Miriam T.
Erev Yom Kippur תשפ״א
As every year, the day is very hectic. I sit for a few minutes though, reviewing in my head the events of the last few months. I am overwhelmed by the enormity of what has happened to me… my family…the world. COVID-19 has overtaken everything we know as normal. For my family, however, our personal journey through this mageifa gave us all the opportunity to witness, before our very eyes, nissim geluyim, the effects of the power of tefillah and the benevolence of the Ribbono Shel Olam.
This is our story.
EARLY MARCH, 2020
Since January, we’ve been hearing about this virus in far off places, with devastating results. China. Italy. But it seems so far away. Everyone, even the medical community, is trying to understand what is happening. We don’t start hearing about “community spread” in the US until late February. For most of the general population in Brooklyn, even the isolated cases in our backyard, Westchester County, seem remote. Suddenly, it seems to be creeping closer and closer. We are inundated daily with new norms. Elbow taps, no handshaking. Recommendations to minimize socializing over Purim. I begin to pay more attention to the warnings. My son, Shmuli, 21 and with Down syndrome, has pre-existing medical conditions that put him in the high-risk category. Anxiety starts to take over my typically pragmatic self and my only priority now is to keep my son safe from this mystery disease. I tell my married children and my other regular orchim that we will be going solo this Purim. No guests this year…shalach manos exchange at the threshold only.
As an RN (registered nurse), I am glued to every clinical report but there’s no clarity in the data released. On the day after Shushan Purim, while the mayor and governor are still telling the city to continue patronizing museums and theaters, I tell my bosses that I can no longer come into the office and will be working from home. Before this becomes part of our regular vernacular, I put my family into quarantine. I stop sending Shmuli to yeshiva. My household is now on lockdown. No one from the outside is allowed in. We all understand the risks and we have one goal. We need to keep Shmuli safe.
SHABBOS, MARCH 28, 2020
Shmuli wakes up with a fever and a hacking cough. We know the sounds of that cough very well….pneumonia. After Shabbos, Shmuli’s doctor prescribes antibiotics that would cover pneumonia and overlap with the day’s recommended COVID regimen…just in case.
As the week progresses, Shmuli’s symptoms get worse. By Wednesday, he’s barely rousable. He no longer can swallow pills and he needs to be forced to drink. Tylenol keeps the fever down for just a short while before the fever spikes again. Medical advice discourages the use of Motrin. We are in constant contact with Shmuli’s doctor, who in turn is in touch with the local hospital’s PICU (pediatric ICU). We are advised to do all that we can to manage his care at home and if possible, avoid a hospital admission. Luckily, we have an oxygen concentrator. We do our best, waking him every two hours around the clock to give him fluids and monitor vital signs. But Shmuli’s condition continues to worsen. By Sunday morning, I know Shmuli needs more care than what we can possibly provide at home.
The media reports that hospitals are overrun and not handling the patient surge. There are reports of critical equipment shortages. The coveted life support equipment will be given to the patients the hospital deems most viable. Under no circumstances is anyone, except the patient, allowed into the hospital. All patients are to be dropped off at the door.
My head swirls. Selection lines for equipment? A random hospital worker will determine who gets a chance to live or worse, who will be condemned to die? Who will choose a young man with Down syndrome over a middle-aged person of typical intelligence? Leave him alone at the door? Shmuli is high functioning but will never understand why I am not coming into the hospital with him.
I speak to Shmuli’s PCP. We agree Shmuli needs to be hospitalized, but I’m very clear that there is no way I can leave Shmuli alone. If I cannot come into the hospital with him, I will turn around and we will go home. And whatever happens, I will accept as Hashem’s will.
The doctor tells me to sit tight until he calls me back. Two hours pass. He calls. The Chair of the Pediatrics department and the Director of the PICU have agreed to accept Shmuli as a patient on their unit and will allow me to stay with him around the clock.
My son, who is a Hatzoloh member, responds to the call. We are on our way, fully aware that this may be our final journey.
I leave my husband, who’s developed a severe case of Covid pneumonia as well. He too is very sick, but is being managed at home. He has no idea how critically ill Shmuli is.
Neis #1. Hashem has put kindness into the hearts of strangers, the heads of the Pediatric department, guiding them to choose compassion over the harsh State edict that leaves thousands to face hospitalization and worse, alone. It makes no sense…but all I keep on thinking is…Thank you Hashem.
APRIL 6, 2020
After a long afternoon and night in the ER, we are finally admitted to the PICU. Shmuli is sedated and on high flow oxygen. Without any pleasantries or introductions, one of the doctors looks at me square in the eye and tells me “You need to understand that your son is very sick and will most likely die.” I don’t know where I get the temerity, but I look right back at her and introduce myself and my son. I also proceed to tell her that while I am keenly aware how ill my son is, there is something greater in this universe than me and her. We all have our jobs to do, but it’s not over until He (pointing upwards) says so. And with that….our long ordeal continues.
By evening, Shmuli’s status deteriorates and he is put onto a ventilator. His lungs are completely opaque from the pneumonia. He barely has a blood pressure. He’s got central lines, arterial lines, on various life support machines and is on no less than eight IV’s to try to sustain life. His condition is critical.
It’s very important to me that the hospital staff understand that Shmuli is not “Covid in Room 1” or worse, “Down’s with Covid in Room 1”. I hang up some pictures of Shmuli that I had in my bag; pictures of him doing the things he loves; hanging out with his nephews, visiting day at camp, playing guitar, listening to music. I place his Ipod near his ear and play it on a continuous loop. I need them to understand that Shmuli has a full and active life. He is not dispensable.
LEIL SEDER
The situation seems to get worse each time the doctors enter the room, always reporting another complication. I look around. No Yom Tov finery. No glimmering candles. Shmuli is heavily sedated. All I have is a box of matzah and some shelf stable provisions. The bikur cholim room and all volunteer activities have been suspended. What’s left to do? I pull out my Hagaddah and holding Shmuli’s hand, I begin saying the text out loud. I have to believe he hears me. He loves the Seder. I want him to know he is not alone. I’m up to Dayenu when the nurse comes in and tells me I have to leave the room. Something about needing to change his central line. I ask for a few more minutes but she says no. I’m sorry Shmuli. We’ll finish singing when they let me back in.
EREV YOM TOV SECOND DAYS OF PESACH
Shmuli remains very ill. Life supports are set to the maximum settings. His blood pressure is very erratic, swinging within a 5-minute span from critically low to dangerously high. This goes on all night. In addition to the pneumonia that has completely infiltrated his lungs, he is now septic due to a hospital-acquired bacterial infection. He’s had adverse reactions to the experimental anti-virals he was given so the drug regimen is stopped. The doctors say they don’t have much to pull out of their bag of tricks. All we can do is hope.
ISRU CHAG
We contact Rav Chaim Kanievsky shlita through our cousin in Eretz Yisroel who is a close friend of Rav Chaim’s grandson. Rav Chaim advises that we add the name Chizkiyahu; and now our friends and relatives the world over are davening for the recovery of Shmuel Chizkiyahu ben Chaya Miriam.
APRIL 24, 2020
A few days ago the doctors asked me to consent for a tracheotomy. There’s no sign of Shmuli getting off the respirator any time soon and this is the next phase of long-term ventilator care, typically done 2-3 weeks after being on a respirator. I understand the ramifications and sign. I’ve read articles that COVID patients actually improve once trached. I try hard to put a positive spin on this.
Shmuli should have been trached two days ago. It didn’t happen. He developed a fever of 106.1 the night before the procedure. He is now septic with MRSA.
These last few weeks have been so devastating to our community. So many losses. So many tears. I am overwhelmed by the outpouring of tefillos from all my family, friends and total strangers. My colleague at the erev Pesach bris of her first boy after a K”AH house full of girls, who texts me right before the milah to tell me she has Shmuli in her tefillos at that auspicious time. The young girl in my office who buys a letter in a Sefer Torah in the z’chus of his complete refuah shelaima. The dozens of women, some of them total strangers, who answer the chain request of my daughters and daughters-in-law and commit to multiple cycles of Shir Hashirim and countless rounds of Tehillim Yachad. Counselors from Shmuli’s summer camp, spread across the entire US and beyond who join a nightly phone conference completing sefer Tehillim each night. The Rebbeim, adminstration, talmidim and parents of Shmuli’s yeshiva, Yeshiva Bonim Lamokom, who daven for his speedy refuah.
The days and nights at the hospital are very long. I am here alone. No visitors or outside contact. I have a lot of time to think…to daven…and talk to Hashem, one on one. This pandemic that is wreaking havoc on an entire world can only be stopped by Hakadosh Baruch Hu. My son’s refuah can only come directly from Him. I find strength in random tefillos that come to mind…אין כאלו־ינו, various Selichos. And it becomes crystal clear to me…I am not alone. He is with me. And He is with my son. The doctors tell me that by all accounts, they don’t understand how Shmuli is still “hanging on”. I tell the doctors it is because Hashem Himself is holding Shmuli’s hand.
I feel an odd sense of calm. I’ve spoken to Hashem and I know He is listening. I don’t know how this will all end, but I believe with all my being that however it does, it will be as Hashem sees best. In His embrace my family and I will find strength.
MAY 4, 2020
Shmuli has had a few good days scattered between the mostly not-so-good days. Baby steps. The mantra has become one step forward…two steps back. But we keep on going. Shmuli’s scheduled to be trached tomorrow morning. We have been able to successfully eliminate one of the life support machines and lower the settings of the others in preparation of tomorrow’s procedure. But today’s attempt to lower some of his sedation has left Shmuli very agitated. He’s fighting the breathing tube that is down his airway. The doctors are all in the room trying to stabilize him.
It’s been two hours since this evening’s crisis ended. Something is not right. Shmuli’s oxygen levels are dropping. The vent settings are raised. No improvement. After an hour, a chest x-ray confirms the endotracheal tube has been pushed down too deep into his lungs. The doctors explain that this is a “mechanical issue”, occurring inadvertently when the doctors were trying to address his agitation. They’ve repositioned it. “Don’t worry” they tell me. But I do.
MAY 5, 2020
8:00 AM
Shmuli’s had a rough night. Oxygen levels and vital signs are erratic. He is not responding to any of the treatments tried. He’s been taken off today’s surgical schedule for the tracheotomy. I call my family and let them know that the trach won’t be happening today, again. I tell them not to be despondent. This “mechanical issue” that occurred is so incredibly not הטבה כדרך that we have to believe that it was just not meant to happen today. I believe this with all my heart. We just have to continue storming the gates.
2:30 PM
I’m in the hallway talking to one of the doctors. Shmuli’s nurse is in his room Suddenly she is at the doorway screaming. “Call a code!!” We all go running. Shmuli is in respiratory arrest and his heart rate is dropping rapidly. The medical team begins attempts to resuscitate. A slew of specialists converge on the room. Cardiologists. Pulmonologists. The ICU staff. They don’t let me in the room. I’m in the hallway saying Tehillim. I send a mass text to everyone that now more than ever we need to plead to the One above.
…דמעותינו הכניסו דמעה מכניסי
10:00 PM
B”H the interventions work. His heart rate and blood pressure stabilize for now. This episode however has left him with a collapsed lung. His oxygen levels are dangerously low. The ventilator settings need to be put all the way back up to where they were when we first were admitted a month ago. He is back on all the life supports. Like the game of Chutes and Ladders, we thought we were so close to a win…only to slide back all the way down.
I beg Hashem to carry me now more than ever. I don’t know if I have the strength to repeat the ups and downs of the last month. I cannot even look at the numbers on the machines. We are back to square one. I see the look on the doctors’ faces. They are trying to be kind and hopeful, but they too have no words.
MAY 9, 2020
Motzei Shabbos. It’s been four days and no significant improvement. Shmuli’s numbers are not good. He’s not responding to any of the treatments. I’m starting to feel like we will never get out of this place. I beg Hashem to have mercy on Shmuli and his holy soul.
MAY 11, 2020
As unexpectedly as Shmuli’s condition deteriorated, so it seems is the climb back up. Yesterday afternoon, his oxygen levels suddenly began to improve. To everyone’s surprise, the numbers hold. He is still on multiple life supports, but this is the first bit of good news we’ve had in a while.
Thinking out loud, I casually comment to Dr. Daube, the doctor in charge of the unit this week, that it’s a shame we can’t maximize this little window of opportunity and get Shmuli trached while he’s on this upswing. It’s been over 5 weeks since he’s been admitted and remains on heavy sedatives and paralyzing drugs. I worry how his muscle tone will recoup enough for him to ever breathe on his own. To my surprise, the doctor agrees. He tells me he is going to reach out to the surgeons and aggressively pursue getting him on the OR schedule. I’m skeptical. Shmuli is so far away from the criteria previously set by the surgeons for safely doing the procedure. In fact, he doesn’t meet a single one.
MAY 12, 2020
9:15 AM
Dr. Daube bolts into the room. He excitedly tells me the surgeon has agreed to perform the tracheotomy at 11 this morning. I’m in shock. It makes no sense. Even Dr. Daube admits he is surprised how little convincing the surgeon needed. I say a quiet tefilla and decide not to tell anyone until the surgeons are actually in the room. Part of me can’t bear another disappointment. The other part of me wants to selfishly savor the wonder of this נס.
10:45 AM
The surgeons enter the room to do the procedure at the bedside. I’m escorted to the family room to wait. I call my family and share the good news. We all daven that the procedure goes well. Twenty minutes later, I’m back in the room and Shmuli is recovering. The procedure was uneventful. ה׳ חסדי.
MAY 15, 2020
Since being trached, the sedation is being decreased slowly. I’m at Shmuli’s bedside “talking” to him and it seems as if he’s mouthed the word “water”. I am certain that I am imagining this. I ask the nurse to come over. She asks him if he is thirsty. Though extremely lethargic, he nods his head yes! Then he lifts his hand a bit and signs for “drink”. He hasn’t used sign language since he was three years old!!!! He’s just responded to a question appropriately!!! Is he back??? He is back!!! We are beyond ecstatic. All staff comes rushing in to watch as he sucks on a moistened swab. One of the doctors asks if he likes the water and he groggily gives his distinctive thumbs up! לה׳ הודו!!!!!
LEIL שבועות
It’s hard to believe we are in the hospital for yet another Chag. It’s been a little over two weeks since Shmuli’s been trached. He is slowly being weaned off of the ventilator, one hour at a time, though he still needs high levels of supplemental oxygen. He’s been treated, successfully B”H, for yet another septic infection and a variety of other complications. A dear friend sends over Yom Tov meals. She is the administrator at Yeshiva Bonim Lamokom, but she has turned into the truest of friends. She doesn’t skip a detail in ensuring that I have a semblance of החג שמחת, from the menu to the variety of festive place settings. Thank you, Tali!
JUNE 8, 2020
The doctors begin dischargeplanning discussions. Shmuli is on a trach collar by day and still needs ventilator support at night. Due to few rehab facility options in this Covid era, we plan to take him home, with nursing care and therapies at home.
JUNE 17, 2020
82 days after getting sick… 76 days after a confirmed positive Covid-19 test… 74 days after being admitted… 73 days after being ventilated… 36 days after being trached….We are finally going home!
הזה לזמן וקיימנו שהחינו ברוך.
EPILOGUE
The weeks following discharge are some of our hardest. Shmuli is completely dependent for all aspects of his care. He cannot roll over in bed on his own. He cannot stand or walk independently. It takes four people to transfer him from the bed to the wheelchair. He has a stage 4 pressure ulcer. He is still ventilator dependent and needs high levels of oxygen when off the vent. He is still addicted to the narcotics he received in the hospital and is experiencing PTSD (post-traumatic stress disorder) which affects his mood, behavior and sleep pattern. He needs to relearn all self care and ADL skills. Shmuli is working harder now in therapy than ever before.
Through the continuous grace and חסד of the Ribbono Shel Olam, we were זוכה to see nissim every single day. On July 7th he took his first independent steps. On July 15th he climbed the stairs to his bedroom for the first time since March 31st. He spent all summer (re)learning how to breathe independently, then how to breathe and talk at the same time. On August 17th, two months after discharge, the trach was B”H removed.
On September 8th, ה׳ בחסדי, Shmuli joined the rest of his class on the first day of school.
I would like to openly thank הוא ברוך הקדוש for granting us the privilege of witnessing His
גלוים נסים every single day. I would like to thank my family, especially my children, whose strength and support sustained me through this difficult time. I would be remiss if I didn’t take this opportunity to thank everyone who was a part of our story. Thank you to my son’s PCPs at Boro Park Pediatrics, who advocated for him and supported me every step of the way. Thank you to Dr. Joshua Kerstein, who volunteered his expertise and liaised between the Pediatric ICU and Adult medicine team. Thank you to my extended family at Shmuli’s yeshiva, Bonim Lamokom, under the leadership of Rabbi Zev Horowitz, who buoyed us in every way imaginable…every single day. You were our lifeline. Thank you to my friends and neighbors who took care of the needs of my family at home. Finally, thank you to everyone who davened and took on kabalos on behalf of Shmuli’s recovery. You are living proof that the power of tefillah is all-encompassing and has the force to move mountains.
I ask everyone reading this to please continue your tefillos and kabalos in the z’chus for a refuah shelaima to all the cholim of Klal Yisroel and אבא אברהם בן לייב ארי׳ יהודה נשמת לעלוי, a yeshiva friend of Shmuli’s who unfortunately did not survive his grueling bout with COVID.
Thank you, Hashem.