A stocky man in sweaty green scrubs sits ponderously down on the brightly colored vinyl bench across from my wife and me. His entry is the first interruption to the silent hum of the tiny room, decorated with a few watercolor prints, reminiscent of a budget hotel. He peels off his surgical cap, fluffs his thick fingers through his dark brown hair and exhales a relieved puff. A little body odor finally settles the plummet back to humanity, down from the loftiness of his expertise. After a few heavy breaths, he looks up and says with one shake of his head, "That was a sick heart. We got her taken care of, though."
Never have I heard more beautiful poetry.
My body swells with a pleasant warm stretching, away from the pensive pose I had maintained for several hours in the larger, louder waiting room of the children's hospital.
But how did I get here? And who is this beautiful poetic hero I see before me?
I'd come to really detest waiting rooms, with their pernicious power to stimulate their unique sort of forced lethargic tension. I had spent a fair number of hours in them over the twelve months since that most harsh introduction by way of Kristen's purgatorial ICU experience. It had become like the kid in me sitting next to a neighbor's pit bull, assured in word, but not in feeling that it wouldn't really bite.
Twenty-seventeen, the year of the heart, continued after Kristen's recovery of a few weeks, spent at home. Our Margaret was a happy little baby, content to spend hours on the floor between bottle feedings within a circle of toys an arm's length in radius. She had been forced to give up nursing due to drugs in Kristen's system given to help heal her heart and brain. Maggie didn't seem to mind. She laughed, played, and smiled.
Then she started getting tired more easily. Maybe she was just getting bored with the selection of playthings my entry level wage and resulting shoestring family budget afforded. All the toys for two little girls fit in a small metal tub. Chloe loved making her laugh, by giggling right at Maggie, sometimes saying, "Cheese!"
We had many happy moments in that tiny living room. The big, overstuffed couch almost reached from wall to wall, causing legs outstretched to nearly block the way of walking past through the room.
Kristen had barely regained the ability to lift Maggie when she began insisting on being held much of the time. Gradually she showed less interest in eating.
A local doctor's visit identified the probable cause: allergies. It was summer. It made sense. Her symptoms began suddenly enough. My wife remembers this as the first time she ever got sick. Allergy medicine didn't help her lingering lethargy. Continued advice to give allergy medicine was reluctantly accepted.
A month passed, with no improvement. Maggie had seemed to be growing alright. We just loved those puffy little cheeks! Then she really slowed down. She started having difficulty holding her head up. The times when she could eat, she became sweaty and exhausted. She started holding her little fists up in front of her shoulders like she was at a bench press. She grunted and seemed to be working hard just to sit still.
Her lack of eating prompted a referral to having her seen at a failure to thrive clinic. The appointment was lost, and another attempt resulted in another month's waiting. We couldn't wait that long. Kristen insisted that some expedited blood tests be performed, and their results mandated Maggie be admitted at a children's hospital. We expected to have her put on an IV line to get her some hydration and nutrients while the cause of her long illness was determined. This was done, and shortly after a very kind doctor came in.
She calmly asked us a few questions, "Does she always want to lay on you, mom? Does she get sweaty when she eats? Does she hold her hands like this and grunt?"
"Yes... yes... yes."
"Okay, we're going to take her down for a chest x-ray now."
It seemed to be only minutes before we heard, "Your daughter's heart is enlarged quite a bit. We'll be taking her downtown to the main hospital, right now."
A short ambulance ride ended at the pediatric intensive care unit (PICU). Drugs to support heart function were immediately initiated.
This was the night Maggie crashed, and may have died if still away from the hospital with its miraculous medicines. The plan was to support her heart and see if it would retract to a normal size. It would not. It had gone too long in its grossly enlarged state for it to return.
It may have been some kind of infection that triggered the dilation of that little heart. The inflammation and overgrowth might have been countered if we hadn't gone so long thinking it was allergies making her sick. But now, it was too late to worry about being too late.
I remember sitting with Kristen in the PICU waiting room with its toys and cheerful decorations. I had returned to the hospital after a few days of working back in the small town where we lived.
"There is nothing left to do for her heart. She will at some point need a transplant," Kristen told me.
"Okay," I didn't hesitate. I knew we would be going to do whatever was available to help our little one. I didn't know everything involved, but I knew I had been prepared to step up and be a leader in my family in the face of all the coming difficulties.
Kristen's cardiac arrest and the difficult struggle I had through it had put me into a strange kind of expectancy for the unknown. This news about Maggie fit the bill. It didn't shake me.
These experiences became opportunities to live out something I had learned long before. Over my life, I have often thought, "What is honestly the worst thing that could happen?"
Being prepared for that outcome always allowed my mind to rest, because it always meant one of two things. Either that outcome would come to pass, and I'd already have anticipated it at least mentally, or that something else would happen, less severe, and I'd be pleasantly surprised.
I don't enjoy surprises a lot. This approach is my way of minimizing unknown surprises by relegating them to the less likely, but positive side of expected possibilities. The dark spectrum of possible outcomes in Kristen's earlier situation had defied my best efforts at maintaining this kind of control over my feelings.
So, in this situation, what really is the worst that could happen? An innocent child dies: my child. What horrors does this hold for me? The death and grief aspect I've mentioned in The Year of the Heart, Part One, and the other aspect, dealing with the fate of the person dying, is similar to what I thought about Kristen and her readiness to meet her Maker. Maggie would be no different, except that her glorification would be even more simple, by her not having reached the age of accountability in the flesh. Jesus' atonement would perfectly apply, with no need for repentance. She would be safely guarded by Him and eventually established in the mansions of His Father, to go no more out. What a wonderful perspective to have been given by my Savior!
Having these truths fixed in my mind enabled me to continue on in faith, knowing that whatever happened, it would be okay. It would not all be easy or comfortable, and I certainly didn't expect bliss, but it would be okay. The Lord would take care of me and my family. He would manage all the things I had no way of knowing, and I would have strength through His grace to take care of the measly things I could manage as my part.
Being in covenant with God is to accept Him as our God, meaning He will take responsibility for the things we have no power to manage. He will arrange things for us "behind the scenes," if we diligently do as He's commanded. The Savior's promise is to exchange the crushing yoke of the world for His yoke, which is easy. Christ's burden is light. (Matthew 11: 28-30)
A convenient peculiarity of English allows us to draw another conclusion:
Seek to carry light, as the Savior does.
As I've sought to be a light to others, the Lord has allowed me to temporarily forget my own problems and find relief. We don't indulge in some unhealthy kind of denial or prolongingly ignore issues, but these momentary respites can be an important part of the work required to fully overcome the difficulty. Show the Lord you are willing to serve others, no matter how small the act, at any cost of time, convenience, or exhaustion. Hold the door as others come into the room. Offer to move if it looks like they could use your seat. Fill someone's water bottle.
Please don't misunderstand. This is hard, I know.
Be kind to yourself. Resist voices, including your own, that may tell you what or how you "should" be feeling about something. Lots of well-meaning people say awfully stupid things in efforts to encourage. Usually comments beginning with, "At least..." are of limited value. "At least your other kids aren't dying... At least you don't... At least you do... blah, blah, blah."
I think I know what this kind of minimizing comment is attempting, but trying to turn someone from the issue at hand through some pithy pep talk on counting blessings may fall short. I wish people would understand the following as clearly as I've learned it:
Some people want to BE helpful. They just do; no matter what it looks like, or how they feel about it.
Others want to FEEL helpful. They like the good feeling they get when their help is well received, and conveniently given.
Still others want to APPEAR helpful. No comment.
Ponder these differences for a while.
Also, hold to the truth that people of faith are allowed to grieve, allowed to feel angry at God, allowed to be confused, hurt, allowed not to "be strong." Knowing more regarding the purposes of life and death and God's plan for His children does not negate the very real and possibly devastating depth of loss, sadness, grief, or pain.
"God just needed another flower in His garden." Have you heard this or something similar? Please stop saying it. Please stop speaking for Him in this matter you know nothing about. Finding purpose and peace in loss doesn't come from platitudes like this. BE helpful. Support the person by helping them with the real grief work only they can do.
If their grass needs mowing, just cut it. If you see they need food in the house, just go and buy it. Don't place additional burdens on those experiencing high stress by asking them to let you know if there's anything you can do for them. Don't put it on them to find something for you to do. If they do let you know something, do it! Don't insist on doing only what you would like to do for them. BE helpful.
If you’re the one in distress and someone says something thoughtless or insensitive, forgive them. If they knew better, they’d have said it better. Our culture does not teach us how to give meaningful support in trying times. On the whole, we’re very weird about death and dying. Many are so afraid of knowing what to say. My advice is, most of the time, don’t say anything. Be present with someone as they think and feel the thoughts and feelings they need to process. Don’t try to take those away from them.
I've been talking to you from my training in grief support, normally applied to those suffering a recent loss like a death in the family. The same principles apply to anyone facing medical crises or other stressful circumstances.
Let's go back to the tiny private waiting room, shall we? Oh, don't take me back there! This time, though, it was different.
I sat and beheld a wonderful vision: a man with uniquely developed skills and abilities who was in the right place at the right time with the right team to bring about a miracle. The tired, sweaty epic poet was the surgeon who replaced my Maggie's overblown, worn-out heart with a new one, recently taken from a grieving family in their storm of uncertainty and loss.
This was April 27, 2018. Maggie had waited since October 2017, when she was listed officially as a heart transplant candidate. In the meantime, she had a different surgery, under the same skillful hands, to install a ventricular assist device, an external pump that did nearly all the work her failed heart could no longer manage.
This little pump was driven by a larger machine, looking like a small freezer chest. This big blue box on wheels had sophisticated equipment that pushed air in and out of the pump hanging from Maggie's belly, driving a diaphragm back and forth.
The pump itself was connected to Maggie by two clear hoses. One of these drew blood in from the left ventricle (muscular pumping chamber) and pushed it back into the aorta (main artery), like the most prolific arterial bypass imaginable. The blood was visible through the clear plastic structure of the pump. It was amazing to watch the swirl as each rhythmic throb sent this life sustaining liquid on its way. Being on this pump, or LVAD (left ventricular assist device) meant only specially trained nurses could be with Maggie. They checked it regularly with a flashlight in the dark for clots that might form inside.
The most interesting part to me was the problem created by the two soft silicone tubes that connected the dying heart to the outside world. This tubing had to be very flexible, so that bending or moving would not push or pull on Maggie's heart. This flexibility meant that Maggie bending over could easily kink one or both of the tubes. This is like an instant cardiac arrest, with full stoppage of blood flow.
The machine running the pump would blow an alarm at the first instant every time this occurred. She felt so much better having the advantage of healthy blood flow, that her energetic movements made for a stressful four months for those poor nurses who watched constantly, twenty-four hours a day, with eyes on that pump. Maggie quickly added a new technique to her repertoire of skills on how to work a room. Over her time in the hospital, she had become accustomed to small crowds of doting nurses and doctors who would ogle from the doorway as she smiled and teased. She figured out that lifting her VAD could pinch off the hoses and sound the alarm, which really got a rise out of anyone in the vicinity!
She got to where her resting heart rate was showing at around 120 per minute, as her tired round heart feverishly tried to get her some blood. It made me think of something like what it might be like to lift a hammer a quarter inch above a nail head in a quick repeated tapping motion, trying to go into solid rock. It just didn't have the power to get the job done.
Maggie's long-awaited day coincided with a regularly scheduled music therapy session. The therapists with the instruments Maggie had grown to love showed up at her room just as we were preparing to go to the operating room. They had no idea we had accepted the offer of a donated heart, and would be having a transplant that day. They were especially joyful, and boldly sang and played the guitar to the tune of Happy Birthday:
"Happy Heart Day to you, Happy Heart Day to you, Happy Heart Day, Dear Maggie... Happy Heart Day To You!"
Maggie joined in, vigorously shaking bright green maracas. When the time came to roll down the hall, Maggie put up such a fight to keep those maracas, they were the last thing we heard of her as she faded into the hushed background noise of the PICU.
The hours of waiting concluded with that brief interview with the mortal angel in green scrubs. I still can remember the feeling I had looking at him, thinking how he probably had no idea of the gratitude and admiration I was internalizing in my moment of quiet listening.
Returning to Maggie's room, there was no jubilant smile, no bright green maracas. Again, as at the time her VAD was implanted, the room was filled with pumps and monitors. Wires and tubes spread out from a small hospital bed. A large bandage covered a little chest, itself covered by a large hand-drawn teddy bear, holding a heart shaped pillow.
There was no VAD; no rush of cooling fans or alarm telling us about kinked hoses. It seemed strange for a while, that Maggie now suddenly had a healthy heart, dutifully fulfilling its role as it had for its original host, the child who had grown it.
Shortly after the surgery, we noticed Maggie's head and shoulders were turning a mottled blue. It was as if her new heart was blocked from receiving old used blood from the top of her body. This happened because her new heart's SVC (superior vena cava) or upper incoming vein was tiny compared to her old heart with its exaggerated features. A stent was placed to open up the SVC, and her blood began draining into the top of her new heart just fine.
I remember watching Maggie as her eyes rolled up in her head and alternated back and forth from left to right. Her body tensed and she whimpered as if in pain. It seemed like a seizure to me. Then it happened again. Some checks confirmed it was caused by a stroke.
Her little brain was sharing in the trauma caused by her heart failure, as some small blockage like a clot or air bubble did its damage.
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Heart failure doesn't end with a transplant. We willingly traded one set of problems for a different set of more manageable ones. There was still a long process ahead. One thing to do was teaching Maggie to eat. She had been on a feeding tube so long, she had missed the typical window of time for learning how to chew and swallow. She never felt hungry, never had to eat. Her food pump had been as faithful as her VAD. She never had to think about it.
Following the transplant, we had to figure out the right combination of drugs to suppress her immune system, which saw her new heart as a dangerous infection; something to wall off, starve, and destroy. She came home requiring thirty different doses of various medications throughout the day.
I wish my wife could get an honorary nursing degree for the knowledge, skill and expertise she's gained by doing all the leg work of taking care of that little Maggie at home, before and after the transplant.
Today, there are really only two main drugs that keep Maggie's immune response at an appropriate level that allows some protection against infection without attacking the heart.
She attends school, eats (mostly instant Ramen and chips), and does everything a little girl should be doing. The team that manages her care is excellent. They are conscious of the overarching reasons for putting someone through all these scary experiences. It is not so we can seal Maggie up into a plastic bubble, overly fearful and overprotective as part of some cold, clinical science experiment.
We gave her the transplant so she could live, play, grow up, learn, fix mistakes, get into trouble, and all the other things common to life well lived.
We do maintain a few precautions, mainly avoiding others known to be sick, and large groups of people in confined spaces, especially during flu season.
Covid-19 has shown itself to be no big problem for us so far. The virus doesn't seem to be very hard for Maggie to overcome, and the concepts of social distancing, quarantine and hand sanitizing came as second nature, because we had been doing those things since Maggie came home in the summer of 2018. Other things are more minor still. Maggie has to have cold lunchmeat heated before eating it, she can't have soft cheeses or bean sprouts; basically eating and treating animals as if she's pregnant her whole life. No touching birds or reptiles, no cleaning litter boxes.
We can't have pets in the house, which is no problem for Kristen or me. Maggie can't go freely into "wild" water such as ponds, lakes, or rivers. Good thing we have chlorinated "tame" water! She and Chloe sure love swimming! We plan to set up a small aquarium. It's easier to responsibly keep fish since they stay separate in their own little world.
This ordeal has been hard on Chloe, who was passed around to various relatives in the chaos of uncertainty and upheaval beginning with Kristen's cardiac arrest. She is such a great sister! She has a special connection to Maggie, as they have both shared in hard things that have burned away some of the fluff from their lives, and focused the whole family on what is most important.
That's turned out to be among the great lessons from this year of the heart:
Difficulties and struggles through adversity cause us to retract from the normal everyday expansive existence we are used to. We are forced to focus on what sustains us, the essence of living. Tough times force us to turn one way or the other. It’s better to turn towards the light, to look up. There is always Someone there, looking down.
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You can do hard things. See this short video told by a former cardiac surgeon, turned prophet of God:
