Today has been intense, in a nothing-happening kind of way.
We are waiting for her to wake up.
She is not waking up.
She is not breathing on her own.
Her brain looks good, though, and sometimes her eyes flutter when she hears my voice.
Working as a chaplain, though, I know that is sometimes involuntary.
I tried to stay calm and pace myself today, being grateful for rest and quiet time that helped me get caught up on some home-type things.
I mailed some letters:
I stepped outside and went for a walk for the first time in a week, to smell the air and let rain fall on my skin:
And we gave that baby a bath, which made her distractors look way less scary:
Sometimes I sat with her, and talked to her, and prayed with her, and sang to her.
Mostly I waited.
There was a lot of waiting.
It’s hard to even leave her room, because what if that’s when she wakes up?
I got more training on how to turn her distractors:
And I stepped out to work on Hebrew while she was getting a PICC line, just in case she needs resuscitation, they said, and to get some IV’s out of her foot. They can’t loose her airway and her IV’s, they said. It will make things safer and easier and faster, they said.
In the meantime, I took care of some business. I got some homework done, I finished all the notes I had to do, and wrote a few essays. Mostly, though, I can’t focus very well, though it is better since I have slept.
We are still waiting on her to wake up, but we have some plans settling into place just in case:
If she doesn’t get better, we will be here for the whole distraction – all six weeks of it.
If she does get better, and better enough to go outpatient, we have two options:
If we can get Medicaid to pay for even one or all of the flights, we could go home for four or five weeks, have weekly xrays sent up, and then fly back to have the distractors removed.
But that’s three flights: home, back here, and back home again, to come up with, not to mention other variables like feeding tubes and oxygen and whether or not home health in our county can get it together. Right now Cincinnati isn’t comfortable with home health’s response before we got here (that’s why we were life-flighted), and so I’m not sure they will go for it because her airway is so high risk. If Medicaid will pay even for two of them, we have the funds we could use for one flight if that’s what it was best used for in her care.
If Medicaid won’t pay for it, or if she is cleared for outpatient but not to travel, we will go to the Ronald McDonald house and she will come here for feeding follow-up and x-rays each week. There is a 21 day waiting list right now, and we are on it just in case, but now have enough funds in the fundraising account that we could use that if we really had to until it was our turn to move in there.
In the meantime, I am not working and have zero PTO. Why, you ask? Because I went to France for 10 days six years ago, and then to Israel for 10 days after my father died, and then back to Israel for 10 days after my mother died. Oh, yeah, and both my parents died. Oh, yeah, and surgery after surgery after surgery. And cochlear implants. Both of them. And cancer. And court for the kids and their adoptions. And and and. So I have never caught up to build up my PTO because things kept happening. So I don’t know how that will unfold, or when my paycheck is finished and the last one comes until I go back to work (plus being docked to pay for my health insurance, which I won’t lose but have to pay for). That said, one of the best things about my job is the benefits they provide for us, and that is what has been such a huge help in the past. I do have AFLAC, which will help cover some if I have to be gone too long, and did follow promptings to sign up the kids also when that was offered. I don’t know yet what that covers, if anything, but I sent an email two days ago to ask, so we will see. It’s at least something.
Caseworkers are also fighting for us and advocating for us. They got the baby bumped up to Level IV care, which is the highest, which gives her more provision to work with and pay for some of the things Medicaid won’t cover. They are fighting with Medicaid to at least pay for a flight home. They did work out the payment issue so the life flight and hospital stay has already been paid and is covered. They are working with the pediatrician to get the home health drama figured out. They are being very good and very kind and very helpful to me, and I am grateful that in these crises we have had really good caseworkers.
Also, we sent Two back. Did I tell you that yet? Two was ready to go back with mom, and it was almost time anyway. So when the baby and I flew up here, we sent Two to a different home for respite (a family she knows), and then they sent her on to rehab with her mom. That leaves Nathan at home with just “our” kids – which is fun to say, finally. Alex and Anber, who are already adopted, the boys (Kirk and Barrett) who were supposed to be switched from foster to adoptive placement this week but the adoption worker can’t do it until we get home because all four of us have to be there, and Six, who turns SEVEN today, and who allegedly is getting terminated this month and then will be an adoptive placement. That’s our crew, and just like that we graduate from being foster parents.
It’s like being released from a mission after two yeas: we are both sad and relieved.
And what I mean by that is that I am sad and Nathan is relieved!
I am kidding (or not), but Nathan is doing an amazing job with the kids while I am away. I am so grateful for his hard work and service to our family. I talk to the kids on FaceTime several times a day, and we are all staying connected best we can. They are amazing and enjoy summer, so sometimes aren’t bothered so much that I am not around. It will be an adjustment when I come home again, for our family to re-balance and re-settle one last time.
For now, we just need this baby to wake up.
Any minute now, right?
She is starting to swell, and the nurses are getting nervous, and the RT lady pretty much just stays in the room now.
I know about life support, and from being a chaplain I also know about delaying death with machines.
But this is not that, I know, because there is life we are supporting.
I focus on that: her color is good, her heart is doing better (though still with frequent episodes of v-tach), her brain looks good, and oxygen is finally in her body – even if it is coming from machines – and carbon monoxide is getting out of her body.
That’s something, right?
Even if we need her to start breathing on her own, and need her desperately to wake up?
I also obsess about watching her face move as we do the turning of the distractions.
Can you tell a difference yet?
Here is before the first distractor turns:
And here is after the third one, which makes a total of 6, which means six mm moved already, just today!
Can you tell? She has a tiny bump of a chin! Can you see it?!
Breathe, baby, breathe! And wake up!