First, Do No Harm.....

When we started the vent program, MFH and I made a promise. To each other. To Little Bird. To our medical team. If at any time, or any reason, we didn't feel absolutely comfortable in our ability to give Little Bird the standard of care that she deserves, we would be the first to admit it. From that day forth, whenever we accomplished any aspect of medical training or instruction, we were always asked. How confident do you feel? In the early days, we hovered somewhere around twenty percent. Then, slowly but steadily, our self-assurance began to grow. Fifty percent. Seventy five percent. Ninety percent. It wasn't until the day we completed the car trial were we able to say, beyond the shadow of any doubt, that we were both ninety nine percent certain that we could bring our daughter home, able to completely handle her posse of mechanical interventions and devices. We will never say a hundred, because we will never be that sure. We know Little Bird well enough than to ever let ourselves be so cocky.

The aftermath of March 11th took away so much from this family. We've been reeling ever since. Spinning uncontrollably, and desperately trying to regain our equilibrium. Frustration, confusion, and devastation deduced eight months of progress into nothing more than a measure of days on a calendar. We weren't pushed back to day one. We were so far beyond even that, to the point where Little Bird's first few hours on this Earth would have been a stronger foothold on the situation. Every single aspect of the eight of our lives had been affected, and in ways we never imagined were possible. Little Bird lost her intestinal tract, and we lost our minds. By the time reality set it, we became so crippled with fear that we didn't even trust ourselves. She needs her diaper changed, let's buzz for a nurse. She needs to be suctioned, where's the call bell? She's due for a trach change tomorrow. Do we have to do this ourselves? 

I don't expect very many people to understand all of this. Not very many at all. And if you don't, you are very, very fortunate. Because it means you've never had to witness human suffering on a level so profound that there aren't even adjectives to properly describe it. You've never had to stand back and watch a team of people conduct chest compressions on your baby. You've never had to feel your daughter squeeze your finger with such ferocity as a nurse was packing her belongings into clear, plastic bags. You've never witnessed that look on her surgeon's face. That apologetic look of defeat. Be grateful for that. Count your blessings. And read the rest of this post with an open mind. But remember. We aren't putting this out there because we want opinions. Frankly, only one person's matters to us anyway.

Little Bird is pretty amazing. This, we've known. Even at her very weakest, she is the strongest person I will ever know. She's got a wicked sense of humor. She is fearless. And she is also incredibly determined. She's spent the last several weeks proving western medicine wrong, once again. The little girl who, for all intents and purposes, isn't supposed to even be here right now but gave the specialists in Pittsburgh the big eff you, and has made her stance concerning a once-upcoming Bianchi procedure crystal clear. No more boo-boos. In what can only be described as quite possibly the most remarkable recovery known to mankind, as it turns out, she does not need any foreseeable lengthening. This is something that MFH and I are still dumbfounded by, as is her surgical team and gastroenterologist. She's managed to somehow pull another rabbit out of her diaper, and already accomplish healing to such an extent that all predicted surgical interventions have been hereby postponed indefinitely.

Of course, she's also only human, therefore still requiring total parenteral nutrition for the time being. However, she is now half way to her goal amount in which we can begin to hopefully ween her down and completely off of the pump. Quite an incredible feat in such a short amount of time. Truly amazing when you consider how heavy the odds were stacked against her. Imagine, if you will, how speechless we were to find out a few days ago that she can be released to come home within the next three weeks.

Sounds pretty spectacular, doesn't it? It should. Maybe it would, if it weren't for the fact that MFH and I are idling at roughly nineteen percent confidence in caring for her ourselves. And so, when Cathy (our social worker) asked us how prepared we felt, we kept our promise. We told her the truth. That we are scared shitless. That we are no longer comfortable with so much as picking Little Bird up without the assistance of our nurses. That we love her too much to ever dare compromise her life.

I've repeated this ad nauseum on this blog. But, one more time for the cheap seats. As long as she is ventilator dependent, it doesn't matter where she is, Little Bird will remain classified as a critical patient. And that is just the vent. Add to it the trach, and the G-tube. And now? A PICC line and a TPN pump. I am not Super Mom. Not even close. Having six children to raise is difficult. Knowing that the only thing that stands between my youngest and the hereafter is a few well-placed tubes, a bit of education, and someone inadvertently forgetting to wash their hands? Makes for one, big, unexpected, grown-up moment.

Theoretically, MFH and I can get in the car right now, drive to the hospital, and bring Little Bird home. Today. In this very moment. But, we can also walk out of those doors with her, and directly into a disaster. We can bring her home tonight, only to be readmitted by morning because of something lost to haste. To be brutally honest, we didn't make it this far to lose everything. We are not ready. We are not where we were on March 10th. Not even close.

Because more is lost to indecision than to wrong decision, we had a choice to make. A few days ago, and after a very long, very personal conversation with Cathy. Suddenly, we weren't just a couple who had spent the last eleven months in a hospital with our kid. We were Little Bird's parents. Two adults, who needed to opt for not our own personal wants or needs, but for what is best for our child. With every ounce of reluctance in this world, we did.

As I write this, the ball is in motion. We've decided to make a bit of a pit-stop in our journey. A brief respite, if you will. The opportunity to re- familiarize ourselves with what we learned. The chance to get our groove back, and to do what is absolutely essential for Little Bird's well being. A rehabilitation facility (oh, yes), until we can once again declare ninety nine percent certainty. For however long we may need. Could be a couple of weeks. Could be months. It all depends on our ability to learn how to trust ourselves again. To no longer feel the fear that we've been trying to overcome. To bring Little Bird home to anything less than a family that is not fully prepared would be the biggest mistake of our lives. She deserves the best that we could give her, and we will be not only on top of our game. We will make damn certain that we are ahead of it.

And so medically, the game plan is to begin weening Little Bird off of the TPN pump while she's there, as well as to re-acclimate her to the bottle feedings she's already begun. It also gives her a running start against some neurological and physical issues. An environment that mimics home. No restrictions on visitations for her siblings. And there's also that gigantic decrease of risk of infection as compared to the PICU. Little Bird's immune system is still healing. It will be several more months before she is capable of fighting off everyday germs that we are all commonly exposed to. These aren't required goals. In fact, there is no requirements. As soon as we say the word "go", she will be discharged from this facility. So, in the meantime? We're going to continue to work on getting back to where we were. Back to where Little Bird needs us to be. Back to good.

This is it. The final leg of our voyage to hell and back. Her transfer hasn't yet happened, and likely won't for at least another two weeks. Until it does, we'll use this time to say farewell to the world's best pediatric intensive care team. Personally, the hardest part about this is having to leave behind such an outstanding group of medical professionals. But I know we will meet again on, at the very least, an outpatient basis. They've held us up thru some of our darkest days. This family would not exist today without them.

Thank You...

share on: facebook