“300” – The Allison Chronicles – Part 4

Some Notes:

While I have publicly testified about the events presented in this post, I have never revealed all the details (especially the one significant detail) to anyone in 35 years. Except, of course, to the Reverend John a few weeks ago when discussing whether I should write this post. I know that some people will be critical that I waited this long. Others will be critical that I have presented it now as fact. And that’s fine. I agree with you all. I won’t argue with anyone. But please understand that I never wanted to write this story, and it’s been painful to relive these emotions.

Also, this post is accurate based on the best recollection of the events. I do realize that medical technology and procedures have improved over the past 35 years. If I have made any technical or terminology errors, please message me privately.

Because someone, somewhere, surely needs to hear this …

In review, the doctor delivered the following prognosis the day after Allison was born:

1.    Your daughter probably won’t survive today.

2.    If she survives today, she probably won’t survive tomorrow.

3.    If she survives tomorrow, there is a critical time in two weeks that she will have to get through.

4.    If she makes it through that, she will live with severe brain damage.

We had made it through the first two hurdles fine. Allison was progressing well, considering the circumstances. I started to feel much better, and was hopeful.

But it was a false hope.

The doctor didn’t explain the complexities Allison would face at the two-week juncture because you are not expected even to get that far. And I didn’t ask about it because I was overwhelmed by the immediate danger. But the doctor didn’t say there “may” be a critical time. He said “is,” and almost two weeks had passed and now the cold reality was explained in very stark terms.

The cerebral hemorrhage Allison suffered causes the brain fluid to thicken. She will need a shunt inserted into her brain, the same type used for hydrocephalus patients, to drain out the contaminated fluid. If the fluid isn’t drained, pressure builds up in the brain, leading to a slow, painful death.

However, the doctor wants the thickness of the brain fluid to be at 200 mg/dL for this operation to have a good chance of success; he won’t even operate if the reading is above 300. If the fluid is above 300 mg/dL, you are caught in a literal deathtrap: An operation is needed to drain the thick fluid out of the brain, but the fluid is too thick to allow the operation. The body does generate new fluid every day and drains out what old fluid it can. So, the doctor will run an initial test to see how thick Allison’s fluid is and then run tests every other day to chart her progress.

On Thursday, they run the first test, and our family and friends begin praying that Allison will be able to have the operation that could save her life. My prayer is a little different than that, however. I am analytical by nature, and the Baptists instruct you to pray very specifically. I pray that the test will be at 300. This is prayed without ceasing. It is prayer fervently and repeatedly.  Over and over - 300, 300, 300, 300.

The first fluid is drawn on Thursday, and on Friday, we learn her fluid is at a reading of 720. This is not good news. 720 is a long way from 300, but it is only one data point. I don’t know how fast this fluid is draining until I get a second reading. But I do know we are running out of time. I continue to pray – 300, 300, 300, 300.

They draw more fluid on Saturday.  We wait anxiously Sunday for the test results. The phone rings just before 7 p.m. My wife takes the call, then turns to me and says, “The test came in at 690.”

Instantly, I realize the literal gravity of the situation. Now I have a second data point, but there is nothing to analyze. You can do the math without a calculator. The fluid thickness had only gone down 30 points in two days. It needs to go down another 390 points. At this rate, it would take 26 more days to reach 300, and I’m not sure she has another 24 hours. 

It is over. It is so over. There had always been that flicker of hope – that tiny candle burning in the night. But now even that light had been extinguished. There was only darkness. Even the shadow in this valley of death is now covered by the night. I am once again devastated.

“I’m going for a walk,” I blurt out, as I grab my coat and bolt out the door.

I am walking as fast as I can, yet I am not going anywhere. This is the only way to deal with the overwhelming rage. Of course, I was angry over my situation, but I had not at the time to deal with it because there was too much other stuff happening. This enormous fury had just built up inside of me and now it was being unleashed all at once. I am so enraged I can’t think straight. It hurts so much I cry for the first time in this trial. I’m glad it’s dark because so people can’t see how distressed I am.

I turn back for home after about a mile because if I don’t, I’m not sure how far I might end up walking. At that point, I have burned off most of the raw emotion and begin to think clearly again. But I am still enraged at everyone and everything, and especially at God. We had made it through long odds, and now after going through two weeks of hell, this was going to end with her slow, painful death. That is unacceptable to me. So, if prayer is loosely defined as “communicating with God,” then I guess I said a prayer.

I’ve have been brutally transparent to this point, but the contents of this prayer will remain between God and me. It is my worst prayer I have ever offered, but if God values our honesty, then it is also my best.

I am about three minutes from home when I finish telling God exactly how I feel. And suddenly, I am at peace. But not your typical peace. The peace The Book talks about that surpasses all human attempts to understand it. And this is a surprise. For the first time in two weeks, I am back in control of my emotions. I am willing to accept the inevitable no matter how painful it will be. There would be no more prayers for “300”.

That evening I start thinking about life beyond this horrible event:

What will the funeral be like?

How long will it take my wife and I to recover from this?

Will our marriage even survive this tragedy?

I go to work the next morning knowing there is a good chance my phone will ring sometime this week, and the struggle will be over. Of course, this is before the days of cellphones, so every time my office phone rings on Monday, I hold my breath before answering and then exhale when it turns out to be a dealer or salesperson on the line. It is a variation of Russian roulette played with a phone instead of a gun. This was going to be a brutal week, not knowing when that critical call would arrive.

But I didn’t have to wait long. Around 9:45 Tuesday morning, my wife calls.  Instinctively, I grab the edge of my desk with my right hand, bow my head, and close my eyes, bracing for the worst. However, my wife is calling to tell me the results of the Monday test. I had forgotten that they were even drawing more fluid. Why even bother? We were 390 points away from 300, more than double. More bad news would just add to the torture.

However, my wife is talking so fast that I can’t make out what she is saying. I ask her to slow down and repeat it. This time I can clearly hear her words, but I can’t comprehend what I just heard. I ask her to repeat it one more time. “The test came in at 300”, she says, slightly irritated at having to deliver the message a third time. “She’s scheduled for emergency surgery tomorrow morning.”

After the call ends, I sit there with my head bowed, holding the receiver in my hand, trying to process the inconceivable news I have just received. I am stunned, and I begin to shake (more about this moment in Part 5).

It takes a few minutes for me to regain my composure, and I inform my boss that I will be out of the office on Wednesday. While this is great news, it just means my two-week-old daughter can undergo delicate brain surgery, which has a limited chance of success.

Next, Part 5: (I Will Fear No Evil)

Fearing The Evil – The Allison Chronicles, Part 3

Please be sure to read Part 1 and Part 2 first … because someone, somewhere, needs to hear this

Summary: My daughter suffers a severe cerebral hemorrhage at birth and is not expected to live more than a day, or maybe two. After getting this horrible news, I go to the children’s hospital to see her.  

I follow the nurse down the aisle to the back walk where the most-critical babies are located. We turn the corner, and in the middle of the row, I see the name “Allison Ake” on the isollete. The nurse keeps walking, but I stop a good five feet away, stunned by what I see.

The nurse turns around and is surprised that I’m still standing in the aisle. She quickly backtracks and asks, “Can I get you anything, Mr. Ake?”

“Yes, I need a glass of water and a chair. Oh, and please bring the chair first.”

I answer her question, but my eyes never leave the isolette. Most fathers delight in seeing their day-old daughter, but I am staring at the most frightening scene of my life. There is my daughter lying in the isollete. Her arms are raised up, firmly against the sides of her head, her fists tightly clenched. Eyes shut, she struggles for every breath, and there are tubes and wires everywhere.

I can’t take another step forward. I’ve stopped instinctively, because I’m in a dangerous situation, like when you get too close to a blazing fire or a ferocious animal. But in those instances, you would back away or even run. And I want to turn and run, but I can’t, because the name on the isolette says “Allison Ake” and that means this one, no matter how damaged, belongs to me.

It is more than a gut-punch. It’s as if a warhead has been fired right through me, removing my gut, but leaving me alive to deal with the pain. I stand there frozen, but inside, my heart is racing as I absorb the stone-cold reality before me.  

The nurse returns with the chair and places it beside the isollete, because of course, I can’t sit in the aisle. I take the four steps forward and slide quickly into the chair as I feel my knees weaken. I sit slumped over, staring at the floor, as the nurse leaves to get my water.

The nurse returns, and I take a gulp. She asks me, “Mr. Ake, do you have any questions?”

Now you would think the obvious question is, “How is she doing?” But even though I have only been a father for just a little over twenty-four hours, I am in full-dad mode.

“What’s wrong with her arms?” I ask. 

“The cerebral hemorrhage your daughter suffered causes intense seizures, she explained. “She put up her arms to fight off the shocks to her brain, and they locked in that position. It’s rare for them to survive seizures that strong, but she did. She’s a fighter.” 

     

I stare at the nurse in disbelief, just as I had when the doctor had given me the prognosis earlier. The nurse returns to her duties. I sip some more water, and the emotions start raging out of control again. I want to scream, but I can’t because that would distract the doctors and nurses doing their jobs in the ICU.

I turn and look at Allison, my face inches from the isolette –

Breathe in … Breathe out … Breathe in … Breathe out

Here, time is measured in breaths, and at the back wall of the ICU, every breath is vital.

I feel some fatherly pride. This tiny, day-old kid had fought off certain death. And it is not surprising that the offspring of two strong-willed, stubborn people had not died when she was supposed to. I vow to stay there with her all night – if she makes to the night.

However, I wasn’t prepared for the intense situations that occur on the back wall of the ICU. The monitoring alarms for the critical babies sound every fifteen minutes or so at random. Every time it is an emergency, life-threatening situation, and six doctors and nurses rush to the isolette to keep the baby alive. As things stabilize, one by one, they leave to tend to the other infants.

It is like sitting in hell on earth. Every time this scene is repeated, it shocks me to my core - not knowing if that baby is going to survive and not knowing if Allison’s alarm will be the next to sound. It is a psychological torture chamber that I wouldn’t wish on my worst enemy.

In that environment, I am unable to stay with her all night; I can’t even last for two hours. I take a long look at Allison before I leave. I realize it might be my last look, but I sense I would be coming back. I return to the regular hospital to report back and comfort my wife.

I go home that night to an empty house, feeling much different than when I left nine hours earlier. I am alone and horrified. I lie down in bed terrified, and six hours later, I open my eyes, and I remain just as terrified. I call my wife and am relieved to hear that Allison has made it through day one.

I return to that torture chamber on day two. I still need the chair, but I don’t need the water.

And she’s still breathing …..

Breathe in … Breath out … Breathe in … Breathe out

But it’s still brutal to sit in the ICU again with those monitor alarms going off. I last about the same two hours again.

King David writes in The Book: Yea, though I walk through the valley of the shadow of death, I will fear no evil.

And you don’t grasp the magnitude of those words until you have to take that walk yourself. Because I am surrounded, maybe engulfed, by evil every step that I take. It is ever-present, ever threatening, every second of the day. And David is a much better man than I, for I fear the evil. I fear the evil with every breath I take. I am more afraid than I have ever been in my life.

But Allison does make it through day two. The immediate threat has passed, a huge victory given the dire odds. The next eleven days bring a series of small victories. She lowers her arms to a normal position. She opens her eyes. And her isollete is moved a few rows forward, off of that perilous back wall.

I start to feel much better about the situation. I can breathe normally again at last. I can finally see some light at the end of this dismal tunnel. My hope is rising. And I feel that exhilaration of beating those terrifically long odds - when everyone literally leaves you for dead and yet you survive. We had narrowly dodged two bullets, and I feel bulletproof.

However, if you remember the prognosis, there is a critical point that happens at the two-week juncture. Of course, I forget about all about this part because I have been so focused on the progress she is making day-by-day.

But a third projectile has been fired at Allison. And this shell is not a bullet, but a missile. There will be no dodging this one.

Next: Part 4 – “300”