Warning: Picture and Word Heavy Post
I wanted to remember every single detail and took as many pictures as I could because I really was afraid we would not be returning to a normal life with Lucy after this- a sobering thought, but very real.
As I’ve shared before, things have been a little rocky here this year. I won’t recount the lessons we’ve learned so far, and I will not list the numerous challenges. What I will restate is that my anxiety and subsequent OCD have been slowly ramping up this year (again, I know. Lather. Rinse. Repeat.) Each challenge accentuates the areas in my life where I need to increase my faith...where I need God to help me increase my faith.
As a parent of 8 young children with no local familial support, this pandemic and quarantine have been especially isolating. This time has been an excellent reminder that I have zero control and that God cares for and provides for each and every need of our family. But even as I watched our family float along this spring, I could feel my heart and soul and mind failing. This is not because God isn’t present in my life. This is my own struggle, as God walks beside me and, most often, carries me. As I felt myself slipping, I clung to Him even harder. One morning before our family rosary, Esther showed me that she had found one of my old novena books to St. Anne. She held it up for me to see. A serene picture on the front, with gold embossments. St. Anne, GRACEFULLY and CONFIDENTLY, teaching Mary as a young child.
“I WANT THAT!”
I said it aloud.
Esther, surprised at my outburst, started to quizzically hand me the book.
“No,” I said. “I want what Saint Anne has. I need her faith! I need faith and trust in my motherhood! Let’s add on this novena to the end of our daily rosary! Everyone can pick their own intention. I will ask God for the gift of faith and confidence in my parenthood. This is going to be amazing!”
Pause.
Breathe.
As I read this back to myself, I remember someone cautioning me as a teen that God doesn’t always answer our prayers the way that we anticipate. “Be careful what you pray for!”
Yeah yeah yeah.
Ok.
Whatever.
I prayed for faith anyway. I think I believed that God would probably just “Pentecost Sunday” that gift right down on my Stay-At-Home-Mom head. I had hoped.
This was not the case.
When I began the novena, Lucy had been fighting off "some bug". When the children get sick, my anxiety ramps up to psychopathic levels. This time was no different. I was on edge and jittery. I needed faith. I needed help in my motherhood. I needed confidence. I watched her slowly get sicker, every day. Our doctor’s office had been closed since the beginning of March. He was taking televisits, but I knew someone had to lay eyes on my baby. Her fever had been raging around 103 for days. Tylenol and Motrin weren’t bringing it down. I peeked in her ears, and they were definitely pink, but not the worst infection I’d seen. Something bigger was wrong, but I couldn’t figure it out. Then, one night, she slept for 8 hours straight. This alarmed me. (I know I know. Babies should be able to sleep through the night at Lulu’s age. She doesn’t. We nurse. We bond. She snuggles. She’s awake every 2-3 hours still.) Anyyyyyywayyyyyyy, I called the doc and he prescribed Amoxicillin for a suspected ear infection. She started the course of antibiotics...and never improved. I called the on-call doctors every single day. No improvement and she was acting tired now. Three days into the dose, Lucy developed a rash. A strange rash, just above her diaper line and around the back of her neck. It looked an awful lot like heat rash, just angrier. My stomach was rolling and my brain was going 100 mph. I knew something bigger was going on that I just couldn’t see. By Friday night, June 5th, she was lethargic and couldn’t sit up straight. The rash has morphed quickly into an itchy disaster all over her poor little body. Bulls-eyes. That’s what they looked like. I fought the urge to Google, as the search engine is my undoing during panic attacks. Matt was holding her at dinner time, and I noticed her feet turning blue.
Enough was enough.
We hadn’t left the house since March. Lucy had only been in the car twice since our accident. I grabbed her brand new car seat from Mike and Amanda and started buckling it into Matt’s car. I was going to drive her to emergency at Port Huron, the hospital in which she was born. Matt kindly offered to drive us so I could sit in the back with Lucy. Sarah and Joseph were up to watching the littles at home. I told them that Matt would be back as soon as humanly possible.
The ride was awful. Lucy slept the entire time, another reminder of how sick she really was. Lucy hates the car. Screams anytime we even go sit in it. We arrived in Port Huron and the parking lot was eerily empty. Yes, a reminder that COVID-19 had terrified everyone to the point of avoiding the hospital, encouraged the hospitals to put visitor restrictions in place, and limit the number of people coming and going. I donned my mask and practically ran into the emergency room with Lucy. I told Matt, over my shoulder that I would text him updates but that he needed to go home to be with Sarah. He refused and said he’d wait in the parking lot. I think he expected that they would send us home. I knew they couldn’t. The emergency waiting room was a ghost town. The receptionist had Lucy’s info in the computer from birth and I didn’t have to fill out any paperwork since our insurance hadn’t changed. They took her vitals, and as I watched her oxygen saturation drop to 85%, I texted Matt and told him to GO HOME- I knew we’d be staying.
They brought us right back to a room and started talking about admitting Lucy. They hadn’t seen a rash like this before and it looked, strangely enough, like Kawasaki related to Covid. They swabbed Lucy for the flu, for COVID, and took a urine sample. Her fever kept rising and now she was so lethargic that she didn’t even fight the nurses as they poked and prodded.
I was TERRIFIED. Simply the worst thing I’d ever been through.
Ha! I keep saying that. I need to stop saying that. Every time I say that, something worse actually ends up happening.
Lucy was able to choke down a small cup of Motrin before falling asleep again, and her fever responded by dropping to 101. Her oxygen levels were hovering around 91-95%. She was fighting something hard, I just didn’t know what. The doctors listened to me tell Lucy’s story and suspected an amoxicillin reaction, although that didn’t explain the concurrent fever. As we waited on the urine culture and nasal swabs, they took an X-ray of her chest, which turned out completely normal. After the nurse practitioner did a thorough exam, the lab results started coming back. She did still have a double ear infection and her urine culture was positive. They decided for the supposed allergic reaction, they would give her IV Decadron. It worked so quickly, I could hardly believe my eyes. Her spots started lightening and then fading completely. She started looking pale, her fever broke and she started having cold sweats. Her oxygen level still wouldn’t rise and I was having to hold a nasal cannula, inserted in a cup, up to her face.
Around 1am, Lucy's fever returned and her oxygen just wouldn't stabilize. The results for the COVID swab hadn't returned, but the docs didn't feel comfortable keeping our babe at Port Huron. They were losing her veins and couldn't get the blood draws done. They even tried doing a scalp access, to no avail. They had called Children's Hospital in Detroit and were planning our transfer by ambulance as soon as possible. Lucy wasn't getting better.
We still didn't know what was going on.
We needed more specialized care.
The ambulance came to pick us up around 1:30a. Watching Lucy's limp body get strapped to the stretcher and pushed down the hall was extremely challenging. I had trouble keeping my emotions under control. I hadn't slept and my constant panic was wearing me down. I am ABSOLUTELY CERTAIN that it was the grace from the intercession of our prayer warriors that kept me standing and breathing.
Absolutely certain.
The ambulance ride was horribly fast and bumpy. I could tell that the paramedics were uncomfortable with Lucy's state. Also, since everyone at this time was wearing masks, it was extremely difficult to read the health care worker's faces.
We arrived at Children's Hospital. I was discombobulated and disoriented. The nurse Justin said, "Welcome to the heart of Detroit!" His eyes were smiling.
I felt a wave of calm.
Grace upon Grace upon Grace.
Someone was praying at that exact moment because Justin's very next words were, "You are in the right place. You did a good job." God knew I needed those words.
The Holy Spirit is clutch, you guys.
They whisked Lucy into her new room and quickly set up telemetry, pulse oximetry, IV fluids and tried to get bloodwork. She was swelling pretty badly and they were having trouble accessing her veins. They took another urine sample and set us in a room with respiratory precautions. Her COVID swab still hadn't come back, so we were being treated as though we were positive. I wasn't allowed to leave the room for anything- not that I would have. No one was allowed to visit. One parent was allowed at a time in the hospital. I ached for Matt. I knew he would have been strong. I knew he was in the right place at home, bringing strength to the other seven babes. I knew my job was to be strong where I was, too.
Because we were on an infectious disease floor, and because Lucy was being ruled out for COVID, all health care workers entering our room looked like Storm Troopers. Gowns, masks, eye shields, gloves- it got overwhelming really quickly.
Saturday morning began with the IV team coming in and checking out Lucy’s veins. Neither one of them felt comfortable or confident enough to stick her, so they left without the badly needed lab draws. They said they’d be paging anesthesiology next.
So, the scoop was that Lulu was in the hospital and no one knew if she was having a reaction to the Amoxicillin, if this was a reaction to a UTI that she’d had for an uncertain amount of time, if it was a reaction to the double ear infection, if it was COVID-19, or Kawasaki.
This is where things become a blur. In order to write this, I needed to go back over my texts messages to my mother during that weekend:
“Saturday Morning: I love you too. Thank you for all the prayers. The grace from the prayers is palpable and I know that is the only reason we made it safely through the night. We are at Children's hospital in Detroit now. They moved us here around 2a by ambulance from Port Huron. She is on fluids and being monitored very closely. They've taken all sorts of swabs, including flu, COVID and a nasal swab to culture. She has infections in both ears and very large tonsils (that would account for the trouble swallowing and all that snoring!). She's nursing but not eating much. She is very swollen and itchy and uncomfortable this afternoon. Because they tested for COVID, we are in an isolation room. They will be coming in soon to do an ultrasound of the heart. Because she's so swollen, they haven't been able to draw her blood here. The IV team will be here in a minute to help out. Please keep praying. Pray that God gives me the strength I need to be alert and calm. Pray that God gives Lucy the grace to accept help...instead of trying to kick all the doctors in the face.
By Saturday evening, we were stuck in a holding pattern. Without being able to access Lucy's veins, we wouldn't have the answers we needed. The anesthesiologists said they needed to bring her to the operating room, put her under, and do some probing for her veins under ultrasound. She was extremely uncooperative and they had no other way to get her blood. They told me that while she was under, they would also be performing her cardiac ultrasound. This was, by far, the most terrifying part of the hospital stay. They allowed me to be in the operating room as she went to sleep, but I had to leave before they started poking.
As I sat outside the operating room, at the empty triage desk, staring at all the empty rooms and listening to Lucy's steady heartbeat in the background on the monitor, I panicked. True Panic. I had never felt so alone in my life. So fearful. So empty.
They were able to get the blood they needed for her testing and also inserted two IV lines. The cardiac ultrasound was completed and I was able to hold Lucy as she woke back up. It was not a pretty process, as she was gasping for air and VERY ANGRY.
I felt relief when we got back to the room, knowing that we would finally have some information and make some type of progress. I asked the doctors, who were checking in about every 30-60 minutes, to give me some hope. They responded by saying that she needed more than they could give her on that floor. She needed Intensive Care.
The hospital staff took such good care of us. Since Matt couldn't visit or bring me food or clothes, they searched the other floors and found me several outfits and brought me food from the kitchen. Lucy was on a soft diet, but wasn't taking anything by mouth, so I was able to eat her oatmeal and yogurt for each meal during her stay. The nurses helped by charting in her room so I could go to another room to pump and wash up. They worked hard to make sure I was able to physically function and care for Lucy.
My texts to my mom:
Sunday Morning: "She’s getting worse. They are moving her to ICU in the morning. Her bicarbonate levels came back really low (dehydration) so her fluids are third spacing...making her swell. She has a positive Urinary tract infection. They just started IV Meropenem, an antibiotic that isn’t in the same family as amoxicillin. Her symptoms are all masking other symptoms and making diagnosis difficult. As the labs come in, they are able to rule more out. Her cardiac echo came back completely normal, with no swelling of the coronary arteries, which was a major concern. She has a fever that comes and goes and won’t take anything by mouth. They just gave her rectal Tylenol for pain/fever. She just beat up the poor ultrasound tech who came to get pictures of her kidneys and tummy ( 💪) so she’s showing her fighting spirit. She’s earned herself quite the label on the floor as everyone can identify her screaming and punching. The ICU docs think that no matter what the diagnosis ends up being (Kawasaki, PIMS r/t COVID, serum sickness from the amoxicillin, plus the uti, teething and dehydration) that she can be treated and helped better by having more focused attention. I’ll keep you updated as things progress this morning.
I told her we haven’t left our house since March and COVID was not even a possibility, but she said she just saw a two month old that hadn’t been anywhere either just test positive. The parents suspected something came in on groceries."
Sunday afternoon: COVID NEGATIVE. Off isolation. Starting steroids now for her serum sickness! Antibiotics for her UTI.
Monday: Hi momma. I love you too. We are doing ok this morning. Lucy started peeing last night and I don't think I've ever felt so relieved to be changing a wet diaper. The doctor said that they all agree they've never seen such an extreme case of serum sickness, one of her official diagnoses. Lucy is restless and irritable. She is afraid of all the masks and face shields. Since she was COVID negative, the staff no longer look like storm troopers when they come in. But, the general precautions here still make communication with a 13 month old a little tricky. She started blistering last night on the tightest parts of her skin, so we are watching her swelling with eagle eyes. She screamed for a good chunk of the night, but calmed down after some rectal Tylenol and was able to sleep for a couple hours...while I held her. The doctors and nurses are all assuring me that they can help with the symptoms (her itchiness and pain) but they cannot shorten the life of the sickness: It has to run its course. They said she should be turning the corner within the next 24 hours, so I am holding tight to Our Lord and begging Him to continue carrying me through. The grace in this hospital room is overwhelming. I am surrounded and uplifted... I KNOW it is the whole communion of saints that is praying for my baby right now. Every single person who has prayed for our Lucy. Every kind thought. Every offering. I know God is answering the prayers of every single person who is begging at the Throne for my family. I can feel the fear gripping at my stomach, but then waves of peace wash over me and I breathe again. It feels like an unseen battle is being fought. Does that make any sense? I keep thinking back to the conversation we had last week and to the beginning of my novena to St. Anne. I told the Lord I would carry this cross if He would give me the strength and grace to do it, because He and I BOTH know I had nothing left after Danny's poison ivy/dermatitis/ball bearing swallowing😳/Lucy's initial illness. He is so faithful. He is so good. Happy birthday to my Matt. I wish we were all together again.”
THIS WAS THE MOMENT I KNEW SHE HAD TURNED THE CORNER.
She could only sit up for a couple minutes at a time, but she smiled. And played. And read a book.
Miracle of miracles: Lucy was discharged on Matt’s birthday evening. Still sick with her official diagnosis of Serum Sickness, but the doctors had zero desire to keep her there when they’ve found that children recover better at home...and they didn’t want Lucy to pick anything else up in the hospital. They warned me that it would be 6-8 weeks before she was back to normal. Serum sickness, regardless of the cause, takes a LONG time to leave the system. She would have arthritis-like pain, swelling, hives and just be lethargic and cranky for a while.
They were right.
