Wednesday, July 16, 2008

Used To Bad News

For the most part Joan and I drove home Monday evening in silence. Even though I'd hooked up the portable Sirius satellite radio we never once tuned it on. We had a lot of information to digest and whatever small talk between us was trying to make heads or tails out of it. Somewhere along the way an old Boston tune popped into my mind which I knew would become the title of this post.

For the most part Ben is fine although he's not quite back to baseline. For those of you living outside the world of special needs I'm certain you are unfamiliar with that term. Consider "baseline" as a word we use for "normal" even though nothing is truly normal in our world. Normal (baseline) for us means Ben is unlikely to have a profound seizure, doesn't need oxygen 24/7, and we don't have pay attention to where the Ambu bags are located. The fact of the matter is that we left normal at the door early Monday morning.

You will notice that this entry is sans photos or images. We do have them but they might be a little disturbing to some folks. It's not that they are gory or graphic in any prurient way, we just know that certain people aren't used to looking at someone else's innards. With that said the images presented to us from Dr. Parsons were quite amazing. If you would like to see them then e-mail me and I'll try to get them to you sometime next week.

The length of our stay in Charlotte was entirely our own fault. Even with a reminder from Nurse Vicki last Friday, Joan and I made the mistake of leaving behind Ben's oxygen gear. We were so certain that Ben wouldn't need it that the thought never even crossed our minds. So while we were sitting in the post-op room waiting to be discharged and praying Ben would finally keep his oxygen saturation level somewhere close to baseline we were busy riding that wildest of emotional roller coasters - the one called Guilt.

To make a real long story short Joan contacted Ben's equipment supplier in Greenville who then got in touch with their Charlotte office. After a combination "Who's on first/You can't get there from here" routine that lasted for about two hours (cell phone service is always blocked within the bowels of a hospital) we knew O2 was on its way. Thus began another waiting game. The guy delivering the tanks eventually found us on the surgical children's floor where Ben became the hospital's shortest admit patient. Ben's nurse was literally filling out his admittance and discharge papers at the same time. Our insurance provider is going to have a dandy time sorting through that mess.

So what did we find out? Several answers to some questions we've had for a long long time and none of them are good. Neither are they disastrous. The bottom line is that unless there is something short of a miracle, Ben will be wearing a trache the rest of his life. Using Dr. Parsons' words, "Ben is now considered a long-term trache patient." The only positive spin we can put to it is that should Ben require another hospitalization due to serious illness he has the best possible avenue to his lungs.

There are two primary reasons for it. Dr. Matthews was asked to participate in the procedure for one purpose only: find the reason for the severity of Ben's nasal curvature. During our office visit last month he suspected that it was related to one of the more profound anomalies Ben was born with. Indeed he has a deviated nasal septum due to his cleft palate (scroll down the page I've linked to read more about it). While his right nostril is pretty close to normal the left side has deviated so severely that it is completely blocked.

One of the things we've held back from most of you is that the deviation can be repaired but it isn't easy. Ever know someone that got a nose job? Essentially your nose is broken; nay, actually shattered. Dr. Parsons described it using a grotesque but very accurate analogy. The bones end up the consistency of the shell removed from a hard-boiled egg. The nose is then reformed by hand like you would mold a piece of clay. Had we discovered the deviation was preventing the removal of the trache then Joan and I would be facing a very difficult decision. But that is not the case.

The primary reason the trache will remain is that Ben's vocal cords are paralyzed. In Ben's case the paralysis is considered partially closed. Because the vocal cords are located just above the trachea his airway would be compromised should the hole be closed. We got a pretty good example in the post-op of what could (and would) happen the first time Ben faced something like a cold without a trache. One other issue related to this find is that Ben will always receive his primary nutrition via his feeding tube. Always.

So we are unhappy and very disappointed with the outcome of our trip. We'll readily admit that we were very excited about life without trache changes, the Passey-Muir valve, and endless suctioning. We're even more disappointed that Ben had such a bad reaction to the experience. At the moment he is still on a small amount of oxygen. Yesterday after one particularly bad seizure I had to bag him. Basically it's the same as giving a normal person mouth-to-mouth resuscitation. And there have been fewer of those giant smiles he is known for.

There was one moment in this whole experience though that told us the most about Ben. For the first time ever Joan and I were without a shadow of a doubt convinced that Ben is far more advanced cognitively than some people would give him credit for. We've seen enough in our household to know that but Ben understands one of the most basic of human emotions...fear.

Right after Parsons prayed with us (how many surgeons do you think does that?) about the procedure, he announced that he was ready to take him back. Joan and I both turned to Ben to find him staring at me furiously shaking his head back and forth telling me no. There was a look of panic on his face that I don't know I've ever seen from him before. Our hearts broke at that moment and something inside me told me we shouldn't be there.

Six months from now Dr. Parsons wants to have another look at the vocal cords. You can bet Joan and I will think much longer and harder about any further procedures at this point.

Update: Dammit. We just had to move Ben to his "sick plan." He's now running a fever and has some pretty nasty secretions from his trache. I should've followed my instincts and just carried him out the O.R. door Monday. The nightmare continues...


kimmyk said...

oh my heart breaks.
i'm so sad about this and my i can't tell you how this makes me feel and i have never held that little mans hand before.

just your words of him shaking his head no knocked the wind right out of me. i can't imagine.

i'm sure you and joan are tired and again, i can't imagine what it must be like to watch your child go through such an agonizing surgery and experience.

my heart goes out to your family and that sweet lil' boy of yours.

i'll be thinking about your family.

-hugs my friend.

Nurse Betty L. Boop said...

Wow guys, I'm so sorry that this trip was scary and disappointing. I feel bad because I did a lot of talking up the trache removal.
:^( Please know that I'm sending lots of love and hugs and prayers your way!

PS-I was going to stop by today after kickboxing, but with the heat so bad, I stunk to the high heavens by the time I got done. I'm going to try for sometime next week though....stink or not ;^)

Anonymous said...

Ben, Joan and you are in my thoughts and prayers.

carmilevy said...

I'm praying extra hard that you make it through this crisis and put yet another challenging chapter behind you.

Your strength amazes me, and I have faith that it will continue to carry you through. Please know you're not alone: we're all here with you in spirit, hoping, waiting, willing, praying.

Conni Tögel said...

awww, shucks (putting it mildly - you know I'd use different language in a conversation with you) - not at all the outcome hoped for...I'm soo sorry.

But him shaking his head just goes to show what all of you have accomplished over the years of loving him - don't let the bad news distract you from that fact: you've still come a looong way, baby, even when the outcome this time was not what was expected and is disappointing.

I hope he feels better REAL soon and can get back to spreading the joy that he is around himself. Prayers are still happening.

Gretchen said...

Darn it all. Sometimes our kids can't catch any break. I'm sorry for the outcome and for Ben being scared and then getting sick on top of that. Why do you think he got sick? Just the stress of the surgery? Anyway, know you're thought of, if that helps at all.


we_be_toys said...

Oh honey - my heart is breaking for all of you, especially Ben. I don't know what else to say, but I'm thinking of you all - be well.

Kelly said...

Sending some much needed prayers your way. Keeping you in my thoughts as always and praying our boy is feeling better soon!

Kyla said...

I'm sorry the news wasn't what you had hoped and that Ben didn't handle the procedures easily. Poor guy. Poor you (and Joan!), too.

Anonymous said...

Well, darn on all accounts. Jakie would have been a lifetime trache patient too--his vocal chords were severely scarred from acid reflux...go figure, from a kid who never once ate by mouth!

I'll be thinking of you all!