30 years ago, my tiny Becca was in heart failure, no immune system and living in our home Pediatric Intensive Care unit with her 16 hour a day nursing. She had fought and survived despite her being ruled out for a heart transplant and due to her immune disfunction and high white blood counts (we now know that it was JMML a cancer sometimes seen in those with complex Noonan Syndrome).
Any HOPE for her survival was if they could fix her severe pulmonary stenosis and ASD, but with her severely thickened heart muscle, she may not survive the surgery.
She was scheduled for surgery and the day before her brother Ian broke out with chicken pox. Calling the nursing agency and hospital and soon everyone was busy trying to figure out what to do. Becca was at home at pediatric intensive care level of care. The fact her siblings all but Kristy, had not had chicken pox had kept Becca away from seeing her siblings for her entire hospitalization but for one short gowned, masked up visit in a conference room carefully arranged by the hospital staff. They planned this visit, not expecting tiny Becca to survive. They had a sister and they needed to at least meet her once.
Now the dreaded pox had intervened again. Becca's heart was critical and a delay would worsen the already precarious trajectory she was on. The Red Cross had been called to get her "immunities" to the chicken pox. Checking in with the experts on her immunology team, recommended seeing as Chicken pox is highly contagious rash illness that is transmitted from person to person by direct contact or by airborne spread from respiratory secretions or aerosolized fluid from skin lesions. The kids would have to be removed from the house. Ian has chicken pox, according to the experts, we cannot avoid spreading it in the house. 65-85% of household contacts will become infected. The incubation period is 10 to 21 days. And the kids could be infectious 1 to 2 days before they have any sign of a rash.
Learning that infants, and immunocompromised persons are at higher risk of complications which we knew Becca already had, she was in heart failure and medically fragile, she was at risk of secondary bacterial infections (which she already battled with several rounds of systemic staph and bacterial infections), dehydrations, pneumonia, encephalitis and all which may result in death which she was already on the edge of. The decision was made to move our kids out of the house (all but Kristy) as she had already had chicken pox. Packing the kids, moving them into my Mom's house and then bleaching our entire house and opening all the windows in March in Minnesota. We began our quarantine of Becca.
Thank God for Becca's 16 hour a day nursing care. I juggled home and the sick house at my mothers. I couldn't just drop off my 3, 5, 7, and 9 year olds without helping. Mom was already babysitting my 1 year old niece in their two bedroom townhome. I would leave the nurse with Becca and run down to Mom and help out getting home before shift change at 3. Shedding my clothing in the garage, then to the shower and afterwards scrubbing and disinfecting the only bathroom in the house. Nothing I wore could come into the house. Lessons I learned would give me a crash course in infectious disease control and how to keep Becca safe and get her to surgery. Every 21 days another child would break out in the dreaded pox and of course no two at a time to get this over with. My niece would get them with Marissa. A toddler and my 5 year old would get a very itchy feverish case. My siblings would come home from college and walk into a pandemic. They both would get the pox and have to delay their returns to the college dorms.
The kids were still at Mom's. Every 21 days like clockwork someone else broke out. I had to keep those who were in the middle or end of the chickenpox epidemic in continued isolation. Slowly one by one they could come home but 7 days after the last pox was crusted over. And with Becca's fragility we just kept them at Mom's until Becca's surgery. My laundry had to be taken to the laundry as it couldn't be done in my laundry room where the furnace could take it airborne to her nursery. I was still stripping and scrubbing the bathroom some days twice a day as I had to head to Mom's twice a day to help with morning routine, come home for shift change, feed the kids at home and then down to Mom's to help with dinner or saying goodnight to my children.
Becca's surgery would happen finally after 30 days at the end April of 1990. 10 months old, she would get a chance to live. Knowing the odds that she would not survive the surgery were high. She would spend 14 days in the Pediatric Intensive Care unit and the little known complication of chylothorax and her damaged lymphatics would make her critically ill again. Fevers, infection and more. But the Tiny Titan, fought on. Testing on her immune system showed now she was severely immune compromised. Virtually NO immunities. Infusions of IVIG hopefully would protect her from the normal viruses that circulate and a simple cold could be a death sentence for Becca.
Becca was barely home when the hospital would call to say Becca had been exposed to measles in the hospital and her IVIG was quickly started. I began the road of understanding what it meant to be a parent of a medically fragile immune compromised child and she had 5 siblings. Chicken pox quarantine, measles exposures. Flu Shots for everyone who would come into contact with Becca were mandatory.
We have to protect her or she will pay a huge price.
Becca's surgery would happen finally after 30 days at the end April of 1990. 10 months old, she would get a chance to live. Knowing the odds that she would not survive the surgery were high. She would spend 14 days in the Pediatric Intensive Care unit and the little known complication of chylothorax and her damaged lymphatics would make her critically ill again. Fevers, infection and more. But the Tiny Titan, fought on. Testing on her immune system showed now she was severely immune compromised. Virtually NO immunities. Infusions of IVIG hopefully would protect her from the normal viruses that circulate and a simple cold could be a death sentence for Becca.
Becca was barely home when the hospital would call to say Becca had been exposed to measles in the hospital and her IVIG was quickly started. I began the road of understanding what it meant to be a parent of a medically fragile immune compromised child and she had 5 siblings. Chicken pox quarantine, measles exposures. Flu Shots for everyone who would come into contact with Becca were mandatory.
We have to protect her or she will pay a huge price.
Becca is still medically complex. Living at nursing home level of care in the community under her long term care support waiver and medicaid care support. She is blessed to have her funding and the choice of where she lives. Just like when she was a baby a waiver brought our daughter home with care support after the fight of the trailblazer Katie Beckett. We went on to foster and adopted another medically fragile child and God found Becca a little brother who needed a family who could help him like we did Becca.
When I saw the leaked video from China, New Years weekend last year, I began to watch and prepare for the pandemic on the horizon. Stocking up knowing that we may need to hunker down. Becca had two surgeries, one in January and one on March 6. Normally, I do all our follow up care and medical visits in the spring, summer and fall, avoiding the hospitals in the winter. Clinics and hospitals are not a safe place for people who are at risk. With these surgeries, she was in protective isolation from the middle of flu season. Masks for her and for staff. Reminding staff to wash their hands before examining Becca. The return to get the stitches out of her new feeding tube would not be able to be taken out. As the hospital shut down for elective care. Out of the box medical care, Doctor Dad's nurse and the PA from Madison with Dad assisting they got her care done and documented her follow up. We were now home for the duration. But Dad worked in the hospital and made the hard decision to retire early or he couldn't come home for months or years.
We are at home, telemedicine has been a Godsend for people like Becca and her little brother who is also medically fragile. He like Becca only goes to school when everyone else is healthy. The note on our front door warning people that "Medically fragile children live here" Do not enter if you have a cold, wash your hands, take off your shoes.
We are now home in "our bubble" of 4. Fortunately her brother and sister and their families were also in extreme bubbling for the summer and we had a chance to see them once or twice. Planning ahead for contact and keeping Becca safe. We are at home, the curbside pick-ups, the now society wide adaptations is making it easy for us to get what we need and stay safe. I just hope those do not go away as the pandemic wanes for those with disabilities who struggle to navigate the greater society.
The lessons of the years with Becca helped me be well informed in how to shield her and our family.
The COVID19 media and the concrete language of "Stay home, Stay safe." cause confusion for Becca and Mac. They are fully aware of the repercussions of getting sick. They lost their grandfather, they nearly lost their aunt, their 'favorite' protective brother was hit hard and blessed to survive. But the anxiety of going out is now our battle. Daily rides, visiting the horses at the stables, avoiding people at all costs, virtual rides at Disney and Universal Studios. Virtual school does not work for the visually impaired boy. Technology is our lifeline to the world and connections. Going for a ride will trigger Mac to have a tic outburst will follow. "F....... "Que-own-a-virus". You wreck everything. I want to see my friends again as we drive by the school. Driving by the movie theater, another outburst or sad tears, I want to have a Mackie's movie night with everyone again. Driving by Culvers, a longing "I want to eat out again." "I want to go look at the toys at Target again." "The Que-own-a-virus needs to become extinct like the dinosaurs!" and Mac wants to invent a laser to "zap that pesky virus out of the atmosphere."
As the Covid 19 vaccine is coming out, Doc and I were able to get our first miracle vaccine as medical care providers for Becca and Mac. But that does not mean we can let down our guard. No one seems to know where Becca fits in the tiers of vaccine roll-outs? Then there is Mac. I read the other day a newspaper article where the same Nurse Practitioner was talking about there begin testing of the vaccine on children. It will take months and more time. Patience and shielding will continue.
I am hopeful that someday we can see our family, friends and others again. But as you get back to your lives of normalcy, Becca and Mac and others like them are still at home or vulnerable every day of their lives. If you are sick stay home, if you are out, do not sneeze on someone. The Coronavirus has taught us to have health awareness and I certainly hope the cart wipes, hand sanitizers and more do not disappear.
In the meantime Becca and Mac are sometimes patiently waiting for the Coronavirus to become extinct and we can safely open up again.
