Soul Searching.....

Last Wednesday, we heard from Cathy, our PICU social worker. She called to tell us that the cancelled team meeting was rescheduled for Friday afternoon. I spent the time in between pushing fluids, popping antibiotics like they were Pez, and tokin' on two different inhalers in my best attempt to eradicate the bronchitis that was keeping me out of the PICU. Sick or not, I had to be there. But I held onto the hope that resembling slightly healthy might mean a quick peek at Little Bird, even if only thru the glass of her door.

When we got there, MFH buzzed in and spoke to a nurse who instructed us to hang out in the waiting area until we were summoned to the conference room down the hall. Seven different medical professionals, plus us. Little Bird's attending physician began by briefing everyone on her medical status. Concerning last week's emergency, she is stable and steady, and holding her own. They found no evidence of any neurological issues, meaning that what she had experienced in the midst of the evisceration wasn't a seizure, but rather pain. Very excruciating, very overwhelming, very raw pain. Her team spared no time in getting the situation under control. Her surgeon made certain that the wound will not reopen again by suturing and stapling a clamp in place around the site. It definitely isn't pretty, but it works.

Even though her pain meds are being weened down as I type this, she's still on some pretty powerful stuff. But it's keeping her from feeling the severity and the extent of the healing. We're not back to bottle feedings yet, but she is taking bolus feeds thru the G-tube. Though we still have a way to go in regards to getting back to the amounts and frequencies that she was at. Her vent settings are also being slowly bumped down to where they once were. It may not seem like much, but she's busting her Pamper's to get well, and all of this progress is pretty hard core.

Immediately after that update, our vent-to-home program coordinator began explaining the outline of what the next few months of our lives will now involve. Before we could be officially accepted into this eight week long boot camp, certain criteria must be met. And before that can even be evaluated, they needed to ensure that we were ready, willing, and able to continue forward. Because it isn't simply "Well, this is what she's going to need once she comes home", but more along the lines of "Are you a hundred and fifty percent sure that you can do this?". Parental duties and responsibilities are one thing. But being a caregiver, for however long that may take, is above and beyond.

I can tell you that this wasn't something we wantonly agreed to. Even though the emotional us had the immediate response of "Yes! Bring it on!", we spent a long time looking at the situation from every single possible perspective. Like, what happens once she's home, and Number Four has three friends in for a slumber party, and I'm sick? Or, what happens if MFH's back blow's out? Can I handle caring for her, him, and everyone else, without any help for several days at a time? And even the don't-want-to-go-there-but-we-need-to scenario of what about if she can never make the jump off of the vent? Should her prognosis ever change for the worse, are we capable of making this commitment to her? Are we completely aware of and prepared for what's in store? Long stretches of stressful days and nights with no sleep. Kissing any prospect of a social life beyond emails and Facebook goodbye. Our electric bill tripling. Weekly visits to several different specialists. Opening our lives up to strange medical personnel, as well as our home to physical and structural changes. If we had any reservations at all, this was the time to voice them. Our one opportunity to speak now or forever hold our peace.

I'd be a liar if I told you that I didn't have any doubts. The biggest being can I give Little Bird the kind of life she deserves and still maintain a balance with my other five children. Am I stretching myself too far? Am I taking away from the other kids? The good news is, I already had six months to contemplate all of the above. And the plus side is that tomorrow will always only be another twenty four hours. I won't suddenly wake up and have to take on a year's worth of everything all at once. When we do bring her home, she will only be one day older than the day before. One day at a time. Can I handle that? Yes. Are we ready? Absolutely.

We ended the meeting on that note, and expected to head home immediately afterward. However, the PICU charge nurse took pity on my boo-boo face, taught to me by none other than Little Bird herself, and cornered her doc on the way out. "C'mon, Doc, just five minutes!". Doc L caved, and they handed me a surgical mask. Bazinga! 

"Mom, you're embarrassing me!"

"What's going on 'round here?"

"Oh! I get it! Dress-up!"

"You're lucky I have a good sense of humor!"

We actually got quite a bit more than five minutes, thanks to Cathy popping in to *cough*remind us about umm....something*cough*. She bought us a bit over an hour total of snuggles and luvins and kisses. Little Bird was sitting upright in her seat, and smiled at us the second our eyes made contact. To my surprise, her nurse pulled up a rocking chair. I honestly didn't even expect to be permitted to hold her, but certainly wasn't about to object. She thought the mask, and my Go-Go Gadget glasses, were hysterical. This was also a tiny blessing, because I was worried that she'd surely see it and immediately freak out, thinking she was about to be cut open again. You wouldn't believe that a six month old infant is aware, but she very much is. MFH and I have witnessed her zone herself out and concentrate on the fish on her ceiling during suctioning or trach care. She does recognize when the boo-boo's are coming, and it is heart wrenching. But at the same time, she knows when they're not, and that's a both a blessing and a curse. Because no child should ever have to realize the difference. 






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