It’s amazing how your whole world seems to shift when you suddenly see that crack in the door that seemed so thick and dark and impenetrable, but there it is, this crazy brilliant blaze of light, flooding, arching, enlivening the air around you! Your foot steps out with greater stride. You yearn for a jaw and muscles of cheek that would enable a bigger smile, a fuller beam from your face. You want to stop people and tell them, you want to lift your throat to the blue, blue sky and declare, “My kid might make it!” I’ve been stopping to smell the flowers, the ones that smell like jasmine and fragrant the air going up the stairs to the parking garage. The sound of birds in the morning, birds in the evening, they now sing a song you feel yourself singing – a song of declaration that life cannot be held down by death. I careen my neck backward and stare up at the blue of sky broken with criss-cross of pale pink blooms, thousands of petals on cherry trees. You rejoice that one can buy daffodils and tulips, even if you cannot because you inhabit a world where no plants are allowed – but they are there, exulting that spring has come, wild, exuberant, lush spring has come again to the world!
My rejoicing at the coming spring came at the very first signs of its presence, at the crocuses pushing through the soil, at the tender buds on seeming dead trees, at the sound of that first robin. Spring makes my hear soar, soar. In the midst of my darkest days over the past few months, spring has quickened my step, reminded my heart to hope, to be on the lookout for life, for rejuvenation, for overcoming the cold grip of seeming death.
But today I was amazed as I walked up to the front of Metropolitan Market – the absolute extravagance of life just exploded with glorious color around me. I wanted to tell the people to stop and stare and gape and be in awe of how rich and overflowing this life is! Look at this life! It is a wondrous, wondrous, mind-blowing sensation to realize your child, the one seemingly doomed to death, might just make it, might just have a way through. I tell myself to restrain, to not hope too much. The end is yet veiled. But I DON’T CARE! I am full of swirling, bubbling joy at the hope, the possibility made more tantalizingly real, that Allistaire Kieron might just do what was said probably couldn’t, wouldn’t.
My dad, who spent the weekend with Allistaire, texted me as he left the hospital yesterday, that Allistaire would have an echo today. Sudden heat of fear swamped over me. I thought it was going to be a chill Monday. I thought I wouldn’t have to worry about another echo until next Monday. I scanned and scanned, running over all the details I knew about Allistaire, looking for a glimpse into today’s echo results. What I knew is that Allistaire’s appetite had continued to improve and her energy level was nearly off the charts. The girl was so full of wiggling, giggling life! Signs of the wean off Milrinone failing would be fatigue, lack of energy, nausea, lack of appetite, increased BNP, increased heart rate, decreased profusion, weaker pulses, slower capillary refill, worsening kidney function numbers – none of this – there was not one indicator that the drop from .75 last Thursday to .6 had any negative effect. If anything the girl just seemed like she should explode out of the ICU out onto a playground.
This morning I awoke with a prayer that is prayed nearly everyday as my alarm goes of at 5:37am. “Lord, hold me up, come what may. Lord, oh God, well you already know what I so desperately want – you know I want Allistaire’s heart to regain its strength so she can go onto have her transplant and onto life without cancer. Help me to yield to you. Oh Lord, hold me up, hold me up, come what may.” The labs showed an ANC of 808, a BNP of 669 and great kidney function numbers. Did I dare hope that today’s echo could be, well, could it be, maybe, a wee bit better? Such a frightful thing to hope, to stick your neck out rather than roll into that protective ball like a potato bug.
The echo was wrapped up by 9:19am and I was comforted by a giant font of a heart rate on the monitor that came in about 115 beats per minute with a respiration of about 20. So, so much better than two months ago when her heart rate was in the high 180s and her respirations in the 60 plus breathes a minute. Then the hours wore on and on. Allistaire’s been popping up each morning about 8am and has been in rounds with myself and the doctors nearly every morning. She loves it. They love it. I love it. I don’t think a patient in the ICU has ever participated in rounds before. But the 8am wake-up makes the day seem two hours longer than in times past. I had lots of time to work on writing a pile of thank you cards that had been harassing me for weeks. I asked the nurse nearly every hour to check the computer to see if the echo results had been posted yet. By 1:30 I asked the nurse to page the cardiologist to let her know Allistaire naps at 3pm and I’d really like to hear from her by then. At about 10 to 3 she said she’d be there in 15 minutes.
Jenn, the Child Life Specialist, was in doing some medical play with Allistaire where Allistaire gets to do to a doll all the sorts of procedures done on her and she and Jenn talk nonchalantly about it while Jenn gathers intel about what Allistaire prefers when she gets a shot or has to have her lines flushed. Allistaire is joyfully oblivious and just likes putting bandaids on the doll, now named Jewel. I know the time is coming, it’s coming, at any moment Dr. Kemna is going to walk through that door. I suddenly realize it could be worse, oh what if it is worse? How utterly disappointing. I pray. I remind myself that God is in control of every detail of Allistaire’s flesh. No matter the results, they come from God’s hand. He will be the one handing me the results of this echo. Will I look beyond this moment, beyond this detail of what I so desperately want. Will I lift my eyes and look out, up, wide, high, deep, not just temporal, but eternal? Hold me up Lord. Hold me up.
When Allistaire spies Dr. Kemna, she immediately dives underneath her blanket, a quiver of barely constrained glee. She has clued me into the game we must play. Jenn and I begin to fear the soaring of dragons looking for some tasty girl to munch on. Oh dear! Where can Allistaire be? Oh it looks as though the dragons already got her, she is nowhere to be found. The blanket is a roiling flowered sea of five-year old delight with periodic poking out of legs and little fingertips gripping the edges. Dr. Kemna joins in and only amps up Allistaire’s joy. Finally she emerges and Dr. Kemna listens to her heart and I restrain myself a few more seconds from demanding the only number I care about today. Finally, finally she turns.
Dr. Kemna tells me she doesn’t think Allistaire’s heart has improved as much as the number indicates. She has an ejection fraction of 35 (up from 21 last week) and a shortening fraction of 15 (up from 11). My heart leaps and squeals with unfettered joy! In further conversation, Dr. Kemna tells me that Allistaire’s heart does look a little better, but she’s not so sure it looks as good as an EF of 35, maybe more of an EF of 29. Huge smiles! Massive elation! 29?! That’s awesome too! I mean, good grief, 35 is spectacular but even if 29 is the conservative number – that is so totally glorious! She says there is a clear improvement from the echo three weeks ago when her EF was 11 and the most clear improvement is that the mitral valve looks better. Apparently, once the mitral valve begins to go, as was so clear on that awful echo three weeks ago, the heart just begins to lose steam and try as it might, it just gets worse and worse. Once the heart is so dilated that the mitral valve begins to fail, the blood regurgitates back into the chamber and efficiency is lost. This makes the heart have to work harder which dilates the heart still further, only worsening the whole situation. But Allistaire’s mitral valve is on the mend and this, Dr. Kemna said, is the most encouraging sign for her heart. The other great thing is that Allistaire is still not even on the maximum number of meds that may be able to help her heart recover. As her dose of Milrinone goes down, the cardiologists are hoping to add Isosorbid dinitrate & Hydralazine. Once she is stably off Milrinone, they would add on Carvedilol as well. I’m all for as many option to help sweet girl’s heart as we have available!
As Dr. Kemna gazed at Allistaire, now frolicking to an even greater degree with Jenn and Ashlei, our social worker, she asked what is keeping Allistaire in the hospital. “Milrinone,” I said, “only Milrinone.” She’s off TPN and lipids and is successfully getting in enough fluids and calories each day, her neutrophil count is far over the needed threshold of a minimum of 200 and she is taking all meds by mouth with the exception of one dose of Lasix each day which can easily be converted to by mouth. Even her chemo, Azacitadine, which is set to start sometime this week, can be given out-patient. Dr. Kemna agreed that Allistaire is definitely ready to take the next step down in her wean off Milrinone and ordered the dose to drop to .5. When the heart failure team met last week, they all agreed that Dr. Hong’s proposed .1/week wean was far too slow. A typical wean is in drops of .25 every couple of days, “So,” Dr. Kemna told me, “a .1 drop every one to two days is still very cautious.” From what she explained, often you can go a bit quicker in the wean in the middle of the doses and then just slow down more when you get toward the very end. At this point, she will be checking in on Allistaire each day and will reassess whether or not she can drop to .4 either this Wednesday or Thursday. “If she continues to look this good, she’ll have no problem with the next drop,” Dr. Kemna told me.
Bright, crazy beautiful beam of intoxicatingly beautiful light! Oh, and Allistaire is no longer a baldy top. She’s more of a fuzz top now. So soft and so seriously adorable. Thank you God. Thank you!
And here’s a little gem for you to enjoy – Allistaire as a star in a short bit on PBS about music therapy 🙂 Click HERE