of the medication to get him relaxed made it hard at first to tell if he was even affected by it or just being his normal goofy self. After awhile though it was obvious he was finally getting a little "loopy" as he almost couldn't talk and then talked really, really, rrreeeaaallllyyy slowly and clearly so we could understand the nonsense he was speaking. You know us, we are pretty irreverent in the first place, and so Dominick and I looked at each other and said " if he ever uses drugs when he is older we will know what he acts and sounds like if he is 'stoned'!".

This was far better than earlier in the morning, when he started crying from the very moment his eyes opened as the fear finally set in. He crawled onto Dominick's lap for a bit, then snuggled into mine and I gently talked to him as I tried not to cry myself. There is something that is so vulnerable about Kenny, he has a sensitive nature which touches everyone he is around and makes them feel protective of him...even as HE is busy protecting others. Perhaps it is the younger little boy that still resides inside of him due to his institutionalization and his desire to occasionally visit that little boy who was never nurtured...or maybe it is that he is simply one of the kindest and most thoughtful children I have ever been around, a real caretaker himself in so many ways.

I knew I couldn't add to his dismay, so I decided to just talk openly about his impending operation. I think part of his fear comes from not having things explained when he was in Kyrgyzstan and worrying that people will tell him "it will be all right" just so he won't raise a fuss. From day one we have been 100% honest with him about what to expect. If it is going to hurt, I feel it is important for him to know that. If it is not or will only hurt a little, I am honest about that as well. So for the last 2 years we have been leading up to this moment in our conversations and my preparation for everything from vaccinations to dental visits. He now knows that when I say it will only hurt a little, he can fully trust that. If I tell him it will cause some minor pain, then he has an idea of what that means on "our" personal scale, and that I am not trying to make it sound better than it will be. I was so glad we have taken that approach over the past two years as he sat on my lap this morning very close to losing it and I calmly explained to him what level of pain to expect, comparing it to his broken arm and how bad that hurt at the moment he broke it...but that even he had commented on how it only ached a little a couple of hours later. Using that as a baseline I was able to talk him through an appropriate expectation of what was coming, and he seemed to feel it was acceptable and was noticeably more relaxed.

They brought in his gown to change into, and this funky little pair of G-String style underwear we had to tie on him. Kenny is definitely a LaJoy and has the same quirky (that sounds nicer than "weird") sense of humor that we all have, and so I joked with him about not ever having had the chance to change his diaper when he was little and this being the only time I would ever get to do that!! We all laughed about that, and though the mood was still a bit somber, it wasn't a funereal march as we headed off for the pre-op room. Luckily for us, they had a TV overhead...and the only anesthetic Kenny has EVER needed was a TV, so he was duly distracted at that point and we only had to wait for him to be taken in to the OR, which went quite smoothly with no fuss...of course being "stoned" probably helped immensely with that! Hahahaha! His favorite blankie that Grandma Barb made was with him until that final moment, and was the first thing he asked for when he arrived back at his room. We were so glad he never thought he was too old for a security snuggly and that the blanket so lovingly made for him before he ever got home helped him through this rough spot...and no doubt future ones as well.

Now, for the bad news...sadly, they were only able to do the bone graft on one of his clefts. We were told this was a possibility before surgery, and we had hoped that all of it could be accomplished with one operation so he wouldn't have to go through this again, but due to the way they needed to pull and cut tissue to close the opening in his palate and the need to keep all that tissue healthy with a good blood supply so it was successful and no tissue died off, it was decided that they would graft only one side. He also is a skinny little thing weighing only 64 lbs at 10 1/2 years old, and taking additional bone would have been more painful...they would have gone ahead if it weren't for the blood supply concerns but taking both facts into account I think they made a wise choice. However, now we are looking at yet another surgery perhaps within the next year, to complete the 2nd phase of the bone grafting.

If we have to have another surgery, well, Shriners Chicago is unparalleled. I doubt I could ever adequately describe the level of care here...but I will try. This is not a "hospital" in the traditional sense of the word. This is a place of care and concern for the physical body as well as the emotional and spiritual parts of a child. In the past couple of days, there have been activities scheduled for the kids such as crafts, etc. There has been someone visiting with rehab animals and children were able to play with a dog and see it do tricks. There is a fantastic outdoor playground along with an indoor one with an eye towards adaptive items like swings for big kids that strap them in tight and ramps everywhere galore. EVERYONE...and I do mean everyone from janitorial staff to security guards to kitchen staff on up exudes a warmth and sense of care that I have simply never seen anywhere else in my life. You know how supposedly Nordstrom's has customer service that is second to none? Well, multiply that times two here and you will only have scratched the surface. We have had people walk outside with us to point out where to walk to a local store, seen orderlies giggling, teasing and playing with kids in the cafeteria, been the beneficiaries of the widest smiles on the faces of every single person who has cleaned Kenny's hospital room, and not a single time has anyone even come close to being less than gracious and inviting as we enter their "home" here.

I was trying to think of what this all reminds me of, and I finally figure it out...when we moved from prickly Southern California where you are always kind of watching your back and avert your eyes out of habit, and then found ourselves living in rural Colorado where we were amazed at the "Colorado roadside wave" where it was considered downright impolite to not at least lift a hand in welcome to strangers driving was a bit of culture shock. How sad it is that being here and having simple kindness and warmth shown during a difficult time should be so amazing to us, it speaks to the decline of our society that this stands out as extraordinary...but it certainly does.

There are men in Shriner's fez's walking around all the time, a strong reminder to us all of the dedication necessary to create and fund a place like this. Say what you may, laugh if you will at their funny little hats, to our family those hats now symbolize love, care and a miracle for us. We have a long road ahead of us with Kenny's cleft issues, many years ahead of visits to Shriners here in Chicago. With this first surgery, it will no longer be a place we visit filled with dread, but instead will provide us with a sense of security that despite the painful yet necessary procedures that must be endured, there will be those who will walk us through it all and provide a big smile and a large dose of concern and skilled care that we would find no other place.

As I write this, Dominick is with Kenny in his room. It is dark and quiet, and he is resting well. As he came out of post-op, all he wanted was Mom...he wanted to hold my hand, to know I was there. I simply can not imagine what this was like for him the first two times he had surgery in Mom and Dad, no arms of refuge when he was scared and feeling alone. When I think of that, today doesn't hurt my heart nearly as much as reflecting on his surgeries performed when he was younger. He is in very little pain right now, quite drugged up and feeling grooooovvvvyyy ;-) Over the next couple of days the pain pump delivering medication directly to his hip will be removed and I expect that will produce significant soreness. His mouth is pretty swollen and he will be on all liquids for quite awhile. But the physical boo boos will heal. I had no idea how much this experience would move him forward in other kinds of healing.
I hold that strong, firm boy-man hand in mine, and I so easily can see who he will become someday. Kenny, you are on your way. When I say that I am not referring to your lip or your speech. No, this is just another step in your growth as a person, in your seeing yourself differently, in your gaining even more confidence in who you are as we tackle your physical issues one at a time...and more importantly as you learn to lean on the fact that your parents and brothers love you dearly and you will never be alone again, Ever.

Thank you so much to all of you holding us in your hearts right now. Thanks for the travel snacks and entertainment items given before we left. Thanks for the packages that were sent here in anticipation of Kenny's surgery, to distract him and comfort him. A special thanks to the many, many people who love all our sons and are caring for Josh and Matt while we are here so that we may focus fully on Kenny knowing our other beloved sons are safe and with those who care so deeply about them. We have had many people over the last few years shake their heads in amazement saying "I don't know how you do it...I never could.". What we see and yet can't explain articulately is that "we" aren't doing it...God is through so many people and their support. Those of you who read the blog and encourage us daily, those who show their love for us and hopefully know how very much we love them back...our friends here who have transported us, fed us, given up their car for us, and visited us last night with a deck of cards and a smile ready to keep us company...our church family without whom our life would be dreadfully empty and without whom we simply wouldn't have as much joy in our lives...our immediate family who has offered long distance prayers.

We aren't doing a thing here...God is through all of you.


Lindsay said...

So glad to hear that Kenny is safely thru his surgery. Thanks for taking the time to write such a beautiful update.

Anonymous said...

Happy to hear all went well yet sad the whole thing couldn't have been completed! Thanks SOOO much for keeping all of us who love you so much in the loop. You are troopers - tell Kenny he is a HERO!! Know that my thoughts and prayers and hugs are there with you in the hospital! Sounds like a wonderful place and I so appreciate all that they are doing for you while you are there! Love, Miss Joan

Anonymous said...

Thanks for the update - have been "haunting" the blog all day - hugs to you all. It sounds like you could not be in better hands...what a relief for you all.
Hugs from LV

Lori said...

I am so, so, so, so glad he has his mommy and daddy with him for this surgery...I just teared up at the thought of his other surgeries without you. Then, again, the resilience children have is what probably stays with him is you there now.

Glad he's doing all have been in my prayers all week!!!

Hilary Marquis said...

You are right, that hip is going to hurt. When I had my spine fused they took the bone from the back side of my hip. That incision hurt and ITCHED worse than the one that went the length of my back! Be warned...he's gonna want to scratch it because he can reach it. Glad things went well and that you are being so well looked after at Shriner's. We will keep praying for you all. Give our love to Kenny.