So yesterday was pretty rough.It started the night before yesterday, really. I was sitting in the NICU holding Mikey when the attending Doc came over and pulled a rocking chair with her to sit with me. I could already see the fact that she intended to sit down was a sign that the conversation wasn't going to be any fun.
So, she informed me we needed to do both the G-tube as well as a tracheostomy. Essentially Mikey isn't able to handle all of his secretions as well as any reflux from his belly. He isn't gagging when he should and protecting his airway as most babies would. I've come to think of his issues more as a basic wiring problem than damage. Perhaps I'm naive about it all right now - but I just can't believe that a baby that responds to my voice, looks in my eyes and connects with me, touches my face when I give him eskimo kisses is just not there inside. No way.
Anyways, I think the nurses had been preparing for the Doc to drop the bomb on me because they all told me it was ok to cry. Apparently (this happened in the ICU with Shell, too) everyone keeps expecting me to bust and just implode and turn into a puddle in the middle of the hospital. They can all keep waiting. I've had my moments, and they've all been in private and when I felt comfortable enough to let my emotions go. They told me that they knew I was a 'tough-guy' kind of Dad, but that I needed to let it out. Whatever. Like I need to show weakness and vulnerability DIRECTLY to those I already feel that way in front of. What a waste. The nurse hugged me and I really think she thought I would just tear a river loose right at my son's bedside on her (a complete stranger) shoulder. (Angel, the jackhole wacker also applies to medical degree folks, too.)
My response was that we needed a meeting with my wife and that it wasn't really right to have these discussions without her. If they want me to schedule meetings with them, the least they can do is have the same respect back. And I called our pediatrician for a second opinion to sit in.
So that brings us to yesterday.... My Mom and Dad joined us, along with our pediatrician, Dr. Vaughn. We all sat down around Mikey and started talking about the pro's and cons of doing the surgeries at the same time, versus different times, etc. My feeling was that if it was inevitable that he needs both and the risk of doing two at once wasn't big, then he should feel as little pain as he can. We might not be able to give him every little selfish thing we had planned on in his life, but I made a promise to myself that day that he'd feel as little pain as he had to, and when he has pain to endure that we'd be there with him for it all.
And, as folks who've read this blog may have guessed, I asked the docs the same question as always:
"If this was your son, what would you do?"
The attending gave the same gutless, no clear answer that the other residents did. Our pediatrician looked me straight in the eyes, took a deep breath and thoughtfully said, "I'd do exactly what we're proposing."
I realize now that it's not about residents or attendings, but quality of Doctor that gives them the ability to take a stand on something and give you their real feelings.It was kind of hard to swallow and when the docs left the room, Shell and I had one of those defining moments in a marriage. We both saw pain in each other's eyes and got stronger for the other one. We talked out all the steps and what we thought was best for Mikey. We both decided on the least painful and most reasonably expedient way to bring him home. Hospitals only get people sick and the longer he's there out of his tender first year the less chance he has at being a healthy child. We're not disillusioned to the fact that his current situation doesn't show lots of light at the end of any tunnel - just enough to want to make damn sure he give him everything we can get for him right now. All the way through this, deep down I've only wanted to be able to look myself in the mirror and be able to know in my heart that I've done everything for my family I could. That I would make the best decisions I could with the information I had, and to do it all with respect to the human being in my care, whether it was Shell or Mikey. I've realized fatherhood is different for different people, but I've chosen to stand and deliver and not back down and run away from the frightening situations that keep coming at us. I don't say this looking down at anyone else in these kind of horrible situations or that I'm doing everything right - not at all. I just want to make sure I've upheld my vow to Shell of "in sickness and in health" and stood by my son and given him the best shot possible at the best life he can have. It's funny how you don't have vows with your children. Maybe that's because a vow is a joint commitment - but I think perhaps it's not a bad idea to look your baby in the face, no matter what age they are, and make sure they know that when you make a promise you'll keep it. When they're hungry, you'll feed them with the best you've got.When you see them in danger, you'll break your neck to save them. Wouldn't this world be better if everyone did that? I can't imagine anyone teaching their son to blow people up if we did.
Sorry for the soap box.
Turns out the biggest obstacle to all of this is the post-surgical issues the trache causes. He can't be discharged to his parents care without at least 8 hours of in home nursing, which, surprise surprise is not covered under most insurance plans, including ours. So, get this, we actually have to be turned down by medicaid, to apply for a medicaid waiver to cover this. It will likely take 4-8 weeks to get the rejection, apply for the waiver and get it. Then we have to hope that the agency can find an LPN that will fit with our schedule...meanwhile, the surgery only take a week or two to heal from and be ready to come home. Yup, you got it, he's going to sit at Children's Hospital until PAPERWORK is filed! I asked if I had the money to hire someone directly until the paperwork was approved and they all looked at me if I was crazy. Crazy to want to bring this baby face home?
Today was better though. We met a couple that had a baby boy a little older than Mikey with both a Gtube and a Trache. They allowed us to come to his bedside and look at him and ask questions of the nurses and them, etc. It's like this family was in a parallel universe with us. This was their third child, and the only one with problems. Michelle and the baby's Dad even shared 'miraculous' recoveries in common! 9 months ago he had a major heart complication and was in the hospital for months with both a trache and a g-tube himself. Unreal! He told us that only 2% of people survive what he had - Michelle's odds weren't much better. Their baby didn't have a traumatic birth, just a minor development problem that he should likely get over later in his life.
But wow, it was nice to not feel to alone in this world. To know other Moms and Dads had to see the little white plastic tube on the collar around his neck and to put feedings into a tube rather than the sweet bonding practice of nursing or bottling your baby made it seem just a little bit easier. I know it's going to be tough, but man - to not be alone is worth a lot of bandaids on your heart.
