Traveling home: Part Two

[Please read HERE for Part One.]

The flight was going well. There was plenty of back and forth across the aisle with the iPad as I tried to connect with Bogomila. She spent much of the beginning of the flight with it sitting on her lap, set to the world clock app with Sofia staring up at her. Oh boy. She's homesick already, and I'm limited in what I can do to help her. Thankfully the regular routine of hot towel, snack, juice, lunch, etc keeps everyone from going stir-crazy, and eventually she and Leah find a good variety of cartoons (funny in any language if you get the right ones), and games on their seat back screens.

Mira is laying peacefully in Adam's lap, and is having such a great time awake that we decide I should take one quick trip to the bathroom and then we'd resettle her with her head on my lap so I can capitalize on her alertness to continue building our bond.

I think the photo Adam's taking is a better shot - it looks like he's got a better angle at Mira's face  - I'll have to see if he'll email me a copy! But this photo of a photo being taken is kind of humorous.

Here's Adam's shot. ;)

 After moving her, Mira is not very settled, she's moaning slightly, and just doesn't seem comfortable. We try moving cushions under her, and rotating her slightly, but it's just not doing it. We notice that her left hand looks swollen, so we try rolling her onto her other side, so she's facing away from me. Sweet baby thinks that's much more comfortable, closes her eyes, and sleeps peacefully. The flight moves slowly, yet steadily, and I am thinking over the various options ahead of us once we land.

As Adam, Dad and I, and Matt, have talked over the course of the week, there are three versions of the end of the story in our minds. One involves landing and everybody going home. Our contact person at Gillette has moved up our first out-patient appointment from two weeks after we get home to three days after we get home by overbooking with a different doctor. If we can make it at home until Tuesday with Mira, we could then take her to a normal appointment, and he could admit her as an inpatient at that time if he felt it was necessary.

None of us really thought that was going to be a good option. For starters, I was concerned that if I brought her home it would be easier for them to say I could just keep doing what I was doing at home for a while. Knowing how much more relaxed Dad and I were about caring for her after Adam arrived in Sofia I was definitely not looking forward to doing it alone for a few days, much less a few weeks before hitting a crisis to allow her to access the help she really needs.

A second option was to be prepared to have an ambulance waiting for us upon landing and take us directly to the ER at the hospital that's connected to Gillette. (Gillette does not have an ER of its own, but they are physically connected to the hospital that does.) Longing to be able to at least see my other little ones, and to be with Bogomila when she was carried through the doors of her first real home made this option palatable only if it was critical.

The third option, which we all agreed made the most sense from all perspectives, was to all go together to our house (after Adam checked his bag through to Philly), spend twenty minutes or so there (enough time to nurse Gloria!!) and then have Dad take me, Adam, and Mira to the ER. Dad could then return home, pick up Mom, and go back to Wisconsin. Adam would find his own way back to the airport once Mira and I were settled.

What a smart girl, I think. There's no better way to pass a long flight than by sleeping!

And then a little over an hour away from landing at home she wakes up.


But, no, she's not really awake, is she? No. She's seizing.

We'd spent the days since her Monday pick up watching her carefully trying to figure out her patterns - what are seizures, and what are abnormal neurological movements, but not really seizures? What are simply reflexes, or natural responses at an immature neurological level to some stimuli? Over the course of the week we came to the conclusion that most of her odd movements with her mouth and eyes were likely NOT full blown seizures, but something else, but twice, once on Tuesday (with me and my Dad) and once on Thursday (with me and Adam), she had what appeared to be twenty minute long clusters of focal seizures that eventually resolved on their own.

What we were seeing now on the plane was definitely seizures. However, this time around they were different in intensity, and even in quality. Her limbs were involved, and the grip the seizure had in her face (which is where the focal ones earlier in the week had been centered) was much stronger. Suddenly, we were glad Adam was along. We were NOT in the bulkhead row we had been hoping we would be given, which would have given us much better access and ability to move around. As it was, Adam kind of turned sideways in his seat, I think up on his knees, almost, with all of his tools ready at his fingers - we were monitoring her pulse, oxygen levels, timing the cluster itself...and prepping the Diastat. (Anyone who's read this blog longer than this story knows Diastat - it's the rescue med we have for Reuben that basically knocks him out when his seizures do not stop on their own. As he's grown bigger, we had two doses that were pre-set for a dose too low to be useful for him anymore; Adam had suggested that I bring them along for Mira in case there was any occasion to want them.)

As we were suddenly on full alert, all of our senses engaged in the task at hand, I looked up at Adam at one point and told him we no longer thought there was no reason to have him along on the flight, but that he was worth his weight in gold. On second thought, though, I think that undersells him. As a man with a tall, skinny build like Matt's - we'd better go with double his weight. I didn't tell him that at the moment, though.

As I watched my peacefully sleeping daughter suddenly begin to seize and the cluster of intense focal seizures begin to take over her tiny, fragile body, my heart broke, and I wanted to lift her in my arms, stand up in that airplane, and say, "Look everybody - this tiny person is now my eleven year old daughter - this kind of thing is happening today in our world. Right here in front of you is a living, breathing (at the moment, and we hope it stays that way) example of the suffering that is happening RIGHT NOW in our world, but in so many many cases it is hidden away, out of our sight, our of our minds, out of our hearts.

"Look at her! This is real. This kind of stuff isn't the stuff of movies, or of a long past history - there are real live children just like her living their lives alone in horrific conditions right now. When they suffer, they suffer alone and that's not okay, and there's got to be at least one of you on this plane that has got to go DO something about it!"

I didn't actually stand up and say that, but every fiber of my being was screaming it on the inside. Look at her! She's not the only one. Someone has to go do something about this!

There are enough people watching this blog this week that I can stop to repeat that here.

There's got to be at least one of you reading this right now who has got to go DO something about this.

I do not want to plead with you generically, but if any one of you knows that God is directing you down this road, you need to be obedient! Trust him! If he is calling you this way, you can know that he will do everything necessary for you to complete the work he sets before you! Take an honest look at the excuses you may be tempted to make - where are they coming from? The further on I go the more I realize my decisions are either made based on trusting my God, or from fear. There is no other option. Is it hard? Yes. Does our decision to adopt put stress on our children at home? Yes. On our marriage? Yes. On our finances? Yes. On our own physical health? Yes.

But what about the alternative? What kind of impact does it have on our children, our marriage, our own physical well-being when we decide that the preservation of any of these things takes precedence over obedience to our King??

Whoever loves father or mother more than me is not worthy of me, and whoever loves son or daughter more than me is not worthy of me. And whoever does not take his cross and follow me is not worthy of me. Whoever finds his life will lose it, and whoever loses his life for my sake will find it. - Matthew 10:27-29 

I need to repeat that last part. Whoever finds his life will lose it, and whoever loses his life for my sake will find it. Far from needing to protect ourselves, the only real way to preserve ourselves is to lose ourselves for him. Over and over he drives that home to us in his Word. It can be so tempting to believe the lie that we need to look out for ourselves, when in reality, the only way to really do that is to recklessly throw ourselves on him. The challenges and fears associated with what God calls us to are only barriers to obedience when we take our eyes off him.

...let us run with perseverance the race that is set before us, fixing our eyes on Jesus, the founder and perfecter of our faith, who for the joy set before him endured the cross... - Hebrews 12:2b-3a

 

The life of obedience is not an easy, comfortable life, but over and over I see that it's not just a call to come and die, but a call to come and die so that you might really live! There is JOY up ahead! And the way to that is not through fear and self-preservation, but through faith and obedience.

And without faith it is impossible to please him, for whoever would draw near to God must believe that he exists [as in, he's really able to do what he says he does, really is bigger and stronger than anything we might be afraid of] and that he rewards those who seek him [there it is again - he promises this is for our good, this is how we find real life, there is joy ahead, he rewards those who seek him!] - Hebrews 11:6, [with my own comments in the brackets]

So, if you are the one reading this who needs to go. Go.

There. Now back to Mira.

We hit nineteen minutes of the seizure cluster, with poor Mira alternating between seizing and moaning or crying. We were in our own little world. I was vaguely aware of my Dad helping us with timing, and just general readiness, but otherwise it was just me, Adam, and Mira alone in this little bubble of space and time. We did one more verification of our best guess at the correct dosage for Mira and went for it. The medication is meant to be pre-set by the pharmacist and administered all at once; we did not have that luxury, so had to both guess the correct dose ourselves and make sure we only gave the amount we wanted to give. (Once again in hindsight, we did well; the neurologist here at Gillette wants her to be on a 2.5mg dose, and we estimate we administered about 3mg.)

When Reuben was originally prescribed this medication as a rescue measure, we were told to call 911 the first time we administered it because there is a risk of everything slowing down so much that even breathing is impaired. Adam watched her carefully, and she handled the dose beautifully, with the seizures calming after about 2.5 minutes, and by four minutes she was asleep - just what we expect out of Reuben. All of her vital signs remained steady, and she slept peacefully for about 20 minutes, and then was awake on and off for the rest of the flight.

Looking over, I notice that Bogomila has the world clock app set to Minneapolis. 

I got up at one point to use the bathroom - just to move! - and realized I was trembling almost incontrollably by the time I returned to my seat. As all of the adrenaline, not just from the very intense last half hour, but also low grade levels from the entire week prior, dumped from my system all at once, I was beginning to wonder if the Nurse of the Twenty-Seven Pockets might have another patient on his hands! Thankfully, this one was easily calmed with a few drinks of water.

The rest of the flight was uneventful, and passed in a sort of haze. We now knew without a doubt that "wait for outpatient on Tuesday" was no longer an option, but were also thinking that "ambulance at the gate" was not going to be necessary.

[You can will soon be able to read Part Three HERE.]