Nearly two weeks ago, we had a staff meeting with Little Bird's team to discuss the prospect of entering the hospital's vent-to-home program. Last Wednesday afternoon, Cathy (our inpatient social worker, because now we have two) called to notify us that we've been officially accepted. We'd been given the green light by the hospital's administration to be discharged, which was no easy feat itself. In order for them to even consider allowing a patient to take part in this, there are some seriously important and mandatory standards that must be met. Do we have a two hundred amp circuit breaker in the house? Can we run two separate, dedicated lines for the ventilator? Will there be at least two full-time care givers available at all times? What do our finances look like? Are the other kids prepared for this new lifestyle? The fate of our family laid in the hands of thirty seven strangers. Like you can't even imagine. They needed to know absolutely everything about our lives from the moments of our births, including if we had any unpaid parking tickets and what kind of font do I use to post to this blog. You name it, they asked it, and we answered it. And that was the easy part.
We celebrated the news by rushing to Little Bird's bedside within the hour, and telling her face-to face. We were sooo pumped. We walked into that hospital slingin' guns and ready to rumble. But our excitement was short lived. Since the evisceration, something inside of her has changed. In hindsight, I'm kind of surprised that it took as long for this inevitability to happen. Since the surgery to repair the fundo? She's become terrified of people. She startles very easily, and it takes at least twenty minutes of standing next to her bedside while talking to her and making eye contact with lots of genuine smiles from us before she becomes trusting enough to allow us to hold her. Us. Her own parents. When her nurses or respiratory technicians enter her room, if she sees them before she hears them, it takes just as long to calm her down. So many tears, and so much fear. And who could blame her? After a good while, she did allow for us to pick her up and hold her, although she was extremely cautious and guarding.
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| "Please don't hurt me!" |
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| "No boo-boo's....right?" |
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| "Those needles scare me." |
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| "They're always pinching me." |
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| "Don't Let Them Poke Me, Daddy!" |
If you have kids, or have ever had the displeasure of witnessing one receive routine vaccinations when they are already old enough to be aware of what's about to come, it's kind of like that. Only multiplied by twenty. But she is starting to come around. Especially after the last week. The vent program has a strict and very particular policy concerning the great amount of time that both parents need to be at the hospital, at the same time, throughout participation. For a minimum of eight hours a day, every single day, for approximately eight weeks. Two months for MFH and I to learn everything that every single medical professional on her team has had the privilege of years to acquire the knowledge of. Pulmonologists, ENT's, respiratory technicians, dieticians, speech, physical, and occupational therapsits. Gastroenterologists. Cardiologists. Nurses. We are essentially preparing to bring the PICU into our home, indefinitely.
Because we have five other kids here at home, this is an impossibility for our family. I would do anything for Little Bird. Anything, but completely abandon her siblings. Maybe that sounds harsh, but they did not ask for this. None of us did. And if it were any of them, I certainly wouldn't drop my responsibilities toward Little Bird, either. This has been our greatest guilt from the beginning. Though they may be older, they still need us just the same. Knowing this, we begged for mercy, and took a shot at asking the program coordinator to bend the rules for us. Just a tad. For our family and our given situation, the only way we can feasibly stay in the program (because to miss a day means getting kicked out, and getting kicked out means long term care), is for MFH and I to take turns. Shifts. He spends two to three days at the hospital, while I'm at home holding down the fort. And then we swap. Our team took pity on us, and granted us permission to accomplish everything this way. Such is life as we've known it for the past six days. It has also been a culture shock and wake up call beyond words.
This scheduled routine is like rooming in, on crack. Because the only times that the staff is allowed to
MFH opted to take the first round, bunking in with the baby from Friday until Sunday when we swapped. After he picked me up last night, we were on our way home (yes, both of us, and as directed by the staff. I'll get to that in a second) when he asked me if I was thinking what he was thinking. And I was. What. Did. We. Get. Ourselves. Into? Feeling it was just as bad as saying it out loud. Unless you have a child who's life is completely dependent upon a few hundred thousand dollars worth of technology, you can not even fathom what I'm talking about. But I will do my best to explain it.
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| Now That's What I Like To See! |
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| "Are You Taking My Picture?" |
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| Grabbing For The Camera |
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| Watching The Big Game With Dad |
It has only been a week, and we are already exhausted. Physically, mentally, and emotionally drained. We were sent home last night by direction of Little Bird's team who've witnessed our first crash and burn. First, vent babies are the cure for insomnia. Because there is no such things as sleep, for even five minutes, when you are constantly aware that an outage can end your daughter's life. The average adult can go approximately five minutes (I'm not quite certain, though), without breathing or oxygen before permanent or deadly damage sets in. In Little Bird's case? She's got about two minutes, tops. We know this to be a certainty after Monday evening's trach change. This is a procedure we do with her every week, and will continue to do so after she comes home. However, this was the first emergency change we've ever participated in. Before we could properly set up our supplies, her piece dislodged from her stoma. We were very, very lucky to have one of the smartest nurses we've ever met observing us. She very calmly walked us thru it all before we were even aware of the severity of the situation. Don't panic. A hundred percent o2 from the dial on your left. Crank it all the way up, don't be shy. Grab the ambu-bag, there's no time for the machine to calibrate. Compress. Count. Compress. She's back. Give her a minute to recoup. You've got it under control. We watched Little Bird go from wiggling to woozy in thirty seconds. We also saw that event, considered minor by most professionals, wipe her out for the next few hours. Immediately after the new trach was in place and her sats were normal, she curled up in a protective, fetal position and fell asleep.
All of this took it's toll on us, as well. By the time we reached the house last night, we were both in tears, wondering if we were making the wrong decision. But we were also smart enough to realize that we were incredibly tired, and you never make any decision about your child's medical needs when you are. So we alotted ourselves the night to rest and regain our composure before doing anything out of haste. After a solid twelve hours of sleep, we awoke this morning still afraid, but no longer driven to the brink.
This afternoon beheld another team meeting, which we'll continue having once a week until she's released. We weren't even about to lie to them. We told the staff exactly what we were thinking and feeling, and to our surprise, we discovered that this is completely normal. And after receiving commendable remarks concerning our progress (which shocked the shit out of me, personally, because I feel like I don't have a clue as to what I'm doing half the time), we were given doctor's orders to take today off for our own respite. They tell us that this is to be expected, and often. They tell us that there isn't a single vent parent in existence who hasn't thought twice about running for the hills. We wouldn't know. Because we don't personally know anyone else who's ever been exactly where we are right now. It is the scariest feeling in the world.
Believe me, I'm not whining. I'm not expecting any of this to be easy, ever. And I am no stranger to care giving. It's been almost nine years since I lost my mom to metastatic lung cancer. I know exactly what burning out does to a person. Quite honestly, this is the most difficult situation I have ever lived thru. Period. But, how can I look this little girl in the eye and tell her that I am not strong enough to be her mother? I would rather cut my own heart out with a spoon. We may end up in the funny farm by the time this is all said and done. But we will die trying. MFH and I refuse to quit on her.
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| "Can I Has My Puppy Now?" |
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| The Award For Best Hair-Do Goes To.... |
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| Tiny Hands, Giant Heart |
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| Guarding |
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| Stinky Winker |
That being said, we are officially calling all cars. A big part of the program involves resourcing. Learning how and where to find a back up for our back up. Having a Plan C, D, and E before we can anticipate needing them. So many people have offered us help for months now. And now is the time when we need it the most. So, if you happen to owe me one, I'm cashing in. As of three o'clock this afternoon, we now have a tentative date of discharge. Tentative, as in any little hiccup can set us back for several more months. If we miss a day, or Little Bird has any further medical issues, we will be kicked out of the program, and getting back in takes an act of God. Tentative, as in because of the situation we've experienced back in November, we are both far too superstitious to publicly announce it, yet. But it is upon us. All I am willing to say is that it is sooner than you may think, and certainly a lot sooner than we expected. Keep your eyes on the blog for further updates. Believe me, when it happens, the world will hear me singing from the rooftop.
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| Her Reaction To The News |
During my first over-nighter with Little Bird, she and I concentrated on rebuilding the trust so many surgeries stole from her. We spent, literally, two entire days in a rocking chair, cuddling and catching up. Trying to get her better than good. It's not something that can be magically cured in a few days, but we're getting there. She still cringes when caught off guard, but she no longer feels like we're going to hurt her. In fact, this afternoon? As we were in the meeting, her respiratory team was in the midst of transferring her onto the vent she will be released to come home on. When we entered her room, she was guarding again, and outwardly expressing physical signals of fear toward the four strangers in her room. We approached her bed and held her hands to let her know she wasn't alone. She squeezed our fingers and smiled, and calmed down enough for them to successfully bump her down to room air on the machine. Her feedings are also almost back to where they previously were, and she's begun to take the bottle once again. Not a lot, just a half ounce per attempt. But it is better than nothing. Her wound is also healing, even though the clamp and sutures will remain in place for several more days. It started to look suspect to us over the weekend, and her surgeon irrigated it this morning. However, they're being overly cautious and have already started her on another course of antibiotics to prevent the slightest possibility of infection.
I never knew it was possible to want something so badly, yet not at all, at the same time. To have fear and anticipation all at once. In a million years, I never imagined I'd be in this position. To be so incredibly blessed with the most amazing presence I've ever known. I think back as recently as Number Five's arrival. Those first, precious months with her. When she was this age. How lucky we were. How lucky we are. Life is so amazingly fleeting and fragile. Every minute is a gift. No matter where you stand, in this very moment, take a minute. Consider your position. If you're broke. If you're lonely. If you're worn out. If you're hurting in any way, or want for anything. Take a look around you, and think of all you have. When you take your next breath, inhale as deeply as you can, and hold it for a second. Go ahead. Do it right now. See that? See how incredible that ability is? Feels pretty good, doesn't it? Cherish every single chance you get to do that. You never know how easily something we all take for granted can be taken away from you, just like that. So appreciate it all. The worst of the bad, and the very best of the good.
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