Thursday, August 27, 2009

9 Days and 9 Nights

My sincerest apologies to those of you pining for the next episode of Meg's Anatomy. Believe me when I invoke the adage, "No news is good news." Since last Tuesday, Meg has cooperated in allowing me to focus on my return to school. Meanwhile, Jen has begun her new occupation as childcare professional, a career that is no less emotionally challenging than her previous position.

Reader's Digest Anecdotes.
In 1940s Europe, civilians became all too familiar with the chilling alarms of air-raid sirens, sounds that sent ordinary people fleeing in terror. I will personally attest that the modern day version of such an experience is the apnea monitor in our bedroom, our living room, our dining room, Babies R Us, Walmart, or wherever we can be found. In my line of work, I have learned to make rage one of the last responses ever to overcome me. Discipline of mind gave way to humanness the third night we spent at home. As designated bather of babies (my contribution since I haven't the skills to breastfeed), I had given Meg a bath on Thursday afternoon... and rubbed her down with baby oil, a substance that makes monitor patches refuse to stick. The loose connections led to my threatening to launch the machine from our second story window when it roused us at five minute intervals with its piercing. Chemistry lesson for the day: oil and sleep apnea monitor do not mix.

Meg was introduced at church Sunday morning. Despite our attempts to spare Jen from bawling (sneaking in late, sitting in the rear, making little eye contact), Pastor John's moles in the sound booth did not let us escape his attention. Fortunately, Meg is already understanding enough not to embarrassed by her mother's tears and her father's clumsy attempts at jokes to mask his nervousness.

Actual Updates (for those bored to tears with the "anecdotes" segment of the episode, myself included)
The little patient has been seizure free for 14 full days... we think. I add the addendum because sub-clinical seizures are possible, and we would not know that these had occurred without the use of an EEG. She continues to eat very well, and her periods of waking have become more frequent and more convincing. Meg gains better control of her eyes each day, and her physical strength is surprising for a three-week-old.

Wednesday afternoon, Meg was reintroduced to the first man she ever truly loved in her life, our family doctor. She looked a little different this time, and so did he quite frankly. For one thing, he wasn't trying to regain his breath as he was the night he bolted up to the 3rd floor delivery room just in time to keep her from hitting the floor. His physical exam of her found no abnormalities, and she managed to stay awake for the lengthy wait in the hall and the examination, which is more than I can say for myself.

Wednesday night, Meg met a new man, a tall, dark, and handsome chiropractor for whom I will not make up a name because he happens to be my best friend's father-in-law. After every test run by the medical experts at St. V's turned up few to no possible causes for Meg's seizures, we have elected to see what chiropractic medicine may have to offer in the way of answers. As my great uncle, the chiropractor, once said, "If doctors and chiropractors could find a way to get along, they could fix anything." Perhaps Meg has found a new mission field in reconciling these two long-estranged sister sciences. We will see. Anyway, the chiropractor probed around in the back of her skull and found the first piece of evidence in nearly three weeks that is abnormal. Meg's neck felt different on each side of her spine directly below the base of her skull. He explained that a fast labor (less than 2 hours is pretty fast) can exert greater pressure on a baby's neck than a longer labor and may lead to alignment problems. And potentially, seizures. As I held her peaceful, sleeping body in my lap, he cracked her tiny neck one way, then the other way, and back again. It gives me the willies just picturing it. But Meg did not stir a muscle until he was finished. She stretched a bit, made a few squeaky sounds, and continued her slumber. We will return for another adjustment on Saturday.

Today, Meg completed her trifecta of doctors in twenty four hours with her visit to the neurologist in St. V's. We went with the expectation of an exam, lab work, and an EEG. Dr. Ageless very apologetically broke the news to us that the EEG technician in his building only performed the procedure on Mondays, Tuesdays, and Fridays, news that he first learned today. His examine revealed nothing more or less than the examine she received the previous day, and the lab work could more easily have been completed at a nearby facility. While we enjoyed some laughs with our neurologist buddy, we were keenly aware that the trip had revealed little. Furthermore, the lab tech's attempts to collect urine were predictably fruitless, as Meg had already emptied herself into her diaper, soaking her onesie during our trip to the office. One small piece to the puzzle that we gained from today: typically a seizure patient will be on meds for four to six weeks before dosages are reevaluated. What does this mean? In another three weeks, Meg will have had several more adjustments to her spine, adjustments that may make the medications unnecessary. We will have to wait and see. And pray.

With all that said, our baby is home, we have an immediate family of four, extended family, church family, terrific caregivers, each with various special necessary skills. We have a Father who quietly, ever so subtly reminds us that He has got it all under control. My devotional Bible has brought me to the Joseph story of Genesis. In fact, I read the end just this morning. For years Joseph was not privy to the broad scope of his life. But now that we know the end, we say, "Oh silly Joseph, can't you see? God knew all the time! Why did you ever worry?" Sure, that's easy to say when you know the end. Do we know how this ends? Well, we know who wins in the end, and that we are in His care is sufficient. We can sleep. Unless of course Meg's patches don't stick.

Tuesday, August 18, 2009

It might be... it could be...

It is! Meg is home! She is wired for apnea and drugged up, but the babe has returned, healthy and kicking.

We had a terrific day. At 1100 hours when we arrived at floor 6, the EEG had been removed. The nurse said the report looked clear, but we reserved our joy until we saw the neurologist. The pediatric physician stopped to talk to us about checking out, but still, we reserved our joy. Finally, the distinguished young neurologist entered to tell us that she had not had any seizures during the 21 hours that the EEG had been running. He mentioned that she still had some small "sparks" occurring, but the medicine was doing its job to keep the sparks from becoming blazing seizures. With all serious metabolic tests returned normal, his hope is that the meds can control the seizures and that the sparks will fade out as Meg grows. Please pray that this is the Master plan.

One would think that the story ends there. God was not done with Apostle Meg, however. Yesterday, when we were told we would need to wait another 24 hours for another EEG, admittedly our expressions dropped. We went to Toledo hoping for a Monday release, but for some reason, we had to make still one more trip home with an empty backseat. My question: Why didn't the doctors order a 24-hour observation beginning on Sunday so we could be cleared by Monday afternoon?

The answer: In the early morning hours of Tuesday, an ambulance transported a three-day-old infant, Braden, to the St. V's pediatric ICU, three rooms down from Meg. He was unwell from low blood sugar, and nurses witnessed some seizures. His parents, Ben and Carrie, found themselves right where we were eleven days prior. Our primary physician, having developed a good rapport with us over the past week, requested that we speak with them and lend them some comfort. We had the chance to hear their concerns, give them some ideas of what to expect, share our faith story, and finally pray with them for the wellness of their baby.

Again, many mature Christ-followers are thinking, "Of course that happened. That's how God works, Throne." You'll have to excuse me; I'm a little slow. But again, we pray for what we hope God will do, and we trust that He will do what He needs to for the glory of his kingdom. Our little missionary was again a conduit for her Father to reach people who desperately needed His comfort. We get the sense that this meeting was ordained, so please help us pray for Braden and his mommy and daddy.

Meg is home. We have waited to say those words. We have waited see her sleeping in her cradle. We have waited to hear her hungry cry from the living room, to have her with us as we sit down to eat supper, to watch her squirming on her blanket next to us while her proud sister tries to lovingly, but awkwardly, pick her up again and again. And many have waited with us. Those people have been Christ, Emanuel. "Thank you" seems ridiculous, but it is all we have to offer right now. That, and our sincere pledge to do the same for all whom we also find in need. May God always find us willing to serve as you all have served through prayer, resources, and abundant love.

Today is another fragment. (If you still haven't read the Woodcutter, why haven't you?) Meg still has a long process ahead, but we are hoping that the worst is far behind. Please ask God to allow the medicines to continue protecting Meg from seizures. Please, please continue to pray for her improvement for the next couple of weeks. The next part of her life is tense, and equally very critical. But Meg is home.

Monday, August 17, 2009

Finally some news.

No, still no definitive answers as to causes for Meg's maladies. We do have some news about her release from the hospital. Tomorrow, if her 23-hour video observation is clear, Meg Avery will finally get to come home. We talked to our original neurologist (the grey one was his temporary replacement) and he explained that a 23-hour video would give him better peace of mind. We agreed, although we came this morning with some hopes that she could go home today. So tomorrow around 2:30 p.m., we will meet with this doctor again and find out if we can stay home for awhile. It goes without saying that this thought excites us, primarily because it gives us a timeframe and a possible end to Meg's stay.

2 weeks with us.

Today marks two weeks that Meg has been in our lives. What an extraordinary time we have had. As a good friend said in an email earlier in the week, "Already in her young life, Meg has brought hundreds of people to their knees." Perhaps we have a little apostle swaddled before us.

Doctors are doing bloodwork today, and when we arrived at St. V's at 8:30, an EEG had already been performed. No reports of seizures for about 90 hours. We have a lot of tense waiting today.

This blog has not ever been about Jen and me; it is primarily about keeping interested readers informed about Meg's status and about our observations of her improvements and setbacks. She is the lead character; we are simply supporting cast. This comes as no big surprise to other parents. As associate ministers to pastor Meg, we try to pass on some of the limited insights that fall to us on occasion. That said, Jen and I are inevitably growing in our knowledge of Christ and our Father, and certainly in our reliance on the Spirit. Our minds are continually being renewed. A mind renewal that takes place in 10 quick days is much like a three-inch adolescent growth spurt that happens over summer break: It aches a little. Last night, I prayed a prayer that I have never known to pray, so I am convinced that at least some of the words that I blubbered must have been given by the Holy Spirit. Please believe me when I say that this was far from contrived. I thanked God numerous times for the gift of this child, thanked him for his use of her already in his kingdom. I thanked him for entrusting us with a child that has Meg's issues, whatever those may be. I asked that the knower of all answers lend answers to Meg's physicians. But here is where I was no longer the orchestrator of words. I pledged that Jen and I will submit to the divine plan that God has for Meg's life, no matter what that might be. See, I am not strong to pray for miracles. I am grateful that there are members of Christ's family who have that strength and gift, but I am not one. Huck Finn once prayed for fishhooks and didn't get none, and that hurt his faith. I have never wanted that to happen to me. As a result of this weakness, I often do not know how to pray in a circumstance like Meg's. But last night, in the midst of our pleadings for Meg's health, "the dove" descended, perched, and prompted, "Pray for answers to your baby's miraculous healing, and submit to your Father's plan, no matter what that plan may be." Uh, don't you mean but submit? Nope. For the first time, I clearly understood that asking God for something does not automatically set me up for disappointment if he does not grant my petition... if I sincerely acknowledge my limited understanding and submit to his ultimate plan. I can ask, and then defer to God's authority, just as I expect my children to ask me for something and trustingly await my judgment. More advanced (translation: older) readers are thinking, "You just figured that out, Throne?" I'm a little slow. I have heard scripture my whole life, but some truths only lay on the topsoil and do not actually take root until we are placed in circumstances to put those truths to practice. Last night, the weather was just right, and the Holy Spirit brought the rain to allow this Biblical truth to firmly plant itself and become more than just a platitude. To quote Marty McFly, "Heavy."

Matthew 26:39. "O My Father, if it is possible, let this cup pass from Me; nevertheless, not as I will, but as You will." I never understood the point of this prayer. Why pray for something, if God is going to do what he wants anyway? Last night the Spirit allowed me an understanding that my mind could not. It wasn't emotional, it wasn't fuzzy, it just was. Thank ya, Jesus!

Sunday, August 16, 2009

65 hours and counting.

No observable seizures in two and a half days. No exclamation point, however, as this is only another fragment. Today began our vigilant observation of Meg. From now until sometime tomorrow, we will be at constant attention looking out for any visible seizure activity. If her seizures have, in fact, been controlled, we will have the opportunity to bring her home soon. That is too significant an "if" for us to even consider getting excited. We see a fragment today, and tomorrow will bring another fragment.

We entered the room this morning to find a fussy, wide-eyed Meg. Her momma's voice calmed Meg's fussing. She ate really well at 6:00 a.m. and again at 10:30; she also takes her medicine like a trooper. She laid on Jen's lap for a half hour and wiggled and squirmed and performed several leg press reps against Jen's stomach.

I hesitate to give a score today, because objectively speaking, we are only up +2 or +3. Continue to pray for answers and for continued protection from the seizures in the cleft of the Rock. Thank you friends and family for loving this little girl as you all do.

Saturday, August 15, 2009

The streak continues.

Meg's last known seizure occurred sometime Thursday night. Doctors added dilantin to her medicines Thursday night, and this may have been the answer.

This morning, both doctors again examined Meg, and proclaimed that she is doing really well. Chatter of going home has once again resumed, this time from the mouths of both doctors individually. Dr. Bluejeans suggested Monday or Tuesday already, and Dr. Wisehair reiterated the sentiment, leaning toward Monday. Of course, all is still contingent upon Meg remaining seizure free, both to our eyes and to the trained observation of nurses and an EEG that is scheduled for Monday. We are again hopeful, but as we learned earlier this week, wait for the fat lady to sing before celebrating. There will be plenty of time for rejoicing once she is home.

Beyond this hopeful forecast, and we all know how reliable forecasts are, there is little news to report today. She has eaten so hungrily and has taken her medicine so obediently that the I.V. needle, which hasn't been used in days, has been removed from her head. She remains plugged into a monitor, but despite trailing a few small wires, she is almost an average newborn. However, if her first week of life as an individual is any indication, Meg clearly has no intention of being an average newborn, an average toddler, an average child, teenager, adult, or geriatric.

We are at least +5 today. We still await answers from Mayo Clinic in Minnesota. More fluid samples were sent yesterday. Continue praying for a long term solution please. And we need two more good days without seizures so Meg can finally return to her home. Home. The word means something drastically different than it did a week ago.

Friday, August 14, 2009

A step in the right direction.

After several hours with Meg today, we saw no visible signs of seizure activity. The nurses last night also reported no activity, and unless we missed some (which is entirely possible) Meg has gone nearly 24 hours without a noted episode. Perhaps tomorrow may bring more disappointment, but Dr. Whitehair may be approaching the right combination of medications for Meg. Meanwhile, tests for different metabolic causes continue to return with normal results, a few each day. We received training for a sleep apnea monitor today, a machine that will beep if Meg has prolonged periods without breathing. We will use the monitor just as a safety net. Doctors will download and examine the records that this monitor stores and determine whether or not it is necessary beyond four weeks.

Today, Meg woke for nearly an hour and a half and checked out her surroundings. She seems to approve of her parents more each time she watches us, although our goofy gestures and faces and ridiculous noises only elicit yawns and grunts from the obviously embarassed child, a response that will only intesify as she gets to know us better. This was a wonderful day for all of us, and one which finds our spirits lifted. Drs. Denim and Whitehair both gave favorable reports following their respective examinations of Meg. Again, her health is quite impressive; now to stop those pesky seizures.