An update about Lincoln after COVID-19
Lincoln is Home!
After a week in the hospital and a little over a week at home with oxygen, Lincoln has recovered from COVID-19 and has weaned completely off of oxygen.
Lincoln was admitted to the hospital on March 30, 2020, after a week of mild cold symptoms and 3 days of high fever with respiratory distress. On April 1, 2020, we learned he had tested positive for COVID-19. While he was in the hospital, I wrote about his hospital stay with COVID. He was hospitalized for a week, required a significant amount of support, and was discharged home with oxygen. I wanted to come back and give everyone an update about Lincoln; to write a little bit about what it was like coming home, give you an idea of how long it took Lincoln to recover and comment about how I have been processing through his illness and hospital stay.
The First Weeks at Home
There is nothing like the feeling of being at your own house, and I was elated when we got the ok to take Lincoln home on oxygen. Lincoln and I left the hospital with a portable tank of oxygen to get us home, and the remainder of his oxygen supplies were delivered to the house that evening without any issue. We were given a combination of small and medium-sized portable oxygen tanks and an oxygen compressor to use at home. Turns out, 4-year olds can tell the difference between oxygen from a tank and oxygen from a compressor. We had a few battles the first week about having to wear the oxygen all the time, and he would complain “It isn’t fresh” or “I don’t like this freshness”. I even went so far as to test out the oxygen from the different sources myself — indeed, they do smell a little different. Overall, he was a really good sport and once the oxygen was on for about 3 minutes, he didn’t notice the smell anymore.
He required the oxygen at home, 1/4L to 1/2L, for an entire week after coming home. After a week at home, I slowly started to trial him for little bits of time off of his oxygen. I took him off his oxygen for 2 hours at first, then 4 hours the next day. We continued to slowly increase the amount of time he was off of oxygen until he was able to come off completely. Twelve days after coming home, he was able to come off his oxygen at all times!
The first couple of days home, he really just rested in his room watching Octonauts. The girls would say hello to him from the door. We were giving “virtual hugs” to each other from across the room. I did not have him strictly isolated, because he is 4-years old. We had him stay in his room for the first several days at home and then practiced strict handwashing and limited contact for the next week. We really had to encourage eating and drinking the first few days at home to keep him hydrated. It was clear that although he was feeling better, he wasn’t back to his normal self yet. But every day he got a little stronger, ate more, played more, smiled more, and laughed more. By the time we had been home for a week, he was riding his scooter across the back deck with his oxygen in tow!
Five days after Lincoln came home from the hospital, my husband came down with a fever. He had fever, chills, cough, and a severe headache. We never had him tested, but we know he contracted COVID-19 from Lincoln. He was isolated to our bedroom until he was symptom-free. He has since completely recovered and is feeling well. Neither of the girls became sick, and neither did I.
It has now been five weeks since Lincoln first got sick, four weeks from when he developed the high fever and twenty-five days since he was admitted to the hospital. Life is beginning to get back to normal for us. My husband is back to working from home, we are doing zoom meetings with the kids’ teachers for school and trying to get outside in our yard on sunny days. I will get tested next week before returning to work in the NICU to ensure I am indeed negative. We have amazing friends and community from our neighborhood and school that have brought us food and Easter baskets and dinner every night to make it possible for us to not leave the house at all.
We have left the house twice. The first time was when Lincoln and I went to his follow-up appointment with the pediatrician to start weaning his oxygen. And the second was yesterday - the kids and I loaded into the car, turned on the radio, and drove through the car wash. We needed a safe, isolated outing - and the car wash was a hit with all three kids.
I have spent the last several weeks helping Lincoln recover, helping my husband while he was sick, and reassuring Lincoln and my girls that they are safe and everyone is getting better. Much to my surprise, during this time, Lincoln’s story has been shared around the internet. A lot. I originally wrote the post and shared his story as a way to encourage people to stay home. It is hard to be confined in the house with little kids, trying to “homeschool” and work from home, being on top of each other 24/7 for weeks on end. I wanted to show people why they were staying home, what they were trying to protect themselves from. I am grateful that I have had a chance to share our message: that it is important to follow social distancing, that kids can get sick, that kids most often recover, and that living in the moment is healthier than pre-emptively living through the trauma that may never occur.
But through this process of Lincoln’s hospital stay and sharing our story, I believe I gained so much more than I shared.
I have a new-found love/hate relationship with social media. Sharing personal stories and accounts of events allows people to connect in ways that are otherwise impossible. We gain first-hand knowledge of what is happening around us. The videos of Lincoln were taken by me for my husband while Lincoln was in the hospital. He was home with the girls, and I wanted him to know what was going on with Lincoln. Later, I shared them on the Mighty Littles blog to help people see what COVID looked like in my child. Social media allows information to travel to places and people who otherwise would be separated. Separated by distance, location, social status, or personal beliefs. I love the fact that personal stories can bring people together. But I found the mom-shaming and denial of fact to be disappointing and hurtful. Despite the negative and hurtful comments that came from sharing our story, I would do it again as a way to educate people.
While I was at the hospital, I was in survival mode. I focused on what was happening right in front of me. I didn’t allow myself to go back in time and berate myself on what I might have done differently. I know that we did what we were supposed to do. I also wouldn’t let myself think about what was coming over the next few hours or days. The thoughts were there - they would come flooding into my brain during quiet moments in the hospital - “What if Lincoln gets worse?” “What if he needs to go on a ventilator?” “What if my girls get this?” “What if my husband gets sick or needs to be hospitalized?” Every time the thoughts came, I just turned my attention back to what was happening right in front of me. This is the advice that I give moms in the NICU all the time. Only live through the bad days once, not pre-emptively living through the bad moments that may never arrive. And it was following this advice that helped me through Lincoln’s hospitalization.
It is only possible to process what happened with Lincoln and COVID-19 now that we are home and I know how our story ends. We are all healthy, recovered, secure. I imagine I will go back to this many times over, wondering what we might have done differently, reliving those really scary 48hrs in the middle of his stay when it felt like we were turning support up every minute and getting nowhere. I am grateful that we had a positive outcome, and I am sure I will still be processing for weeks and months to come.
I have never been so happy to have all of my family in the same place, and able to hug and snuggle again. I will never take for granted the comfort that comes from my family during times of stress. It was incredibly difficult to be separated. A hug from my husband, the knowledge that he is my safe spot, the daily smiles, and hugs from my children that bring me joy on a daily basis. These are the things that fill my heart with joy and bring me genuine happiness.
Having fun all together in the back yard!